tag:blogger.com,1999:blog-77289231368587994852024-03-06T19:33:30.385-08:00International Eating Disorder Action Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.comBlogger86125tag:blogger.com,1999:blog-7728923136858799485.post-85547093630394918052016-01-12T07:06:00.001-08:002016-01-12T11:07:34.437-08:00Eating Disorders: Yesterday's Theories are not Today's Knowledge<div class="MsoNormal">
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As a community devoted to advancing the cause of true and
current awareness surrounding eating disorders it is always frustrating to read
articles which perpetuate outdated myths and stereotypes. <o:p></o:p></div>
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There are those who think calling out such pieces is unfair
and that due to the lack of 100% consensus in the field on certain points,
considerable latitude should be given, especially pieces related to
environmental influence.<span style="mso-spacerun: yes;"> </span>Others wonder
why make a big deal out of it—if you don’t like it, move along. <o:p></o:p></div>
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The administrative team of IEDAction believes that
perpetuating societal misunderstanding of eating disorders as having to do with
choice or vanity or being caused by family dysfunction is a damaging practice
with far-reaching implications. <o:p></o:p></div>
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Research shows that people—and politicians and governmental
research funding decision makers <i style="mso-bidi-font-style: normal;">are</i>
people—are more likely to support spending money spent on disorders they don’t
perceive as being caused by modifiable environmental factors. Don’t want lung
cancer? Don’t smoke. Don’t want your kids to have an eating disorder? Don’t be
a dysfunctional family. Don’t expect taxpayers to save you from your own folly.
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IED performs a watchdog/rabble rouser function at times – alert
for opportunities to push back on careless or false “awareness” pieces.<span style="mso-spacerun: yes;"> </span>Today we read a piece we feel typifies the
casual approach to disseminating relevant and up-to-date information; reading
such a piece is doubly painful when it is posted on a site that generally
provides solid information. This post on the blog at Eating Disorder Hope
titled, “<a href="http://www.eatingdisorderhope.com/blog/family-dynamics-at-the-dinner-table">Family
Dynamics at the Dinner Tabl</a>e” is one such piece:<o:p></o:p></div>
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The qualifiers “may” and “some” do not excuse that this
piece is a rehash and mish-mash of outdated research findings and beliefs
lacking in citations and written by someone whose Internet footprint does not
show specialized training in eating disorders.<span style="mso-spacerun: yes;">
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The bottom line is current research, whose findings are
agreed upon by most top eating disorder clinical and advocacy groups, in the
Academy of Eating Disorders <a href="http://www.aedweb.org/index.php/10-news/171-9-truths-about-eating-disorders">9 Truths about Eating Disorders</a>, shows eating
disorders to be a complex interplay of genetics, biology
and environment. As the AED 9 Truths affirms, that there is an environmental
influence in no way means “families cause eating disorders.” We DO know that early intervention and prompt access to evidence-based treatment is the best hope for a fully, lifelong recovery from an eating disorder. <o:p></o:p></div>
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Are there families with the issues outlined in this post who
have kids with eating disorders? Without a doubt.<span style="mso-spacerun: yes;"> </span>Are there families with the issues outlined
in this post who have kids without eating disorders? Yes, and they are by far
the larger number. Might families who have been dealing with a sick child with inadequate knowledge and resources (more common than not) become dysfunctional? Assuredly so. To portray families of kids with eating disorders as
COMMONLY having these issues is a gross injustice to both those families and to
those who receive treatment delivered under such antiquated beliefs. <o:p></o:p></div>
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One of our own administrators, Julia Fuentes, who developed
her eating disorder after the negative energy balance that resulted from
chemotherapy for osteosarcoma and spent years suffering under treatment that
expected her to identify the “underlying cause” to her eating disorder says,
“The talk about attention seeking annoys me because I can promise that if
attention was all I wanted I could have found a thousand more productive ways
to get attention. It all comes down to neurobiology—that’s the missing piece.”<o:p></o:p></div>
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Celia Robicheau, the mother of a young daughter in recovery
with a master’s in counseling psychology and a certificate of advanced graduate
studied in mental health, summarizes the feelings of many: “I think family
dynamics may result in many “messy” interactions, but they don’t cause eating
disorders, bipolar or schizophrenia and when these type-of unscientific,
uneducated, ‘feelpinion’, myth-perpetuating articles are shared by reputable
sites, we are fighting an uphill battle against those who purport to help us. <o:p></o:p></div>
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We have expressed to Eating Disorder Hope in the past, and
want to reiterate that message, before posting a piece ask these questions:<o:p></o:p></div>
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1)<span style="text-indent: -24px;"><span style="font-family: 'Times New Roman'; font-size: 7pt; font-stretch: normal;"> </span></span><span style="text-indent: -24px;">Does recent research support this?</span></div>
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2) <span style="text-indent: -24px;">Does it reinforce outdated stereotypes and myths?</span></div>
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3) <span style="text-indent: -24px;">Does this help families and those affected?</span></div>
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4) Might this hurt those affected?</div>
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Our opinion is this piece fails all tests; we once again ask
Eating Disorder Hope to follow an editorial policy that doesn’t stand behind a
disclaimer, but one that makes EDH a valued partner in saving both the lives
and reducing the suffering of those affected by eating disorders.<o:p></o:p></div>
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Jennifer Denise Ouellettehttp://www.blogger.com/profile/07278301590843811018noreply@blogger.com16tag:blogger.com,1999:blog-7728923136858799485.post-76716661154894179752016-01-06T19:21:00.004-08:002016-01-10T18:45:41.341-08:00Press Release: #WeDoAct<div dir="ltr" id="docs-internal-guid-d140511d-2e8e-6c08-29f4-ced6e72c2eaa" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">PRESS RELEASE</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;"></span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">FOR IMMEDIATE RELEASE</span></div>
<div dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span></div>
<div dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 17.333333333333332px; font-style: italic; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">January 5, 2016 -</span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"> </span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">ANNUAL WORLD EATING DISORDERS ACTION DAY TO TAKE PLACE JUNE 2, 2016</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;"><br /></span></div>
<div dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span></div>
<div dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Members of the eating disorder community, including affected individuals and their families, professionals, researchers and policy makers, have united virtually to increase access to accurate information, eradicate myths and collectively advocate for resources and policy change. The first World Eating Disorders Action Day will take place on June 2, 2016 and generate information virtually around the globe.</span><a href="http://worldeatingdisorderday.instapage.com/" style="text-decoration: none;"><span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"> </span><span style="background-color: transparent; color: #1155cc; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline;">http://WorldEatingDisorderDay.instapage.com</span></a><span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">.</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"><br /></span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span></div>
<div dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span></div>
<div dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Eating disorders are serious, treatable illnesses that result from a complex interplay of genetics, biology and environment. Eating disorders affect up to 70 million people globally including people of all genders, ages, racial and ethnic identities, nationalities and documentation status, abilities, sizes, and socioeconomic backgrounds. Eating disorders have the highest mortality rate of any mental illness, yet many go untreated despite the fact that new research and methods are increasingly showing positive results for full recovery.</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span></div>
<div dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">On the heels of the release of the groundbreaking <a href="http://internationaleatingdisorderadvocacy.blogspot.com/search/label/9%20Truths">“Nine Truths About Eating Disorders” </a> a global grassroots effort for a World Eating Disorder Action Day was launched to draw attention to these devastating, yet treatable disorders.</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"><br /></span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">According to Amy Cunningham, co-founder of International Eating Disorder Action, “The first ever World Eating Disorder Action Day sends a powerful message to policy makers across the globe on the need for action, underscores the fact that eating disorders don’t discriminate and at the same time gives hope for successful intervention.”</span></div>
<div dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span></div>
<div dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Through virtual and country specific activism, World Eating Disorders Action Day will advance the understanding of eating disorders as treatable genetically-linked illnesses that affect a large cross-section of the world’s population, embraces diversity, and raises awareness amongst policy makers to allocate resources and establish coherent national systems. Furthermore, the Day offers new connections and global partnerships, grows the advocacy base and creates opportunities for additional actions for change at an international level.</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"><br /></span></div>
<div dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span></div>
<div dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">A Steering Committee comprising the </span><span style="background-color: #fefefe; color: #373e4c; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Academy for Eating Disorders, Author June Alexander, Beating Eating Disorders, BingeBehavior.com, Eating Disorders Parent Support, Elephant in the Room Foundation, Families Empowered and Supporting Treatment of Eating Disorders/F.E.A.S.T, International Eating Disorders Action, Nalgona Positivity Pride, National Association of Males with Eating Disorders, National Eating Disorders Association, Not All Black Girls Know How to Eat, ReGlamME and </span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Trans Folx Fighting Eating Disorders will provide guidance and represent communities across the globe. </span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Contact and to join:</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"><br /></span></div>
<div dir="ltr" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">
<a href="http://worldeatingdisorderday.instapage.com/" style="text-decoration: none;"><span style="background-color: transparent; color: #1155cc; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: underline; vertical-align: baseline;">http://WorldEatingDisorderDay.instapage.com</span></a></div>
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<span style="background-color: transparent; color: #00b0f0; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Facebook: </span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">WorldEatingDisorderDay</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Twitter: </span><span style="background-color: transparent; color: #00b0f0; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">WorldEDday </span><span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">and </span><span style="background-color: transparent; color: #00b0f0; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">#WeDoAct</span></div>
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<span style="background-color: transparent; color: black; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Email: </span><span style="background-color: transparent; color: #00b0f0; font-family: Arial; font-size: 16px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">WorldEatingDisorderDay@gmail.com</span></div>
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Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-38315936998795267332016-01-01T15:04:00.001-08:002016-01-01T15:05:46.412-08:00Announcement: World Eating Disorder Action Day #WeDoACT <br />
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World Eating Disorder
Action Day</div>
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#WeDoACT</div>
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Inaugural Event: June
2, 2016</div>
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The administrative team and many members of International
Eating Disorder Action are both relative newcomers to the field of eating
disorder advocacy and possessed of can-do spirit. When we realized there was no
globally recognized day for eating disorders, it felt like a project in need of
piloting. We also thought such a day could provide a space and venue to work
together on vital areas of need in the ED world for which there is universal
agreement—things like early detection and access to evidence-based care at
appropriate level-of-care hospitals and treatment centers paid for by insurers
and national health systems. There may be philosophical differences on some
things in the field and we do all want those affected to recover; that is never
in question.</div>
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The idea became a dialogue in November and the responses
were immediately positive with people, and organizations both large and small, embracing
a project having diversity and inclusion, both demographically and by
diagnosis, as a core principle. With that in mind a steering committee of
wildly talented activists from the wider eating disorder community was formed
and work is now beginning in earnest. </div>
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The day has a name, a date and a hashtag: World Eating Disorder
Action Day, June 2, 2016, and #WeDoAct. We are ready to pursue United Nations
recognition of a global day and we are building a social media campaign
infrastructure parallel with the steering committee meeting to set goals and
lay out a timeline. </div>
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This is an all-volunteer movement; we are pledged to a
transparent process and invite anyone interested to join in. The first year
will be a virtual coming together and it is the plan that next year there will
be regional, culturally and politically relevant actions where advocates come
together to dispel myths and stereotypes and share the message that eating
disorders need to be treated and funded as the deadly disorders they are –
especially when early detection and access to speedy and state-of-the-art
therapies unequivocally improve outcomes. </div>
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As with pediatric cancers, pediatric AIDS and autism, it is
the critical mass of all stakeholders joining together on common messages and
missions which has the power to make needed changes in the diagnosis and
treatment of eating disorders. Please join us in raising our voices. To stay
informed please watch this space.</div>
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<b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-9578205268763693242015-12-30T19:52:00.002-08:002015-12-30T19:52:50.447-08:00International Eating Disorders Action: 2015 Achievements<div dir="ltr" id="docs-internal-guid-5e137502-f626-62b2-09a1-39a5e49ba9d0" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: #441d61; font-family: 'Times New Roman'; font-size: 24px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">International Eating Disorders Action: 2015 Achievements</span></div>
<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">January 2015</span></div>
<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">IEDAction sent a <a href="http://internationaleatingdisorderadvocacy.blogspot.com/2014/12/letter-to-health-canada-on-advisory.html">letter</a> to the Canadian Government asking for clear action on developing a national strategy for eating disorders. The letter joined other advocacy efforts and helped elevate eating disorders at Ministerial level. </span></div>
</li>
</ul>
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<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Eating Disorder Hope (ED website): For some time, a group of advocates has been concerned about the content of the website Eating Disorder Hope (EDH). The site is designed to have an educational feel yet many articles were outdated and promoted the debunked psychosomatic family illness model (the eating disorder as an expression of family dysfunction). The situation was similar to the Something Fishy website in that a high SEO ranking means many people searching for information land on this page. Action: Members of IEDAction sought to begin a conversation with queries sent to the Contact Us information on the site and via blog and Facebook comments and tweets on pieces whose content we objected to. Our comments and missives were direct yet never abusive. With all reasonable attempts to open a productive dialogue stymied, one of our members filed a BBB complaint on the grounds the connections between the information and the advertising was not clear enough. Outcome: We are pleased to announce that a dialogue began on Twitter with IEDAction member E.C. and that we have seen a big shift in the postings on the site. Thank you to all who helped with comments and tweets. Access to the most up-to-date research, and information about the evidence-based treatments informed by that research, is of the highest priority and we are pleased that EDH has decided to show their commitment to the HOPE portion of their name by publishing content that supports this mission.</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">February 2015</span></div>
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<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">IEDAction partnered with National Initiative for Eating Disorders and F.E.A.S.T. during Eating Disorder Awareness Week #EDAW2015 February 1-7, 2015 in Canada and the USA National Eating Disorder Awareness week #NEDAW2015 February 22-28th. IEDAction and Eating Disorder Parent Support mobilized members to write and share their personal eating disorder experiences on NIED and IEDAction blogs and used social media to raise awareness, reaching millions on Twitter. </span></div>
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</ul>
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<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">IEDAction participated in the Sock-IT to ED campaign during Eating Disorder Awareness Week, showing support by sharing photos of socks and raising funds for eating disorder organizations. </span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">March 2015</span></div>
<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Facebook: FB status updates included a "feeling fat" option, which pictured a chubby cheeked emoji. Action: IEDAction members supported the Endangered Bodies group by signing their petition to ask Facebook to remove this status update option. Members also commented to and emailed Facebook regarding the inappropriateness of this option stating that fat is not a feeling. Outcome: Facebook changed the wording next to the emoji to "feeling stuffed" and commented that "feeling fat as a status updated could reinforce negative body image, particularly for people struggling with eating disorders." They also stated that they will continue to listen to feedback from users.</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">April 2015</span></div>
<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Rescue The Anorexia Girl(game app for Android): Smart Touch Media app development company had a game app called 'Rescue The Anorexia Girl' in which required players to throw pies at a underweight character so she did not die. The app was for sale at Amazon, Barnes and Nobel and other app retailers. Action: IEDAction members took to action on Twitter, email and Facebook to express concerns about the inappropriateness of the game. Outcome: Within 48 hours the app was removed from sales and Smart Touch Media responded to members with apologies and promises to look more closely at content in the future. The story was picked up by media outlets globally including: madamenoire.com, inquisitr.com, yahoo parenting, terrafemina.com, youbeauty.com, ibtimes.com, washingtontimes.com, indiagazette.com, hellogiggle.com, Nydailynews.com, closeronline.com, independent.co.uk, people.com, MSN.com, ABC television in Philadelphia, Elle.com, huffingtonpost.co.uk, Nigeriadailynews.com, examiner.com and The Sun Newspaper in the UK. Several IEDAction members were quoted and IEDAction was mentioned in several articles.</span></div>
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</ul>
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<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">PBS Health Link: A member of IEDAction was contacted by WMHT- PBS Television (which serves Eastern New York and Western New England) about a Health Link special they were producing on eating disorders. Due to the member's efforts IEDAction, FEAST, Dirty Laundry Project and Eating Disorder Parent Support were mentioned as resources on the program and are listed as resources on their website.</span></div>
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<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Members of International Eating Disorders Action travel from around the world to attend the Academy for Eating Disorders International Conference on Eating Disorders 2015 in Boston April 23-25th. </span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">May 2015</span></div>
<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Members of the IEDAction community reviewed available text on the Anna Westin Act proposed to be submitted to Congress in the United States and provided constructive feedback to the components of the bill. </span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">June 2015</span></div>
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<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Committee Appointment: IEDAction’s Amy Cunningham became a member of the Advisory Board for the Academy for Eating Disorders. Since her appointment she has engaged to help progress the field of eating disorders. </span></div>
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<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Nine Truths of Eating Disorders (collective action): IEDaction was invited by the Academy for Eating Disorders (AED) to help develop the “Nine Truths of Eating Disorders” as part of a group of leading eating disorder organizations. </span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-left: 36pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"><img height="209" src="https://lh3.googleusercontent.com/6uCuW5F4hrCzAf-D8ZxT3qZA7lQEBovp3Q_f2SiYvwN_mXq9R7GtFkha4WqFVowhhdvOi3OEbD9OnUuPxdoosmJFcT_I2DO5db-2PWmdANCyI5NFmMJA16hfXcvhOOZr6jUoGi0-TYyakxhl" style="-webkit-transform: rotate(0.00rad); border: none; transform: rotate(0.00rad);" width="452" /></span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">July 2015</span></div>
<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Committee Appointment: JD Ouellette became a member of the Patient Technical Advisory Committee on Behavioral Health for the Joint Commission. Since her appointment she has participated in meaningful discussions with the committee in hopes to change aspects of eating disorder care.</span></div>
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<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Cambria; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span><span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"> IEDAction members along with ASPIRE held a conference call with leadership of the Butterfly Foundation in Australia to discuss concerns about their “Don’t Dis My Appearance” campaign. A respectful conversation helped clarify concerns with commitment to have broader consultations in future campaign development.</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">August 2015</span></div>
<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">CEED Family Consultation Survey (opportunity for improved resources): IEDAction promoted the Victorian Center of Excellence in Eating Disorders survey by asking parents and caregivers to complete the surgery to help them develop an early intervention resource package. Many members from around the globe participated by voicing their ideas of what is needed in terms of early intervention based on their experiences. what worked and what did not in their pursuit of caring for a person with an eating disorder.</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">September 2015</span></div>
<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Cambria; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span><span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Suicide Prevention Week: The risk of dying from an eating disorder by suicide is not part of the conversation of many suicide prevention hotlines and groups. Rates of suicide among people with Eating Disorders are undeniably high. Action: IEDAction members asked the American Suicide Prevention Foundation and other suicide prevention organizations via FB, twitter and personal email to include screening questions regarding eating disorders in suicide risk assessments, and to take steps to be able to immediately refer to evidence based treatment should an ED be a possibility. Outcome: A few suicide prevention groups, including Lifeline (a national suicide hotline in Australia), Mind (a mental health charity in the UK), Samaritans (the main suicide helpline in the UK), Grassroots Suicide Prevention (a suicide prevention nonprofit in the UK) and the Center for Suicide Prevention in Alberta, Canada, agreed to list eating disorders as risk factors for suicide.</span></div>
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<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Hunger Strike at SLU(American university): A member of IEDAction, whose daughter attends St. Louis University, brought to our attention that a hunger strike by students, faculty and staff to protest adjunct faculty wages had been held at the university. The member advised that the university knows that there are many students on campus affected by eating disorders and also that many of their alumni are employed at McCallum Place, a nearby eating disorder treatment center. IEDAction members utilized Twitter to express concerns to both St Louis University and McCallum Place about students essentially being asked to not eat to support a wage increase for professors. In addition, the member who brought this issue to IEDAction's attention contacted McCallum Place. The Assistant to the Director was appalled and said she would send out an email to all staff to alert them about the hunger strike at the university. The member also had a very productive dialog with the Assistant VP of Student Development at the university, who was equally concerned about students being asked to not eat to protest professor wages. As a result of this conversation, the member feels confident that there will be no future hunger strikes at the university.</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">October 2015</span></div>
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<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Cambria; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span><span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">MOM March USA and Canada & Lobby Day USA. Along with NIED, Canadian members of International Eating Disorders Action and Eating Disorder Parent Support gathered at government buildings in several provinces in Canada and US Capitol on October 27, 2015 to bring awareness to eating disorders and ask for better treatment. Presentations were made, signs were displayed and members of government visited the March. Members in the USA spoke with representatives about the Anna Westin Act.</span></div>
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<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">National Eating Disorders Association Conference (NEDA). Members of International Eating Disorders Action travel from around the country to attend the National Eating Disorders Association Conference 2015 in San Diego October 1st - 3rd.</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">November 2015</span></div>
<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Members of IEDAction and the larger eating disorder community tweeted and posted on the FB of The View about the inappropriateness of the comments and concerns about making light of deadly diseases. Outcome: An on-air apology was issued and the story was picked up by the press (i.e. people.com, etc.).</span></div>
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<ul style="margin-bottom: 0pt; margin-top: 0pt;">
<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">The Renfrew Center & Gloria Steinem: At the most recent Renfrew Center conference in the USA (one of the oldest and most established treatment centers) there were some questionable choices in their conference platform and speakers. Famous feminist Gloria Steinem was their keynote and linked EDs with feminism and 'gender prisons' and a rebellion against social injustice. Members tweeted and posted on the Facebook Pages of both Gloria Steinem and Renfrew to let them know that we are not in the Dark Ages of ED anymore, that the data and research on genetics, biology and evidence based treatment saves lives; that EDs don't just affect women; that we can no longer tolerate pop psychology and dangerous messaging. To date, there has been no response from are free or Ms. Steinem.</span></div>
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<div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 10pt; margin-top: 0pt; text-align: center;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 700; text-decoration: none; vertical-align: baseline;">December 2015</span></div>
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<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Cambria; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span><span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">IEDAction members along with the advocacy community brainstorm holding a global “World Eating Disorder Action Day” to be held June 2, 2016. IEDAction will serve on a Steering Committee with 14 members from a diverse collective of eating disorder advocacy organizations across the globe. </span></div>
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<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Cambria; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span><span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">International Eating Disorders Action members have started to take action in response to the strategy put forth by celebrity chef Jamie Oliver which he claims will protect the health of British children. Members have sent concerns via Facebook, twitter, e-mail and shared current information, data and position statements. We are insisting that they review the data and evidence before venturing into dangerous territory that is NOT recommended by any of our leading global health authorities. http://internationaleatingdisorderadvocacy.blogspot.com/search/label/BMI. </span></div>
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<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: Cambria; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;"></span><span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">IEDAction mentioned in Eating Disorders: Journal of Treatment and Prevention, a peer reviewed journal in an <a href="http://www.tandfonline.com/doi/full/10.1080/10640266.2015.1113833">article</a> by a leading respected eating disorder professional addressing our concerns about conflation of body image with eating disorders as psychological illness. </span></div>
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<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Twitter campaign to insurance companies – over the course of the fall, three members of IEDAction and EDPS have treatment coverage denied by insurance companies. Several members took to Twitter and started a campaign to get treatment coverage. In all three cases, the treatment being requested was covered.</span></div>
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<li dir="ltr" style="background-color: transparent; color: black; font-family: Arial; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; list-style-type: disc; text-decoration: none; vertical-align: baseline;"><div dir="ltr" style="line-height: 1.3800000000000001; margin-bottom: 0pt; margin-top: 0pt;">
<span style="background-color: transparent; color: black; font-family: 'Times New Roman'; font-size: 14.666666666666666px; font-style: normal; font-variant: normal; font-weight: 400; text-decoration: none; vertical-align: baseline;">Whole Foods Market Action: US based health food grocery store engages in fat shaming by offering benefits to staff with lower Body Mass Index (BMI) sparking a massive social media backlash. WF continues to defend their incentive program by saying that they give employees the option to use BMI or waist-height ratio. Members have sent tweets and posted on Whole Foods FB stating that BMI is not a useful measure for assessing the health of their employees (as noted by Centers for Disease Control, USA) and has potential negative repercussions among employees who are predisposed for developing eating disorders. To date, the company has defended its policy. This action was started in October 2014 and is ongoing.</span></div>
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<br /><br /><b></b><i></i><u></u><sub></sub><sup></sup><strike></strike>Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-15125791206953094272015-12-04T08:27:00.002-08:002015-12-04T12:06:47.806-08:00Concerns about Jamie Oliver's strategy to weigh kids in school<div>
International Eating Disorders Action members have taken action in response to the strategy put forth by celebrity chef Jamie Oliver which he claims will protect the health of British children. <br />
<a href="http://www.mirror.co.uk/3am/celebrity-news/jamie-oliver-demands-children-weighed-6928178">Jamie Oliver demands children are weighed each year at school to end childhood obesity </a><br />
<br />
Members have sent concerns via Facebook, twitter, e-mail and shared current information, data and position statements. We are insisting that they review the data and evidence before venturing into dangerous territory that is NOT recommended by any of our leading global health authorities.<br />
<br />
<span style="font-size: x-small;"><a href="https://drive.google.com/file/d/0B-_k2xwZC0EEcEt6ZERRc0poWnkyalItV3pXN0MzbkVTTXRr/view">The Skinny on BMI Report Cards</a><br />
<span style="font-size: x-small;"><a href="https://drive.google.com/file/d/0B-_k2xwZC0EEdGpvcVRZcUM4U2Z1dENKMk5XamZTNGNmSTBJ/view">EDC: BMI Talking Points</a><br />
<span style="font-size: x-small;"><a href="https://drive.google.com/file/d/0B-_k2xwZC0EEOV9ZQzNHVFBhU0JzOWIwaVl2WEZlSVhFX0pv/view">Pediatrics, 2009 Nihiser: BMI in Schools</a><br />
<span style="font-size: x-small;"><a href="https://drive.google.com/file/d/0B-_k2xwZC0EEemRlNEczYkt5aURfS205MkFZV3lTdGFld0o4/view">Trading Health for a Healthy Weight: Pinhas et al case series</a><br />
<span style="font-size: x-small;"><a href="https://drive.google.com/file/d/0B-_k2xwZC0EEMlB2OTFuUnB4aF9OQnRQQVJXaWNjRmxMdVJz/view">Facts and Concerns About School-Based BMI Screening</a></span></span></span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><a href="http://www.aedweb.org/index.php/23-get-involved/position-statements/90-aed-statement-on-body-shaming-and-weight-prejudice-in-public-endeavors-to-reduce-obesity-4">Guidelines for Childhood Obesity Prevention Programs</a><br />
<span style="font-size: x-small;"><a href="http://www.aedweb.org/index.php/23-get-involved/position-statements/156-aed-opposes-bmi-reporting-and-fitnessgrams-in-schools">Position Statement: AED Opposes BMI Reporting and Fitnessgrams in Schools</a><br />
</span></span></span></span></span></span></span><span style="font-size: x-small;"><b><u><br /></u></b></span>
<span style="font-size: x-small;"><b><u>Additional articles on school-based BMI screenings:</u></b></span></div>
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<span style="font-size: x-small;"><a href="http://www.examiner.com/list/seven-sound-reasons-not-to-conduct-bmi-screening-schools?cid=db_articles" target="_blank"><span style="color: #1155cc;">http://www.examiner.com/list/</span><wbr></wbr>seven-sound-reasons-not-to-<wbr></wbr>conduct-bmi-screening-schools?<wbr></wbr>cid=db_articles</a><span style="color: #555555;"> </span></span></div>
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<a href="http://www.kevinmd.com/blog/2014/07/school-boards-fancy-health-care-providers.html" target="_blank"><span style="color: #1155cc;">http://www.kevinmd.com/blog/</span><wbr></wbr>2014/07/school-boards-fancy-<wbr></wbr>health-care-providers.html</a></div>
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<a href="http://articles.chicagotribune.com/2013-05-17/health/ct-met-bmi-backlash-20130517_1_bmi-childhood-obesity-rates-muscular-people" target="_blank"><span style="color: #1155cc;">http://articles.</span><wbr></wbr>chicagotribune.com/2013-05-17/<wbr></wbr>health/ct-met-bmi-backlash-<wbr></wbr>20130517_1_bmi-childhood-<wbr></wbr>obesity-rates-muscular-people</a></div>
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<a href="http://nypost.com/2014/05/22/nyc-says-this-girl-is-fat/" target="_blank"><span style="color: #1155cc;">http://nypost.com/2014/05/22/</span><wbr></wbr>nyc-says-this-girl-is-fat/</a></div>
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<a href="http://www.anad.org/news/anad-stands-with-aed-to-oppose-bmi-in-schools/" target="_blank"><span style="color: #1155cc;">http://www.anad.org/news/anad-</span><wbr></wbr>stands-with-aed-to-oppose-bmi-<wbr></wbr>in-schools/</a></div>
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<a href="http://www.change.org/petitions/department-of-education-california-ban-weighing-children-in-public-schools?share_id=iNcVDSDynL&utm_campaign=twitter_link_action_box&utm_medium=twitter&utm_source=share_petition" target="_blank"><span style="color: #1155cc;">http://www.change.org/</span><wbr></wbr>petitions/department-of-<wbr></wbr>education-california-ban-<wbr></wbr>weighing-children-in-public-<wbr></wbr>schools?share_id=iNcVDSDynL&<wbr></wbr>utm_campaign=twitter_link_<wbr></wbr>action_box&utm_medium=twitter&<wbr></wbr>utm_source=share_petition</a></div>
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<a href="http://www.elementsbehavioralhealth.com/featured/school-healthy-eating-programs-dangerous-for-some-children/" target="_blank"><span style="color: #1155cc;">http://www.</span><wbr></wbr>elementsbehavioralhealth.com/<wbr></wbr>featured/school-healthy-<wbr></wbr>eating-programs-dangerous-for-<wbr></wbr>some-children/</a></div>
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<a href="http://drlissakblog.blogspot.co.uk/2014/08/raising-child-in-world-of-dieting-part-i.html" target="_blank"><span style="color: #1155cc;">http://drlissakblog.blogspot.</span><wbr></wbr>co.uk/2014/08/raising-child-<wbr></wbr>in-world-of-dieting-part-i.<wbr></wbr>html</a></div>
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<a href="http://www.cnn.com/2013/09/24/opinion/navarrette-fat-letters/" target="_blank"><span style="color: #1155cc;">http://www.cnn.com/2013/09/24/</span><wbr></wbr>opinion/navarrette-fat-<wbr></wbr>letters/</a></div>
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<a href="http://bedaonline.com/WSAW2014/wsaw-2014-kids-programs-schools-carmen-cool-ma-lpc/#.VC8wjsu9KSP" target="_blank"><span style="color: #1155cc;">http://bedaonline.com/</span><wbr></wbr>WSAW2014/wsaw-2014-kids-<wbr></wbr>programs-schools-carmen-cool-<wbr></wbr>ma-lpc/#.VC8wjsu9KSP</a><span style="color: #555555;"> </span></div>
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<a href="http://salveopartners.com/fairies-unicorns-bmi/" target="_blank"><span style="color: #1155cc;">http://salveopartners.com/</span><wbr></wbr>fairies-unicorns-bmi/</a></div>
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On 2 December 2015 at 21:43, International Eating Disorder Action <span dir="ltr"><<a href="https://www.blogger.com/null" target="_blank">iedaction.global@gmail.com</a>></span> wrote:<br />
</span></span></span></span></span><br />
<blockquote class="gmail_quote" style="border-left-color: rgb(204,204,204); border-left-style: solid; border-left-width: 1px; margin: 0px 0px 0px 0.8ex; padding-left: 1ex;">
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<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">Dear Jo,</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><br /></span></span></span>
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">Thank you so much for reaching out to us . I'm copying my colleague at</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">IEDaction Jennifer Denise Ouellette as well.</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><br /></span></span></span>
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">As you are aware we have been concerned about the increased focus on</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">working with children in schools to provide information on obesity and now</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">on the statement by Jamie Oliver on in school weighing. Of course we do</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">understand that communities and countries are concerned about the health of</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">their children - and that wholesome foods are important.</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><br /></span></span></span>
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">However we are very concerned about the approach taken to achieve impact.</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">Research shows that weighing kids in schools and implementing anti-obesity</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">and weighing kids in school can lead to INCREASED rates of obesity and</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">eating disorders. It can do more harm than good .</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><br /></span></span></span>
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">In the USA, Arkansas has done anti-obesity campaigns in schools since 2002.</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">It has led to increased rates of obesity and eating disorders triggered at</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">younger ages. The CDC does NOT recommend weighing in schools.</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><br /></span></span></span>
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">Kids actually NEED more Fat and calories to prep for their growth spur. And</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">based on longevity the optimal BMI range for an adult female is 25-29 the</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">current "overweight" category. So we need to be careful in designing</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">programs to do no harm and reflect research.</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><br /></span></span></span>
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">We would very much to dialogue with you - we represent a large group of</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">parents, carers and affected people.</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><br /></span></span></span>
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">Best</span></span></span><br />
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><br /></span></span></span>
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">Amy Cunningham<span style="color: #888888;"><br />International Eating Disorder Action</span></span></span></span></div>
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On Thu, Dec 3, 2015 at 6:02 PM, Jo Creed <span dir="ltr"><<a href="https://www.blogger.com/null" target="_blank">jo.creed@jamieoliver.org</a>></span> wrote:<br />
</span></span></span></div>
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"></span></span></span><br />
<blockquote class="gmail_quote" style="border-left: 1px #ccc solid; margin: 0 0 0 .8ex; padding-left: 1ex;">
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<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-family: "arial" , sans-serif;">Dear Amy</span></span></span></span></div>
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<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><br /></span></span></span></div>
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<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">Thanks so much for writing. You are right which is why no-one is being blase about this and why Jamie has explicitly said that the issue needs to be tackled with great sensitivity.</span></span></span></div>
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<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><br /></span></span></span></div>
<div style="font-size: 12.8px;">
<div class="gmail_default" style="font-family: arial,helvetica,sans-serif; font-size: 12.8px;">
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">We absolutely appreciate your concerns on this issue, and that it is a very sensitive issue. </span></span></span></div>
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<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><br /></span></span></span></div>
<div class="gmail_default" style="font-family: arial,helvetica,sans-serif; font-size: 12.8px;">
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">As you'll know, the National Child Measurement Programme (NCMP) is something that already exists and currently takes the weight and height of children as they start school and leave school. This should be done in an anonymous and confidential way. This data is hugely important in getting nationwide statistics which are then used for public health.</span></span></span></div>
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<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><br /></span></span></span></div>
<div class="gmail_default" style="font-family: arial,helvetica,sans-serif; font-size: 12.8px;">
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">This data can also enable those carrying out the measurements to determine whether children have maintained a proper weight or are becoming, or have become, either overweight or underweight. While the data is logged in an anonymous way and not shared with the children or others in the school, there is a way for the school nurse to see if a child has become overweight or underweight and can therefore discreetly speak to the family in order to proactively help to address the issue. </span></span></span></div>
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<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><br /></span></span></span></div>
<div class="gmail_default" style="font-family: arial,helvetica,sans-serif; font-size: 12.8px;">
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">The NCMP as it is now devised is not there to demonise children about their weight and we would not be backing something that did. The point in Jamie's obesity strategy about expanding this programme is so that statistics can be gathered through children's school experience. Therefore it can be understood what is happening (currently in the UK 1 in 5 kids start primary school overweight or obese, and 1 in 3 leave primary school overweight or obese) and it also allows an opportunity to intervene if needed in order to support children in being the healthiest weight they can be.</span></span></span></div>
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<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;"><br /></span></span></span></div>
<div class="gmail_default" style="font-family: arial,helvetica,sans-serif; font-size: 12.8px;">
<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">We would never want to stigmatise any child or create any reason for eating disorders, but rather ensure that kids are happy and healthy. It's clear that a lot of work needs to be done to get this right.</span></span></span></div>
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<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">Best wishes,</span></span></span></div>
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<span style="font-size: x-small;"><span style="font-size: x-small;"><span style="font-size: x-small;">Jo</span></span></span></div>
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<b>From:</b> Amy E Cunningham <<a href="https://www.blogger.com/null" target="_blank">amy.in.dar@gmail.com</a>><br />
<b>Date:</b> <span class="aBn" data-term="goog_836769451" tabindex="0"><span class="aQJ"><span style="color: #222222;">3 December 2015 at 17:20:26</span></span></span> CAT<br />
<b>To:</b> Jo Creed <<a href="https://www.blogger.com/null" target="_blank">jo.creed@jamieoliver.org</a>><br />
<b>Cc:</b> International Eating Disorder Action <<a href="https://www.blogger.com/null" target="_blank">iedaction.global@gmail.com</a>>, "<a href="https://www.blogger.com/null" target="_blank">jdeniseouellette@gmail.com</a>" <<a href="https://www.blogger.com/null" target="_blank">jdeniseouellette@gmail.com</a>>, Peter Berry <<a href="https://www.blogger.com/null" target="_blank">peter.berry@jamieoliver.com</a>><br />
<b>Subject:</b> <b>Re: Weighing children in school</b></div>
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Greatly appreciate your response the opportunity to dialogue. </div>
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I understand your and Jamie's desires. Our concern is that there is no scientific evidence that what you are promoting has the desired benefit. I'll share studies with you here - one of which shows that parents did nothing even with info and in fact children's diets did not improve. We also know that eating disorders (which have the highest mortality rate of any psychological illness) can be triggered by inappropriately addressed school health programs. The US Centers for Disease Control does not recommend BMI at schools. The Academy for Eating Disorders has strong guidance and cautions for implementing programs and a wealth of data showing that weighing/BMI has no basis in the scientific literature for success. The Eating Disorder Coalition in the US has successfully reinforced CDCs statement.</div>
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Schools and many of us are grasping for some solution to our perceived epidemic (I acknowledge there is a need to both ensure the health of our kids genetically predisposed to ED as well as obesity) however approaching it with an intuitive approach rather than data is very dangerous. Sadly nurses and volunteers aren't well trained to address health holistically - and thus can do far more harm than good. Or at minimum nothing changes as the data suggest and that is a real waste of resources. </div>
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I would be very interested to see any data showing that school weighing works in helping kids develop overall health.</div>
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And in working with you to develop a more holistic approach to developing and maintaining health. I'm attaching some documents here for your team to review.</div>
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Warm regards,Amy </div>
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Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com2tag:blogger.com,1999:blog-7728923136858799485.post-44467663391107692852015-10-13T20:49:00.003-07:002015-12-04T11:31:57.611-08:00NEDA 2015, Sea Change: Reflections from Celia<div class="separator" style="clear: both; text-align: center;">
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<a class="irc_mil i3597" data-href="http://www.nationaleatingdisorders.org/neda-conference" data-noload="" data-ved="0CAcQjRxqFQoTCPye19v9wMgCFUfeYwodt34NPg" href="https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=0CAcQjRxqFQoTCPye19v9wMgCFUfeYwodt34NPg&url=http%3A%2F%2Fwww.nationaleatingdisorders.org%2Fneda-conference&bvm=bv.104819420,d.cGc&psig=AFQjCNFkVC4EJ00xvVIn4eyi571-7WZogw&ust=1444878412122063" jsaction="mousedown:irc.rl;keydown:irc.rlk" style="margin-left: 1em; margin-right: 1em;"><img class="irc_mi" src="http://www.nationaleatingdisorders.org/sites/default/files/Smaller_ConferenceCallForProposals_2015_SaveTheDate_Final.jpg" height="247" style="margin-top: 22px;" width="400" /></a></div>
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<i>International Eating Disorder Action members review, recap, and reflect on the #NEDA2015 Conference that took place October 1-3 in San Diego, CA</i></div>
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NEDA 2015, Sea Change: Advocates are being heard and respected!</div>
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By: Celia Robicheau</div>
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The NEDA 2015 conference in San Diego was great. It was a great opportunity to meet and hear some of the biggest names in the ED world speak about their professional views and approach to treating ED.<br />
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It was fascinating to hear of the latest research being conducted around the USA by many well-known universities. It was devastating and hopeful to hear of loss, of wins, of hope from survivors, parents and providers. One common theme I heard, was the great amount of programs and services available to sufferers around the country if only everyone COULD HAVE ACCESS TO THEM.<br />
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My overall impressions from NEDA 2015:<br />
<ul>
<li> Advocates are being heard, respected and brought to the “big kids” table. We are no longer being patted in the head in a condescending way.</li>
<li>Advocacy presence at NEDA was huge. Educated parents shared tables with professionals and I felt heard and taken into consideration.</li>
<li>Our opinions were sought out by experts, they felt that to make their programs, services and practice stronger and better it was imperative to develop them with our needs in mind.</li>
<li>Family/parents role is growing in support as key but sadly we still saw many professional bluntly dismiss the parent role.</li>
<li>Veritas, ERC and Lauradete representatives actively reached out to parents:<br /> To ask them to be part of their discussions and to ask what as parents they wanted their programs to bring to recovery. They acknowledged that treatment is relatively a short time and that parents are ones tasked to continue treatment with their children at home 24/7. Therefore, parents must have an equal role in the treatment team, they need to be part of the daily happenings. Parents themselves have to be educated, trained and supported in continuing the work at home and not left to “figure it out.” Programs that use a strengths based family system seem more successful long term. There was an overall theme of “together we can do this work”</li>
<li>Dr. S. Was once again (after ICED 2015) a disappointment. He was dismissive of the parents/caretaker/familial role, their importance in recovery, and lack of acknowledgment that regardless of sufferer age it is the bulk of care that falls on the parents/caretakers shoulders<br /> Dr. S. 's presentation was infuriating as he dismissed a mother’s experience who was brave enough to disagree with him and he was bluntly disrespectful to a sufferer who shared her story. Dr. S. also insisted (contrary to new research being done within the last 5 years) that waiting for the sufferer to want help is the only way, and that he will sit next to their beds and do nothing until they ask for help. This is maddening as we know that recovery can start and be maintained despite patient compliance or acknowledgement of illness. Waiting is not only ineffective but potentially a death sentence. It was very frightening to have a well-known and respected provider mentioning decades of research and ignore the most recent research. When we speak of scientific research, we do a historical review of evidence/data and then concentrate in the last 5/6 years of research as anything older is considered outdated. I was very saddened to look around Dr. S's presentation room and seeing so many young, right off school providers nodding and writing down every word he said. They were listening to every word of this “expert” and believing it to be “the way”.</li>
<li>There are is still a lot of awareness work to be done by advocates and professionals to create a unified front.</li>
<li>Smashing scales may be very visually powerful, however, it's unrelated to eating disorders, it doesn’t help to dispel myth, to raise awareness or to help identify early symptoms.</li>
<li>College representatives still insisted that sufferer can do recovery work while attending classes and being supported at their counseling centers. I believed this to be poor advice for someone with an active ED. Only one representative in the college presentations said that school can and should wait and to put health first.</li>
<li>We need to shout from the top of our lungs that disordered eating is NOT an eating disorder. Educated experts are mixing the two and creating confusion.</li>
<li>We really really really really need to get away from the stereotypes that feed ED myths. There is no reason to feed “the choice” and the “vanity” myths, we have a wealth of clinical research and its time to speak facts and not opinions.</li>
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In conclusion, NEDA was a great opportunity to hear and learn from the best, to advocate and to connect. It was an opportunity to see how far we have come and how far we still have to go. <br />
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<img alt="" aria-busy="false" aria-describedby="fbPhotosSnowliftCaption" class="spotlight" height="265" src="https://scontent.fsnc1-1.fna.fbcdn.net/hphotos-xap1/v/t1.0-9/12079519_1638730249719700_816780423065396128_n.jpg?oh=db9f04117d40379d0a9c59f8a1fcde2a&oe=568E8E95" width="400" /><br />
<i>*Picture taken at the UCSD Dinner*</i>Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-18768834526719576672015-10-13T20:34:00.002-07:002015-12-04T11:32:10.565-08:00NEDA 2015, Sea Change: Reflections from JD<div class="separator" style="clear: both; text-align: center;">
<a class="irc_mil i3597" data-href="http://www.nationaleatingdisorders.org/neda-conference" data-noload="" data-ved="0CAcQjRxqFQoTCPye19v9wMgCFUfeYwodt34NPg" href="https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=0CAcQjRxqFQoTCPye19v9wMgCFUfeYwodt34NPg&url=http%3A%2F%2Fwww.nationaleatingdisorders.org%2Fneda-conference&bvm=bv.104819420,d.cGc&psig=AFQjCNFkVC4EJ00xvVIn4eyi571-7WZogw&ust=1444878412122063" jsaction="mousedown:irc.rl;keydown:irc.rlk" style="margin-left: 1em; margin-right: 1em;"><img class="irc_mi" src="http://www.nationaleatingdisorders.org/sites/default/files/Smaller_ConferenceCallForProposals_2015_SaveTheDate_Final.jpg" height="247" style="margin-top: 22px;" width="400" /></a></div>
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<i>International Eating Disorder Action members review, recap, and reflect on the #NEDA2015 Conference that took place October 1-3 in San Diego, CA</i></div>
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NEDA 2015, Sea Change: Family involvement, marginalized groups, and evidence based treatment</div>
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By: JD Ouellette<br />
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I am just starting to feel qualified to “rate” a conference
and I was at NEDA 2014 in San Antonio last year, so this was my second NEDA
conference. I have to give major props for organization, warmth of hosting,
food, timing, locale (my hometown of San Diego has never been more inviting and
visually stunning than over those few days) and the lineup of session
offerings. <br />
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The passion of those at an ED conference is one of the best
things about even if you don’t see eye-to-eye with someone on approach. The
heartfelt tribute to Lynn Grefe and her husband’s sharing of some of her words
of wisdom was stirring—I am sure her illness and loss were being sorely felt
during the planning of this conference and Claire Mysko and NEDA did a great
job in San Diego. <br />
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I loved that UCSD and others brought so much evidence-based,
scientific information and so many people were asking great questions. For the
science-minded among us spending time with Drs. Hill, Frank and Kaye among
others is always a treat. <span style="mso-spacerun: yes;"> </span>Psy.D. Lauren
Mulheim and RD Katie Grubiak gave an interesting, solid presentation on
nutrition and the refeeding process in FBT that was also fun to tweet—good
slides work well on social media. <br />
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What I have seen since I have been a parent attending these
conferences is increased respect for and interest in what parents have to say
(based on how the pioneering parent advocates talk about things when they first
began showing up). I have taken to saying, “Temperamental traits for someone
who develops an eating disorder include being intelligent and driven. We are
their parents! Many of us have these same traits. Let us help!” A growing
number of researchers, clinicians and advocates give positive feedback to
family involvement in all aspects of the eating disorders community. <br />
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It was gratifying to see so many fathers; I believe having
men involved more is a key to advancing the movement overall. I’ve never been
in a work environment that wasn’t improved by being co-ed.<span style="mso-spacerun: yes;"> </span>Yay to Don Blackwell and others for leading
the charge and for more fathers and partners showing up to learn. The same is
true for the representatives of marginalized groups doing the same thing as we
parents and other affected individuals are—showing up and bringing our smarts and
passion with us. <br />
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Speaking of marginalized groups . . . it’s good to have
goals and a common goal in the movement is the inclusion of more marginalized
voices—I would love it if NEDA would set a goal to not have a white, female
keynote speaker for the next five years. Yes, this would preclude some worthy
speakers, but it would do so much to change the face of eating disorders. <br />
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This year, as last year, the Family Panel was the most
fulfilling, moving, healing portion of the program.<span style="mso-spacerun: yes;"> </span>Part of what makes it fulfilling is the focus
on a variety of lived experience. I would love to see that come to the keynote
speech. <br />
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While I am writing my wish list, I would love it not be
heavily focused on body image—I do think there is great danger that society is
still interpreting this as causal and since they also have body image issues,
but not an eating disorder, they are prone to view eating disorders as
revolving around choice and vanity to a great extent.<span style="mso-spacerun: yes;"> </span>I think that affects funding in the way that
having many (but not all) lung cancer sufferers be smokers hurts research
funding even though non-smoker lung cancer deaths put it in the top 10 of
cancer killers.<br />
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Part of the reason to attend a conference is to meet people,
have conversations and forge relationships. I was able to connect in person
with folks I have been on conference calls with or know only through
Twitter.<span style="mso-spacerun: yes;"> </span>The other reason is to be a
beacon of hope to other parents attending the conference looking for answers
for their child. There was plenty of time for that as well as connecting with
those you work with remotely, but are rarely able to connect with in
person.<span style="mso-spacerun: yes;"> </span>All of this was fantastic to the
point of me still being exhausted a week later!<br />
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There was a bit of brouhaha with a physician who is arrogant
and sexist enough to consider confrontation with women to be publicly
categorized as “misunderstood, ignorant squawking.” You can call me names if
you like, but please do so with the words you would use on a male. This same
individual posted a truly horrifying and disrespectful image.<span style="mso-spacerun: yes;"> </span>NEDA’s response when informed of this (not by
me) was gratifyingly concerned. <br />
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Several EDPS/IED members were able to chat over drinks with
Jillian Lampert from the EDC who was warm and interested and receptive to our
concerns. We felt heard and that’s what it all comes down to when building a
coalition. <br />
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For many of us beating the evidence-based drum, it’s not
that we don’t want anyone to look at a variety of models; we want to be sure of
the scientific rigor in evaluating programs and push for some universally
accepted, evidence-based protocols that reflect recent research findings. <span style="mso-spacerun: yes;"> </span>We are hearing amazing things about Stanford’s
Remote FBT Delivery study.<br />
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Whenever I'm attending a gathering of parent advocates—at
places like FEAST, UCSD, ICED and NEDA conferences and the March and Lobby
Day--I am blown away by the passion and desire to bring change and the empathy
among all involved. I am proud of what we are doing and I think things are
poised to change. I meet researchers and clinicians who are rock stars in my
world—the ones helping people now and in the future. <br />
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Also, shout out to UCSD for knowing how to throw a party!
Our own Julia Fuentes and Lisa Springer got to go gushing fan girl on their two
conference favorites, Dr. Walk Kaye and Dr .Guido Frank—both focused on
neurobiology. <span style="mso-spacerun: yes;"> </span><br />
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Circling back to the Family Panel, our own Faith Yesner was
a phenomenal presence. With warmth, grace and humor she detailed her path to
advocacy and encouraged others to get involved, if only from your computer with
social media actions. Faith has been lobbying for several years and feels her
advocacy is a form of self-care—it’s important to do something and amazing
friendships are forged when passions align. <br />
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As Margaret Mead said, “Never doubt that a small group of
thoughtful, committed citizens can change the world; indeed it is the only
thing that ever has.” There are more than a few thoughtful citizens in the
world of ED advocacy—we are many and if we can unify we can get evidence-based
treatment delivered earlier in the game and to more people.<span style="mso-spacerun: yes;"> </span>To recovery! <br />
<img alt="" aria-busy="false" aria-describedby="fbPhotosSnowliftCaption" class="spotlight" height="400" src="https://scontent.fsnc1-1.fna.fbcdn.net/hphotos-xta1/t31.0-8/12080252_10207685744251918_2496419892364760809_o.jpg" width="400" /><br />
<i>*Picture taken in Balboa Park*</i></div>
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Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-14377761811465421362015-10-13T20:17:00.003-07:002015-12-04T11:32:19.636-08:00NEDA 2015, Sea Change: Reflections from Julia<div class="separator" style="clear: both; text-align: center;">
<a class="irc_mil i3597" data-href="http://www.nationaleatingdisorders.org/neda-conference" data-noload="" data-ved="0CAcQjRxqFQoTCPye19v9wMgCFUfeYwodt34NPg" href="https://www.google.com/url?sa=i&rct=j&q=&esrc=s&source=images&cd=&cad=rja&uact=8&ved=0CAcQjRxqFQoTCPye19v9wMgCFUfeYwodt34NPg&url=http%3A%2F%2Fwww.nationaleatingdisorders.org%2Fneda-conference&bvm=bv.104819420,d.cGc&psig=AFQjCNFkVC4EJ00xvVIn4eyi571-7WZogw&ust=1444878412122063" jsaction="mousedown:irc.rl;keydown:irc.rlk" style="margin-left: 1em; margin-right: 1em;"><img class="irc_mi" src="http://www.nationaleatingdisorders.org/sites/default/files/Smaller_ConferenceCallForProposals_2015_SaveTheDate_Final.jpg" height="247" style="margin-top: 22px;" width="400" /></a></div>
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<i>International Eating Disorder Action members review, recap, and reflect on the #NEDA2015 Conference that took place October 1-3 in San Diego, CA</i></div>
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NEDA Conference: discussion of key neurobiological findings<br />
By: Julia Fuentes<br />
<br />
NEDA was the first eating disorders conference I attended. I went with the goals of learning more about the advocacy world and hearing the newest information in the neurobiology arena. I attended the neurobiology Q & A session with Dr. Walter Kaye and Dr. Guido Frank. Hearing this information from two of the leading experts in the field was very refreshing and empowering. The main takeaways I got from the session were numerous.<br />
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In regards to biology and neurobiology: The field vastly oversimplified what the genome project would contribute to the understanding of the field. We now know there are very few consistent genes in anorexia and it will take years to find a gene pattern. What we do know is that imaging studies have shown that there are persistent alterations in the reward centers of the brains of people who have recovered from anorexia. The studies found a commonality in the centers in the brain dealing with self discipline, organization and wanting structure which appear to over ride reward centers. Also, the sensitivity to error is higher acting than the sensitivity to reward in those with and recovered from anorexia. The common traits seen in many with anorexia are hard wired in the basal ganglia and the upset of gonadal steroids exacerbates these traits. Other key neurobiological findings included a discussion that the higher system (cortex) and lower systems (more primitive brain such as basal ganglia, hypothalamus, etc) in the brain do not communicate as well in those with a history of anorexia and to train the brain to communicate better it takes 3-6 months for a behavior to become a habit in uncomplicated cases. We also know from the research that hypothalamus issues and hormone imbalances seem to remit with true weight restored recovery. Another finding was that those recovered from anorexia have more white matter tract (the myelinated tracts that move information along) connectivity and there was a positive correlation between length of illness and increased number of fibers. The reintroduction of fats back into the diet has been shown to have a major impact on the lipid wall of the brain in terms of dopamine functioning. One last biological aspect that was discussed was that the research on the microbiome in the gut needs way more research before conclusions can even be speculated because we have to replicate the 100 millions cells in the microbiome.<br />
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In this session research funding was also discussed and Dr. Kaye stated very firmly that research funding comes down to advocacy and groups need to lobby congress for neurobiological research funding. He stated how other fields have a leading authority or groups who raise funds for leading investigators but that this is not happening in the field of eating disorders. I was so proud of my fellow recovered advocate Lisa Springer, for asking Dr. Kaye and Dr. Guido if they thought funding was affected due to eating disorders being seen as disease of choice and vanity, to which they unequivocally stated yes. They went on to say that the extraordinary cost of treating eating disorders is due to several large for-profit centers with very little research based treatment methods causing this. I was more heartened later in the evening when Lisa and I were having a fan girl moment at the UCSD dinner/cocktail event talking with Dr. Kaye and Dr. Guido and they brought up the insightfulness of her question and commend her. Her question led to further discussions during the Q & A session in which Dr. Kaye and Dr. Guido stated how eating disorders need to be renamed "reward center disorders" so that the stigma is taken away and becomes a nonissue and all ill conceived notions regarding the whys of anorexia can be forgotten. <br />
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Outside of the sessions, I had the opportunity to meet some of the most amazing advocates and see so much of beautiful San Diego. The advocates I met are truly the most kind souled, intelligent minded, hardest working humans I ever met. To steal the word tribe from JD, meeting other advocates in person is like finding a lost tribe that speaks the same language as you. I personally never intended to get into ED advocacy, but almost one year ago today, I randomly saw a tweet about DBT dolphining while advocating for cetaceans on Twitter, which led me to the latest neurobiology information on eating disorders that sparked my desire for ED advocacy. I am glad I was able to attend the conference because hearing first hand the most up-to-date neurobiology information from two of the leading experts in the field drove home the point that eating disorders are biologically based illnesses not unlike cancer. The magic of collaborating with others and the entire experience definitely strengthened my resolve to be a better advocate.<br />
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<i>*Advocates meeting, many for the first time in person*</i><br />
<b></b>Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-79808418208698834872015-08-30T12:51:00.003-07:002015-12-04T11:33:10.641-08:00Global Partnerships and the MOM MarchIED considers eating disorders to be a global scourge and thinks our best hopes for moving forward is to support efforts on both local, national and international levels. The issues with research and treatment access and coverage are common ground; any system that improves becomes a blueprint for other systems.<br />
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As pragmatists, we believe insurers and National Health Systems will both improve services once it becomes clear it is in their financial best interests to do so. Raising our voices globally, and metaphorically linking arms as we go forth to EDucate and legislate is something we are proud to do with the wonderful folks at NIED in Canada.<br />
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Please share this with any other groups you think would willing and able to support this effort!<br />
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<br />Jennifer Denise Ouellettehttp://www.blogger.com/profile/07278301590843811018noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-9977474174127680922015-08-06T22:11:00.001-07:002015-12-04T11:33:22.041-08:00M.O.M. March Now in Canada!<br />
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Get More Details And Make a Donation At <a href="http://marchagainsted.com/">MarchAgainstED.com</a>!</div>
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<br />Jennifer Denise Ouellettehttp://www.blogger.com/profile/07278301590843811018noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-9355194839612927742015-07-22T17:06:00.000-07:002015-12-04T12:09:30.447-08:00Field Review: Proposed BHC Standards for Eating Disorders Care, Treatment, or Services<span style="background-color: white; color: #222222; font-family: "arial" , sans-serif; font-size: 17.6000003814697px;">Field Review: Proposed BHC Standards for Eating Disorders Care, Treatment, or Services</span><br />
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<span style="font-size: x-small;"><span style="background-color: white; color: #222222; font-family: "arial" , sans-serif;">Please see the official invite </span><span style="color: #222222; font-family: "arial" , sans-serif;"><a href="http://us9.campaign-archive1.com/?u=88d903594a3d572ceab62bd7c&id=3d9a934ecf&e=b85f580c93">HERE</a>.</span></span><br />
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<span style="font-size: x-small;"><span style="background-color: white; color: #141823; font-family: "helvetica" , "arial" , sans-serif; line-height: 19.3199996948242px;">Our own Amy Cunningham was asked to be on the Academy for Eating Disorders Advisory board. The chair of the board</span><span style="background-color: white; color: #141823; font-family: "helvetica" , "arial" , sans-serif; line-height: 19.3199996948242px;"> </span><span style="background-color: white; color: #141823; font-family: "helvetica" , "arial" , sans-serif; line-height: 19.3199996948242px;">Karine Berthou, along with Exec Director Elissa Myers - are spearheading an initiative to include many more groups in their database.</span></span><br />
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<span style="font-size: x-small;">The Global Communication Network will help bring groups from far reaching but critical areas into the network. ED isn't just in the health sector! Mental health, emergency medicine, school health, <span class="text_exposed_show" style="display: inline;">suicide hotlines, university Greeks, coroners associations and on and on.</span></span></div>
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<span style="font-size: x-small;"><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif;"><span style="line-height: 19.3199996948242px;">IED Action needs your help to provide valuable input!</span></span><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; line-height: 19.3199996948242px;"> Can you please provide input into the GCN with the names and websites of groups we should include - formal and informal. Join us on </span><span style="background-color: transparent; line-height: 19.3199996948242px;"><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif;"><a href="https://www.facebook.com/groups/IEDAction/">facebook</a> </span></span><span style="color: #141823; font-family: "helvetica" , "arial" , sans-serif; line-height: 19.3199996948242px;">to add your valuable input or email iedaction.global@gmail.com</span></span></div>
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<tr><td class="mcnTextContent" style="color: #606060; font-family: Helvetica; font-size: 15px; line-height: 22.5px; padding: 9px 18px;" valign="top"><span style="font-size: 12px;"><span style="font-family: "arial" , "helvetica neue" , "helvetica" , sans-serif;"><span style="color: black;">This month the Joint Commission, an independent, not-for-profit organization that accredits and certifies more than 20,500 health care organizations and programs, is proposing new standards specific to eating disorders care, treatment, and services, and is seeking input from the field. Comments on their proposed requirements will be gathered through August 17, 2015.<br /><br />The standards have been developed by a special Task Force, and AED member and co-chair of the AED Medical Care Standards Committee, Dr. Mark Warren, has graciously been representing AED on that Task Force. AED has received a specific invitation to comment on the Standards, and the AED MCSC will be recommending a specific AED Board approved response to the new Standards, and as they prepare their recommendations, they would be interested in hearing any observations you may have on them.<br /><br />We are pleased to report that as a reflection of the outstanding representation of AED by Dr. Warren, and the important work of the MCSC, AED has received a formal invitation from Dr. Chassin, Joint Commission President & CEO, to join the Joint Commission's Behavioral Health Care Professional and Technical Advisory Committee (PTAC) for the 2016-17 PTAC term effective January 1, 2016 through December 31, 2017. The AED Board will be considering this opportunity and acting upon it in September.<br /><br />If you have comments on the proposed standards, send them directly to the Joint Commission as per </span><a href="http://www.jointcommission.org/standards_information/field_reviews.aspx?StandardsFieldReviewId=5nPAxGImoFDpYPOaalENAxdCQtuekDRh74RjvPS%2fqOo%3d" style="color: #6dc6dd; word-wrap: break-word;" target="_blank"><span style="color: blue;">the instructions on their website</span></a><span style="color: black;">, with a copy to the </span><a href="mailto:ellissa@elissamyers.com" style="color: #6dc6dd; word-wrap: break-word;" target="_blank"><span style="color: blue;">AED MCSC</span></a><span style="color: black;">, or just send your comments directly to the</span><span style="color: blue;"></span><a href="mailto:ellissa@elissamyers.com" style="color: #6dc6dd; word-wrap: break-word;" target="_blank"><span style="color: blue;">AED MCSC</span></a><span style="color: black;"> if you prefer.<br /><br />Together we are making progress!<br /><br /><img align="none" height="86" src="https://gallery.mailchimp.com/88d903594a3d572ceab62bd7c/images/93a9d3a6-de7b-466a-9772-4cdcdab6d894.png" style="border: 0px; height: 86px; margin: 0px; outline: none; width: 200px;" width="200" /><br />Dr. Carolyn Becker<br />Professor of Psychology at Trinity University in San Antonio, TX<br />2015-2016 President of the Academy for Eating Disorders</span></span></span></td></tr>
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Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-27729325702354403222015-07-21T21:45:00.000-07:002015-12-04T12:09:51.488-08:00Conference call: IED Action, Aspire and the Butterfly Foundation<br />
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IED Action, Aspire and the Butterfly Foundation<br />
Summary of Conference Call<br />
July 9, 2015</div>
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In Attendance:</div>
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Christine Morgan, CEO/Director, the Butterfly Foundation<br />
Taryn Harris, Communications Coordinator, The Butterfly Foundation<br />
Cate Sangster, ASPIRE<br />
Amy Cunningham, IEDACTION<br />
Jennifer Ouellette, IEDACTION</div>
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As a result of the joint social media campaign IEDAction and several other organizations* undertook in response to the recent Butterfly Foundation “Don’t Dis My Appearance” national awareness and fund raising campaign, a phone call took place July 9 between Christine Morgan and Taryn Harris of Butterfly Foundation and Cate Sangster of ASPIRE and Amy Cunningham and JD Ouellette of IEDAction.</div>
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Prior to the phone call there was consultation among all groups involved as well as a large contingent of Australians. It was decided the focus of the call should be to recognize the excellent work Butterfly Foundation is undertaking in Australia while expressing concerns about the issue behind our counter-campaign—what we see as an unhelpful over-focus on body image as a cause of eating disorders.**</div>
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We are pleased to report the conversation was amicable, respectful and fruitful. Ms. Morgan was very open to listening to our concerns and we were appreciative of information she shared about the work Butterfly is engaged in and their long-standing and continuing interest in collaborating with a range of Australians with lived experience with eating disorders.</div>
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Our main point is that while body image is but one of many environmental influences that may combine with a person’s genetic predisposition and lead to an eating disorder, it is given a great deal of funding and is perceived as “the” cause of eating disorders (even when it is not an organization’s intent to send this message).</div>
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Ms Morgan noted that there is little government or philanthropic funding for either negative body image issues or eating disorders treatment in Australia, and it is one of Butterfly’s commitments to increase funding levels and understanding of the complexities of eating disorders and their contributory factors using a multi-faceted approach that includes the use of evidence-based advocacy to government, awareness campaigns, promotion of clinical and social economic research, delivery of education programs in community and schools, as well as support and treatment services in-community and in-hospitals.</div>
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Additionally, we believe this focus on body image maintains public perception that eating disorders are disorders of choice and vanity, which has a detrimental effect on the will of the public at large to fairly fund the treatment and research of eating disorders, as well as giving a false sense of security to families whose children do not struggle with body image.</div>
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Ms. Morgan was very receptive to our concerns and our feedback that while the intentions of campaigns like the “Dis” campaign are laudable, such campaigns may miss the mark in raising a full awareness about eating disorders and the role of genetics and other causal factors.</div>
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She understood that we think there are other areas we feel the public needs to be educated upon such as the genetics of eating disorders and warning signs. We had wonderful common ground on the topic of raising awareness that males are also affected by eating disorders and that there are a wide range of eating disorders in addition to anorexia and bulimia.</div>
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She heard our concern that many of us with lived experience felt the “Dis” campaign simplified both the cause and treatment of eating disorders with an implication that kindness was the answer. We discussed possible conflation with the body image issues present after the onset of an eating disorder being seen as causal and with recovery work needed on that aspect being wrapped in body image work that is commonly perceived as eating disorder prevention.</div>
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Actions that will be taken as a result of this call are that Cate Sangster and Christine Morgan will discuss future collaborations with the stakeholders from Australia who influenced this action. As Cate said on the call, Butterfly is doing some amazing work. IED, Aspire, et al are eager to both support and influence the direction of future endeavors.</div>
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Our collective is remarkably consistent across groups and individuals with elevating access to treatment, physician education/training and research funding equity to the forefront of public discussion and these are goals we share with many organizations. What we hope to do with our campaigns and conversations such as this one is ensure that new voices are heard alongside those who have been in the trenches for a long time.</div>
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New voices and new perspectives can often add to the conversation in a way that propels a movement forward. That is our mission and our hope—that by speaking up we can challenge the status quo and provide insights that come from seeing issues from a different angle and through a lens that is unique to those outside the long-established structure.</div>
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Thanks again to Christine Morgan and Butterfly for being open to what we consider to be an important and potentially transformative dialogue that recognizes we all have the same long-term goals: fewer people needlessly suffering and dying from treatable illnesses.</div>
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* International Eating Disorder Action, Eating Disorder Parent Support, Aussie Support Group for Parents of Children with an Eating Disorder, The Dirty Laundry Project, Beating Disorders, Adults Supporting Peers in Recovery from Eating Disorders (ASPIRE).</div>
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** IED et al “stipulated” to body image as an environmental cause of eating disorders for the purpose of having a productive conversation. As an organization we are not convinced there is a body of proof that body image work prevents eating disorders).</div>
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Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com1tag:blogger.com,1999:blog-7728923136858799485.post-90076298646776004732015-06-14T09:14:00.002-07:002015-12-04T12:10:10.864-08:00Dialogue with The Butterfly Foundation<strong><em>The following is open dialogue IED Action is having with The Butterfly Foundation following the collaborative <a href="http://internationaleatingdisorderadvocacy.blogspot.com/2015/06/letter-to-butterfly-foundation.html">letter</a> sent out in response to their DIS campaign. We are proceeding with hope and expectation for a positive response.</em></strong><br />
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On Wednesday, June 3, 2015, Christine Morgan <<a href="mailto:christine@thebutterflyfoundation.org.au" target="_blank"><span style="color: #1155cc;">christine@<wbr></wbr></span>thebutterflyfoundation.org.au</a><span style="color: #555555;">> wrote:</span><br />
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Dear Jennifer and supporters of International Eating Disorder Advocacy,<u></u><u></u></div>
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There are more than 943,0001 Australians in 2015 requiring treatment for a clinical eating disorder– with less than 25 per cent accessing treatment. At the end of 2014 Deloitte Access Economics calculated that eating disorders costs Australia $69.7 billion. The Australian Government has only just begun to recognise eating disorders as a serious mental illness, and understand the contributory behaviours, environmental and genetic predetermined elements that are the cause of eating disorder. Butterfly Foundation is more than aware of day to day experiences of people living with eating disorders, and is also painfully aware of the amount of ‘campaign fatigue’ that exists around issues based fund raising and awareness campaigns, and we sought to break through this fatigue and focus on one of the detrimental environmental elements for a national campaign.<u></u><u></u></div>
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In no way is Butterfly ‘dissing’ those impacted by eating disorders. We know eating disorders are not a lifestyle choice, they are serious psychiatric illnesses. Those suffering have not chosen to do so and deserve access to optimal treatment. Butterfly is devoted to fighting for the rights of those with eating disorders to be recognised and responded to within the public and private health systems, and for all those impacted to have access to the treatment and support they need. <u></u><u></u></div>
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There is evidence that prevention initiatives and public education on health issues require a multi-strand approach. Placing health promotion messages in the public space, such as what has been done with the Don’t Dis My Appearance campaign, is just one of a number of communication strategies that Butterfly uses to increase awareness of eating disorders and to help bring about the desired outcomes of reduced risk, reduced stigma and earlier identification and intervention. <u></u><u></u></div>
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This particular campaign highlights the preventative health value of a positive body image. As you have mentioned, the factors that contribute to the development of an eating disorder are complex and include a combination of genetic vulnerability, psychological factors and socio-cultural influences. While certainly not the experience of all people with an eating disorder, research indicates that body dissatisfaction, low self-esteem and dieting behaviour do play a significant role for many people in the development of eating disorders – and with body image being one of the top three concerns for young people in Australia, this is not something we can ignore. <u></u><u></u></div>
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This campaign has nothing to do with vanity or suggesting that these illnesses are a lifestyle choice, but everything to do with rejecting language which reinforces appearance-based values<b>.</b> The aim of this campaign is to highlight how body shaming and appearance-based judgement can contribute to negative body image and the development of an eating disorder and to empower people to speak out and say ‘it is NOT ok to judge me by my appearance’. This is relevant not only to the general community it, but in particular to anyone who is suffering from an eating disorder as we know that one of the serious myths is that you can diagnose an eating disorder by physical appearance. People who visit our campaign website will read that eating disorders are very serious mental illnesses with the highest mortality rate of all psychiatric illnesses. <u></u><u></u></div>
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This campaign was developed in consultation with internationally regarded clinicians and body image experts working with the Butterfly Foundation. It has also been supported by people battling eating disorders. Butterfly Foundation’s commitment to raising awareness of eating disorders and seeking increased financial and health system support for those suffering with these illnesses is unflinching.<span style="color: #1f497d;"><u></u><u></u></span></div>
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Please be assured that we hear and understand your comments and concerns. We appreciate your focus and attention on this critical issue and share your dedication to ensuring a better future for all people living with eating disorders. <u></u><u></u></div>
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Kind regards<u></u><u></u></div>
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Christine Morgan<span style="color: #1f497d;"><u></u><u></u></span></div>
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<b><span lang="EN-US" style="color: #695f97;">Christine Morgan<u></u><u></u></span></b></div>
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<span lang="EN-US" style="color: #695f97; font-size: 10pt;">CEO / Director, The Butterfly Foundation<u></u><u></u></span></div>
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<span lang="EN-US" style="color: #695f97; font-size: 10pt;">National Director, National Eating Disorders Collaboration<br /> 103 Alexander Street Crows Nest NSW 2065<br /> D: 02 8456 3900 | Office: 02 9412 4499<u></u><u></u></span></div>
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<span lang="EN-US" style="color: #695f97; font-size: 10pt;">M: 0419 429 225<br /> E: <a href="https://www.blogger.com/null"><span style="color: #222222;">christine@<wbr></wbr></span>thebutterflyfoundation.org.au</a><u></u><u></u></span></div>
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<span lang="EN-US" style="color: #695f97; font-size: 10pt;">W: <a href="http://www.thebutterflyfoundation.org.au/" target="_blank"><span style="color: #1155cc;">www.thebutterflyfoundation.<wbr></wbr></span>org.au</a> I <a href="http://www.nedc.com.au/" target="_blank">www.nedc.com.au</a><u></u><u></u></span></div>
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<b><span lang="EN-US" style="color: #695f97;">National Support Line: 1800 ED HOPE (1800 33 4673)</span></b></div>
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<span alt="Wed, Jun 3, 2015 at 8:07 AM" class="g3" id=":s3" title="Wed, Jun 3, 2015 at 8:07 AM">Jun 3 (11 days ago)</span><br />
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Dear Christine,<br />
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Thank you for the reply to the concerns about your campaign that we posted on Facebook and Twitter. We've tried to engage several times in the past to share information and strategies so are very pleased to have a direct contact at this juncture.</div>
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We have shared your response with the many partners, carers and survivors in our network and will revert soon with a reply and some additional queries. We are 100% volunteer and have members in Australia and all over the world - we appreciate the many good things you've accomplished and want to work more closely with you and other similar organsiations. That said we are cognizant that limited resources are available and we feel strongly that any public campaigns or activities addressing the real needs for those with or predisposed to eating disorders must be based in science and have impact.</div>
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Thank you again and we shall revert shortly. </div>
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Amy Cunningham </div>
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International Eating Disorder Action</div>
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Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-38702337083638865352015-06-11T17:59:00.000-07:002015-12-04T12:11:00.023-08:00Letter to The Butterfly Foundation<div class="s2" style="margin-bottom: 0px; margin-top: 0px;">
<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s3">Dear </span><span class="s3">Ms. Morgan</span><span class="s3"> and the Butterfly Foundation </span><span class="s3">T</span><span class="s3">eam,</span></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s3">Thank you for responding to our request for dialogue.</span><span class="s3"> </span><span class="s3">As mentioned in our initial conversation, </span></span><a href="file:///C:/Users/JOuellette/Downloads/iedaction.weebly.com" tabindex="-1" target="_parent"><span class="s4" style="font-family: inherit; text-decoration: underline;">International Eating Disorder Action</span></a><span style="font-family: inherit;"><span class="s3"> </span><span class="s3">(IEDAction) </span><span class="s3">is a growing </span><span class="s3">collective of over 2000 parents</span><span class="s3">, carers and survivors</span><span class="s3">. O</span><span class="s3">ur goals </span><span class="s3">are to correct misinformation about eating disorders in the media and the general population, among healthcar</span><span class="s3">e systems and insurers and with</span><span class="s3"> eating disorders advocacy an</span><span class="s3">d treatment groups themselves. </span><span class="s3">We also advocate for evidence-based systems and treatment providers and to include support for research, training of providers, accreditation of services and expansion of early identification and evidence-based treatment approaches including family based treatment. </span></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s3">Prior to </span><span class="s3">IEDAction’s establishment</span><span class="s3">, many of us were the target audience for </span><span class="s3">efforts </span><span class="s3">such as the Butterfly Foundations “D</span><span class="s3">is</span><span class="s3">” </span><span class="s3">campaign. </span><span class="s3">Unfortunately</span><span class="s3"> such campaigns did not improve our understanding of eating disorders</span><span class="s3"> or access to treatment. </span><span class="s3">Instead </span><span class="s3">we now realize </span><span class="s3">these </span><span class="s3">campaigns trivialize </span><span class="s3">eating dis</span><span class="s3">orders and in fact undermine</span><span class="s3"> efforts to ensure corre</span><span class="s3">ct information about these life-</span><span class="s3">threatening illnesses is broadly disseminated and they potentially undermine our collective efforts toward a</span><span class="s3">co</span><span class="s3">mprehensive national response; h</span><span class="s3">e</span><span class="s3">nce our concern with the recent</span><span class="s3"> Butterfly Foundation campaign. </span></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s3">We appreciate your desire to improve access to treatment and care services. However we remain concerned that Butterfly continues to conflate body image issues with the real needs of </span><span class="s3">the eating disorder community. </span><span class="s3">It is our stance</span><span class="s3"></span><span class="s3">that conflating societal</span><span class="s3">ly-normed behaviors</span><span class="s3"> such as disordered eating and negative body image with the serious genetic, biological, psychosocial illnesses that are eating disorders is damaging. </span></span><a href="https://www.blogger.com/null" name="_GoBack" tabindex="-1"></a><span style="font-family: inherit;"><span class="s3">While we understand that Butterfly includes Body Image as part of its overall mission and we support promoting positive body image as a </span><span class="s5" style="font-weight: bold;">universal </span><span class="s3">goal, promoting it as eating disorder prevention is not supported by research.</span></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s3">Our position is that </span><span class="s3">body image and “feel good” campaigns should not be intermixed with true advocacy about eating disorders</span><span class="s3">,</span><span class="s3"> </span><span class="s3">and that </span><span class="s3">such campaigns diminish the very real dai</span><span class="s3">ly struggles of those impacted. </span><span class="s3">We feel that an eating disorder organization such as Butterfly </span><span class="s3">Foundation </span><span class="s3">should focus on the priority needs articulated by the affected population</span><span class="s3">. </span><span class="s3">This includes a) public education on eating disorders with accurate information</span><span class="s3"> including the fact that EDs are biologically based mental illnesses with strong genetic influence; </span><span class="s3">b) </span><span class="s3">focus on ensuring diagnostic and treatment services; </span><span class="s3">c) </span><span class="s3">decreasing stigma around eating disorders by promoting the recently released by the </span></span><a href="http://www.aedweb.org/web/index.php/25-press-releases/163-press-release-aed-releases-nine-truths-about-eating-disorders?quot%3b=" tabindex="-1" target="_parent"><span class="s6" style="font-family: inherit; text-decoration: underline;">Academy of Eating Disorders Nine Truths About Eating Disorders</span></a><span style="font-family: inherit;"><span class="s3">. </span><span class="s3">(AED, 2015).</span></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s3">If </span><span class="s3">the only</span><span class="s3"> </span><span class="s3">information the general population receive</span><span class="s3">d</span><span class="s3"></span><span class="s3">about eating disorders came from the Butterfly Foundation </span><span class="s3">they might very well</span><span class="s3"> believe that the </span><span class="s3">main factor for developing an </span><span class="s3">eating disorder</span><span class="s3"> is</span><span class="s3"> negative body image</span><span class="s3">. We know that this is not true. We also know that heritability for eating disorders is high – 60% o</span><span class="s3">r</span><span class="s3"> </span><span class="s3">more cases have </span><span class="s3">genetic underpinnings</span><span class="s3">. (Bulik, ICED Boston, 2015)</span><span class="s3">. </span><span class="s3">T</span><span class="s3">o date there is no</span><span class="s3"> </span><span class="s3">scientific </span><span class="s3">evidence</span><span class="s3"> to suggest eating disorders are caused by body image concerns.</span><span class="s3"> </span></span><span class="s3"><br /></span><span class="s3"><br /></span><span style="font-family: inherit;"><span class="s3">While</span><span class="s3"> many people have body dissatisfaction issues and disordered eating, </span><span class="s3">very few</span><span class="s3"> develop clinical </span><span class="s3">eating disorders. </span><span class="s3">“Love </span><span class="s3">your body" and "don't dis on appearance" </span><span class="s3">may be </span><span class="s3">great campaigns for the welfare of the general public, these messages—</span><span class="s3">especially </span><span class="s3">presented by</span><span class="s3"> an eating disorder organization—do nothing to further public understanding of eating disorders </span><span class="s3">being genetic, biological brain-</span><span class="s3">based illnesses. </span><span class="s3"></span></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s3">Campaigns such as yours are undertaken with good </span><span class="s3">intentions;</span><span class="s3"> however as the affected community we strongly feel</span><span class="s3"> they do more harm</span><span class="s3"> than good</span><span class="s3">. </span><span class="s3">They detract </span><span class="s3">from asking governments to ensure</span><span class="s3"> their mental health budgets are adequ</span><span class="s3">ate to treat eating disorders. </span><span class="s3">They detract </span><span class="s3">from our requests to </span><span class="s3">medical and nursing schools to ensure adequate pre-service training for eating disorders diagnosis and treatment. They undermine efforts to ensure legislation for eating disorders fu</span><span class="s3">nding and treatment services. </span><span class="s3">And they are not meeting our needs. </span></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s3">We do not deny that there are sociocultural and psychological components of the illness.</span><span class="s3"> </span><span class="s3">However,</span><span class="s3"> </span><span class="s3">factors being promoted in</span><span class="s3"> th</span><span class="s3">e current Butterfly Foundation </span><span class="s3">awareness campaign</span><span class="s3"> </span><span class="s3">give the impression that body image issues are the</span><span class="s3"> cause of eating disorders rather than a symptom of the disorder.</span></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s3">Additionally, these body image campaigns make a false promise that eating disorders are preventable. From a research and statistics standpoint, first-degree prevention efforts (preventing someone in the general public from acquiring an eating disorder) are </span><span class="s3">not </span><span class="s3">feasible</span><span class="s3"> (Cuiipers P, 2003</span><span class="s3">). Indeed some school-</span><span class="s3">based ‘healthy eating’ initiatives have had deleterious effects (Pinhas, et al, 2013</span><span class="s3">; Carter et al, 1997</span><span class="s3">)</span><span class="s3">. To date there have been no studies to prove </span><span class="s3">primary </span><span class="s3">prevention </span><span class="s3">for eating disorders </span><span class="s3">is effective or even possible as was recently affirmed in the </span></span><a href="http://www.nedc.com.au/e-bulletin-number-twenty-eight" tabindex="-1" target="_parent"><span class="s7" style="font-family: inherit; text-decoration: underline;">National Eating Disorders Collaboration Bulletin E-Bulletin #28</span></a><span style="font-family: inherit;"><span class="s3">3</span><span class="s3">.</span><span class="s3"> (NEDA, </span><span class="s3">2014).</span></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s3">According to a recent analysis Bailey, et al note </span><span class="s3">“Research shows that current programs generally result in an increased knowledge and awareness of public presentations of beauty, body image and eating disorders, but do not necessarily effectively decrease risk factors or change personal attitudes or eating pathology Prevention and intervention strategies continue undergo further development, research and evaluation to effectively motivate behavioural and attitudinal change in young people.”</span><span class="s3"> </span><span class="s3">(Bailey et al,</span><span class="s3"> </span><span class="s3">2014).</span></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span class="s3"><br /></span><span style="font-family: inherit;"><span class="s3">We are concerned that the “DIS” campaign perpetuates a myth that if you and your family do </span><span class="s3">NOT buy into a “thin” or “looks-</span><span class="s3">based” culture then you are safe from </span><span class="s3">developing an eating disorder. </span><span class="s3">That’s simply not true. People don’t care about funding what will never affect them. </span><span class="s3">We are </span><span class="s3">gravely </span><span class="s3">concerned that p</span><span class="s3">erpetuating societal misunderstanding that eating disorders are about body image problems </span><span class="s3">will has</span><span class="s3">negative impact on treatment and research funding. </span></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s3">As you stated </span><span class="s3">in</span><span class="s3"> your email, eating disorders are grossly underfunded and access to treatment is problematic, all the while creating</span><span class="s3"> a huge economic burden. </span><span class="s3">We vehemently agree and would love to partner with you to change that. </span></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span class="s3"><br /></span><span style="font-family: inherit;"><span class="s3">We are happy to consult with you and play a role in helping to develop your strategy and future </span><span class="s3">efforts. </span><span class="s3">We have many Australian members who would </span><span class="s3">be pleased to </span><span class="s3">engage with you to bring the movement forward </span><span class="s3">to </span><span class="s3">facilitate much-needed progress in </span><span class="s3">education and treatment </span><span class="s3">services to the many </span><span class="s3">affected and would like for you to consider an advisory committee that can provide feedback and influence the content of future awareness and fundraising campaigns.</span></span></span></div>
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<span class="s3" style="background-color: rgba(255, 255, 255, 0); font-family: inherit;">Best regards,</span></div>
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<a href="http://iedaction.weebly.com/" style="background-color: rgba(255, 255, 255, 0);" tabindex="-1" target="_parent"><span style="color: black;"><span style="font-family: inherit;"><span class="s4" style="text-decoration: underline;">International Eating Disorder </span><span class="s4" style="text-decoration: underline;">Action</span></span></span></a></div>
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<a href="file:///C:/Users/JOuellette/Downloads/eatingdisorderparentsupport.weebly.com" tabindex="-1" target="_parent"><span class="s4" style="background-color: rgba(255, 255, 255, 0); text-decoration: underline;"><span style="color: black; font-family: inherit;">Eating Disorder Parent Support</span></span></a></div>
<div style="margin-bottom: 0px; margin-top: 0px;">
<a href="https://www.facebook.com/groups/AussieSGPED/" tabindex="-1" target="_parent"><span class="s4" style="background-color: rgba(255, 255, 255, 0); text-decoration: underline;"><span style="color: black; font-family: inherit;">Aussie Support Group for Parents of Children with an Eating Disorder</span></span></a></div>
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<a href="https://www.facebook.com/Dirtylaundryproject?fref=ts" tabindex="-1" target="_parent"><span class="s4" style="background-color: rgba(255, 255, 255, 0); text-decoration: underline;"><span style="color: black; font-family: inherit;">The Dirty Laundry Project</span></span></a></div>
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<a href="https://www.facebook.com/spreadingawarenesswhereitsneeded?fref=ts" tabindex="-1" target="_parent"><span class="s4" style="background-color: rgba(255, 255, 255, 0); text-decoration: underline;"><span style="color: black; font-family: inherit;">Beating Eating Disorders</span></span></a></div>
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<span style="font-family: inherit;">Adults Supporting Peers n Recovery from Eating Disorders (ASPIRE)</span></div>
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<span class="s3" style="background-color: rgba(255, 255, 255, 0);"><br /><span style="font-family: inherit;"></span></span></div>
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<span class="s3" style="background-color: rgba(255, 255, 255, 0); font-family: inherit;">References</span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s8">Bailey AP, Parker AG, </span><span class="s8">Colautti</span><span class="s8"> LA, Hart LM, Liu P, </span><span class="s8">Hetrick</span><span class="s8"> SE. Mapping the evidence for the prevention and treatment of eating disorders in young people. </span><span class="s8">Journal of eating disorders.</span><span class="s8"> 2014</span><span class="s8">;2:5</span><span class="s8">. </span></span></span></div>
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</div>
<div class="s2" style="margin-bottom: 0px; margin-top: 0px;">
<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s9">Bulik</span><span class="s9">, C. International Conference on Eating Disorders, Academy for Eating Disorders, Plenary Presentation, Boston, Mass. 2015.</span></span></span></div>
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</div>
<div class="s2" style="margin-bottom: 0px; margin-top: 0px;">
<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s9">Cuijpers</span><span class="s9"> P. Examining the Effects of Prevention Programs on the Incidence of New Cases of Mental Disorders: The Lack of Statistical Power. </span><span class="s9">American Journal of Psychiatry.</span><span class="s9">2003; 160 (8): 1385-1391.</span></span></span></div>
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<span style="background-color: rgba(255, 255, 255, 0);"><span class="s3"><br /></span><a href="http://www.nedc.com.au/e-bulletin-number-twenty-eight" tabindex="-1" target="_parent"><span class="s10" style="font-family: inherit; text-decoration: underline;">National Eating Disorders Collaboration Bulletin E-Bulletin #28</span></a><span style="font-family: inherit;"><span class="s3">3</span><span class="s3">.</span><span class="s3"> </span></span><a href="http://www.nedc.com.au/e-bulletin-number-twenty-eight" tabindex="-1" target="_parent"><span class="s4" style="font-family: inherit; text-decoration: underline;">http://www.nedc.com.au/e-bulletin-number-twenty-eight#article-one</span></a><span class="s3" style="font-family: inherit;">, 2014.</span></span></div>
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</div>
<div class="s2" style="margin-bottom: 0px; margin-top: 0px;">
<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s9">Pinhas</span><span class="s9"> L, </span><span class="s9">McVet</span><span class="s9"> G, Walker K, </span><span class="s9">Katzman</span><span class="s9"> D, Collier S. Trading health for a healthy weight: The unchartered side of healthy weights initiatives. Eating Disorders. 2013; 21 (2): 109-116.</span><span class="s2"></span></span></span></div>
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</div>
<div class="s2" style="margin-bottom: 0px; margin-top: 0px;">
<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s2">Press Release: AED Releases Nine Truths About Eating Disorders. </span><span class="s2">(</span><span class="s2">n.d.</span><span class="s2">).</span><span class="s2"> Retrieved June 8, 2015, from </span></span><a href="http://www.aedweb.org/web/index.php/25-press-releases/163-press-release-aed-releases-nine-truths-about-eating-disorders?quot" tabindex="-1" target="_parent"><span class="s11" style="font-family: inherit; text-decoration: underline;">http://www.aedweb.org/web/index.php/25-press-releases/163-press-release-aed-releases-nine-truths-about-eating-disorders?quot</span></a><span class="s2" style="font-family: inherit;">;=</span></span></div>
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</div>
<div class="s2" style="margin-bottom: 0px; margin-top: 0px;">
<span style="background-color: rgba(255, 255, 255, 0);"><span style="font-family: inherit;"><span class="s12">Carter, J. C., Stewart, D. A., Dunn, V. J. and Fairburn, C. G. (1997), Primary prevention of eating disorders: Might it do more harm than good?. Int. J. Eat. </span><span class="s12">Disord</span><span class="s12">.,</span><span class="s12"> 22: 167–172. </span><span class="s12">doi</span><span class="s12">: 10.1002/(SICI)1098-108X(199709)22:2<167::AID-EAT8><a href="http://3.0.co/" tabindex="-1" target="_parent">3.0.CO</a>;2D. </span><span class="s2"><a href="http://onlinelibrary.wiley.com/doi/10.1002" tabindex="-1" target="_parent">http://onlinelibrary.wiley.com/doi/10.1002</a></span><span class="s2">/(</span><span class="s2">SICI)1098-108X(199709)22:2%3C167::AID-EAT8%<a href="http://3e3.0.co/" tabindex="-1" target="_parent">3E3.0.CO</a>;2-D/abstract</span></span></span></div>
Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com2tag:blogger.com,1999:blog-7728923136858799485.post-17298497330052359022015-06-02T21:56:00.001-07:002015-12-04T12:10:36.312-08:00#TruthInAdvocacy: A REAL awareness campaign <br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLLqusKGTkvqFjsb3iw-sYoZSnne-EXEyE1fW8geMltaiLs8DJNXABO8HR7UG8NtDhb-9A8Nq3P0GIf-vPM6me0YNKcjh11gjhm3w4g2yLZ5XezmyHgU54_AUvowbXm6mh_oNTeWWRQpZg/s1600/Tabitha_DIS.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="266" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjLLqusKGTkvqFjsb3iw-sYoZSnne-EXEyE1fW8geMltaiLs8DJNXABO8HR7UG8NtDhb-9A8Nq3P0GIf-vPM6me0YNKcjh11gjhm3w4g2yLZ5XezmyHgU54_AUvowbXm6mh_oNTeWWRQpZg/s400/Tabitha_DIS.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b style="color: #333333; font-family: Merriweather, Georgia, 'Times New Roman', Times, serif; font-size: 14px; line-height: 22px; text-align: start;">Please join us in tweeting your "dis" photos to Butterfly at <a href="https://twitter.com/Bfoundation">@bfoundation</a> and to Helen Razer at <a href="https://twitter.com/helenrazer">@HelenRazer</a>. Our hashtag for this is #TruthInAdvocacy & #DISnoBODY (Butterfly's hashtag for their campaign).</b></td></tr>
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<div style="text-align: center;">
#TruthInAdvocacy: A REAL awareness campaign </div>
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If you felt the earth shake beneath your feet recently, it may have been the sound of countless people standing to applaud <a href="http://www.crikey.com.au/2015/05/07/were-making-ourselves-sick-with-the-publicity-of-eating-disorders/?utm_content=buffer1d8a0&utm_medium=social&utm_source=facebook.com&utm_campaign=buffer">this piece</a> by Australian writer and presenter Helen Razer. She articulated beautifully the dialogue that takes place on a daily basis in the eating disorder community--and one far too many eating disorder advocacy groups are unwilling to actively listen to.<br />
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Referencing The Butterfly Foundation, Australia's leading ED advocacy organization, and their recent awareness/fundraising campaign, titled "Don't DIS My Appearance," and billed as "A cheeky campaign for a serious cause" it invited celebrities and others to paint their middle finger and donate money via purchasing a certain brand of nail polish or making donations, Razer had this to say:<br />
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<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif; font-size: 14px; line-height: 22px;"><i>It’s a high-profile, celebrity-studded effort that posits EDs as normal and as prevalent enough to ask us all to change our behaviour in order to prevent them.</i></span><br />
<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif; font-size: 14px; line-height: 22px;"><i><br /></i></span>
<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;">To which our community of parents, those affected and clinicians and other advocates says, loudly and in unison:</span></span><br />
<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;"><br /></span></span>
<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;">YES, THAT'S IT! THAT'S WHAT WE'VE BEEN TRYING TO TELL YOU BUTTERFLY (AND MANY OTHER ORGS)! PLEASE LISTEN TO US!</span></span><br />
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<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;">More wisdom from Ms. Razer:</span></span><br />
<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;"><br /></span></span>
<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif; font-size: 14px; line-height: 22px;"><i>Depression, despite its lack of biomarkers and clear prevalence among those poor in social capital, is read as biological. Anorexia, despite great evidence of its biological basis, is read as social. And The Butterfly Foundation certainly overplays this by <b>recommending being nice to people as a cure for death.</b></i></span><br />
<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif; font-size: 14px; line-height: 22px;"><i><br /></i></span>
<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;">Many of us have reached out to Butterfly on numerous occasions with the following messages:</span></span><br />
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<li><span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;">Awareness campaigns like this provide a false and destructive "awareness"--that if a person has no body image issues he/she has no risk of an eating disorder and that eating disorders are preventable (there is as yet no conclusive evidence to support this assertion).</span></span></li>
<li><span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;">Awareness campaigns like yours reinforce a societal perception that eating disorders are about choice and vanity.</span></span></li>
<li><span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;">Awareness campaigns like yours impact research funding by diverting money from important research on the genetic and biological underpinnings of eating disorders to one very small portion of <i>possible </i>environmental cause (negative body image).</span></span></li>
<li><span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;">Awareness/fundraising campaigns like yours make society assume "something" is being done about eating disorders when the truth is that worldwide, and certainly in Australia, nowhere near enough is being done to provide physician training on identifying eating disorders and access to treatment. </span></span></li>
<li><span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;"><a href="https://gallery.mailchimp.com/88d903594a3d572ceab62bd7c/files/9_truths_about_EDs_01.pdf">Awareness that anorexia is THE deadliest mental illness there is and that other eating disorders also carry serious medical and psychiatric complications.</a></span></span></li>
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<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;">What we hear back from Butterfly regarding these concerns is most often nothing and sometimes a dismissive "canned" response about how they understand eating disorders are biological and genetic, but we can't discount environmental influences. Too which we parents and patients say, TRUE! We are highly concerned about the environmental influence of rigid, school-based nutrition programs which place a heavy emphasis on good and bad foods and have been show to have the "<a href="http://www.ncbi.nlm.nih.gov/pubmed/23421694">unintended negative consequence"</a> of triggering eating disorders in those genetically vulnerable. </span></span></div>
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<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;"><br /></span></span></div>
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<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;">Sadly, we never get an awareness campaign based on anything but the erroneous ideas that eating disorders are caused by bullying and Photoshop. </span></span></div>
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<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;"><br /></span></span></div>
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<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;">This time, we have decided we are speaking out about being "dissed" by Butterfly's ignoring the input of the very stakeholders they purport to speak for - those affected by eating disorders and their families. </span></span></div>
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<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;"><br /></span></span></div>
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<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;">We are real people with real opinions based on real research . . . and we are demanding REAL awareness: anything less is definitely a "dis."</span></span></div>
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<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;"><br /></span></span></div>
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<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="line-height: 22px;"><b><span style="font-size: 14px;">Please join us in tweeting your "dis" photos to Butterfly at </span><a href="https://twitter.com/Bfoundation" style="font-size: 14px;">@bfoundation</a><span style="font-size: 14px;"> and to Helen Razer at </span><a href="https://twitter.com/helenrazer" style="font-size: 14px;">@HelenRazer</a><span style="font-size: 14px;">. Our hashtag for this is #TruthInAdvocacy & #DISnoBODY</span></b></span></span></div>
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<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;"><b><br /></b></span></span></div>
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<span style="color: #333333; font-family: "merriweather" , "georgia" , "times new roman" , "times" , serif;"><span style="font-size: 14px; line-height: 22px;">We are proud to partner with <a href="http://eatingdisorderparentsupport.weebly.com/">Eating Disorder Parent Support</a>, <a href="https://www.facebook.com/Dirtylaundryproject?fref=ts">The Dirty Laundry Project</a>, <a href="http://aspire-network.blogspot.com.au/">ASPIRE </a>and <a href="http://edbites.com/">ED Bites </a>- please raise your voice with us and ask for a halt to "cheeky" campaigns that hurt rather than help. </span></span></div>
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Jennifer Denise Ouellettehttp://www.blogger.com/profile/07278301590843811018noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-36595328777841088892015-05-31T15:44:00.003-07:002015-12-04T11:38:58.331-08:00International Conference on Eating Disorders Recap<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBs_VoGZVkhkBD11gpmbpblVIDDep9DLIArzOWe9SwZYhoLKBTMgd9gKfnqUP8tnX_oZgxs0mahehfrx8JCJshzuf-9MLUJydYgCxcXaYrzydKe4jiDjAEtI0BDBwHa47okaAYkrhX6upm/s1600/Boston+Reflection+.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="400" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgBs_VoGZVkhkBD11gpmbpblVIDDep9DLIArzOWe9SwZYhoLKBTMgd9gKfnqUP8tnX_oZgxs0mahehfrx8JCJshzuf-9MLUJydYgCxcXaYrzydKe4jiDjAEtI0BDBwHa47okaAYkrhX6upm/s400/Boston+Reflection+.jpg" width="358" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Juxtaposition of the old and the new in Boston on the last day of the conference; it seems a fitting visual for this post!</td></tr>
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International Conference on Eating Disorders: Recap (Really Late Recap, Sorry!)<br />
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<o:p><i>Note: This was written some time ago and put on the back burner until everyone present had a chance to review it--JD Ouellette</i></o:p></div>
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I feel terrible for having waited this long to recap the
International Conference of Eating Disorders (ICED) put on by the <a href="http://www.aedweb.org/web/index.php">Academy for Eating Disorders (AED)</a> for all our members, but boy howdy
was I beyond exhausted. Plus I walked into a work situation that itself
required lots of energy expended. Basically, I was a hot mess for 11 days <span style="mso-spacerun: yes;"> </span>after getting home and am really just now back
in the swing of things. Amy traveled from Dar Es Salam and also tacked on a
visit to her most adorable baby granddaughter and then headed back into the
thick of her work and home life.<o:p></o:p></div>
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEierJMijSlKM8EJ60WAeZkhT6g3O-D8m0axCKRJOev1xHcszUDTFP3fNV6xP9kBuVqnjQ2eM7wZbKGSlyezGsJsE1gphC5k9mR5Vq-lSqeN7dcWSKNUrFdxbA-IJY0nlgL7DjXEnykyUSsH/s1600/ICED+People.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="132" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEierJMijSlKM8EJ60WAeZkhT6g3O-D8m0axCKRJOev1xHcszUDTFP3fNV6xP9kBuVqnjQ2eM7wZbKGSlyezGsJsE1gphC5k9mR5Vq-lSqeN7dcWSKNUrFdxbA-IJY0nlgL7DjXEnykyUSsH/s400/ICED+People.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">L-R 1st photo Joan Reiderer, Amy Cunningham, Lisa LaBorde; 2nd photo the FEAST contingent with representation from Australia, New Zealand, Canada and the U.S.A and featuring the incomparable Laura Collins; 3rd photo, Alice Springs, Celia Robicheau, Alyson Earnest, JD Ouellette, Alec Rodney </td></tr>
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As bonding experiences, conferences are amazing. Amy and I
had never met “IRL” so that in itself was a treat.<span style="mso-spacerun: yes;"> </span>Alec Rodney and Alyson Earnest were there and
at various points Celia Robicheau, Alice Springs, and Lisa Epstein were there along
with many people from FEAST and parents there independently. We got to go full
fangirl on the amazing mom who wrote the first AED Guide to Medical Management
of Eating Disorders at dinner one night. As a collective, <a href="http://iedaction.weebly.com/">IEDAction</a>, <a href="http://eatingdisorderparentsupport.weebly.com/">EatingDisorder Parent Support</a>, <a href="https://www.facebook.com/Dirtylaundryproject?fref=ts">The Dirty Laundry Project</a> and <a href="http://www.feast-ed.org/">F.E.A.S.T</a>. consistently share similar goals and a vision for progress. <o:p></o:p></div>
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We want physician education and access to evidence-based
treatment prioritized as number one. We feel any treatment predicated on or
commonly including blaming family dynamics is in opposition to current
evidence. We want researchers and clinicians to listen to parents about what we
have seen and observed as this is important information to improve treatment
outcomes.<o:p></o:p></div>
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For IED specifically, a major reason for investing
considerable time and money (Tanzania to Boston for Amy!) in getting to this
conference was to show people firsthand who we are and what we are about. <o:p></o:p></div>
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Who we are is a collective of smart, educated parents,
clinicians and those affected who have something new to offer this advocacy world.
We have fresh energy and fresh ideas plus experiences from other advocacy
arenas. We evaluate the status quo with an outsider’s eye while we honor those
in this movement on whose shoulders we stand.<o:p></o:p></div>
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What we are about is working on several fronts to change
societal perception of eating disorders along with promoting meaningful changes
in how and when eating disorders are diagnosed and treated. We are about
working collaboratively with other groups as we have done with the National Initiative for Eating Disorders (<a href="http://nied.ca/">NIED</a>) in Canada.<br />
<br />
We are
about providing a space for dialogue and education and looking for any
opportunity to have conversations about eating disorders that open minds. We
are also, and importantly, about transparency in terms of financial
relationships/connections and allowing people to evaluate for themselves versus
trusting others to make decisions for the field without engaging all
stakeholders.*<o:p></o:p></div>
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We were very well received in general. We had incredible and
productive conversations with amazing people, both as individuals and in
groups. We forged relationships on which to build further cooperation in
advancing our common agenda. <o:p></o:p></div>
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Beginning on a High
Note<o:p></o:p></div>
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IED had been invited to attend a leadership meeting on the
Tuesday before the conference. I had already purchased my ticket, but Amy was
able to make it and thank goodness she did. Her contributions were important
and the committee decided to officially accept Cindy Bulik’s 9 Myths (though
they will be restated as truths) as the position of the AED. This is very
important.<o:p></o:p><br />
<br />
<i><a href="http://www.aedweb.org/web/index.php/25-press-releases/163-press-release-aed-releases-nine-truths-about-eating-disorders?quot;=">This happened after I wrote this post</a>! </i><br />
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Thursday was the official conference beginning and Cindy
Bulik shared exciting updates from what they are beginning to learn from the
ANGI study. There is some indication the same genes (SNPs?) may mutate one way to cause schizophrenia and another to cause anorexia. Fascinating stuff! <o:p></o:p></div>
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Alec was praised by a fellow conference attendee for
his succinct but powerful statement made at the end of the plenary presentation
on<span style="mso-spacerun: yes;"> </span>“Dissemination and Development of
Psychological Treatments in Eating Disorders: Evidence-Based or How to Sell Snake
Oil?” The presentation was predicated, humorously and effectively, on Donald Rumsfield’s “Known Knowns” and “Unknown Knowns” and “Unknown Unknowns. “ Alec
asked if wasn’t time AED make it a known known that excluding parents should be
the exception across all treatment modalities. The answer from incoming AED
president Dr. Becker was equivocal, but the audience applause was unequivocal
support from many.<o:p></o:p><br />
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5GUilJyfYBqJjegMAlRSItnsFBSSD25ZCWZoEM51OoOwF1GbJfyDUu4Uqiv6t1FomJh482TjlZHJ_6jX3n-cnYrweOXX7Sj_40ysPLK_tAl5vk__BqwJFpwXxFWTpPlIgTKN85t8aeMRT/s1600/Screen+Shot+2015-05-31+at+2.57.42+PM.png" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="196" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg5GUilJyfYBqJjegMAlRSItnsFBSSD25ZCWZoEM51OoOwF1GbJfyDUu4Uqiv6t1FomJh482TjlZHJ_6jX3n-cnYrweOXX7Sj_40ysPLK_tAl5vk__BqwJFpwXxFWTpPlIgTKN85t8aeMRT/s400/Screen+Shot+2015-05-31+at+2.57.42+PM.png" width="400" /></a></div>
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To be honest, the rest of Thursday, Friday and most of
Saturday was a blur of fascinating sessions and sitting out sessions to hang
with very cool people and relationship build and soak up institutional
knowledge and coffees and lunches and dinners and drinks and very late nights.<o:p></o:p></div>
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Our core group (Alec, Alyson, Amy and I) divided and
conquered on attending sessions and came together regularly at breaks to share
and strategize. We hung out with (only) FEAST people quite a bit and were at the FEAST
luncheon when Mary Beth Krohel received the FEAST Magic Plate award (it’s a
lovely engraved silver plate) for her work (as mentioned above she is the
brains and passion behind the AED Medical Guides). A highlight of the trip for
me was her ceremonial passing of the baton to us newcomers as we ate lunch. We
were lucky to be at dinner when the inspirational June Alexander plated food
straight off a Mongolian grill at Fire and Ice.<o:p></o:p><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJHu9u9H4eNXfxQmisJJSiIpo7BCmEHYtfSIeTIbP3T72BvE4rVLyScsY_4oImIna0AymSbe_GtiIQurk5_Hd6qrdNT8dLxVJNuGRuI9K3tkM6yrECkvSRHHJwAUhiJbEbY3l42Wxa456e/s1600/Screen+Shot+2015-05-31+at+3.42.17+PM.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="282" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEiJHu9u9H4eNXfxQmisJJSiIpo7BCmEHYtfSIeTIbP3T72BvE4rVLyScsY_4oImIna0AymSbe_GtiIQurk5_Hd6qrdNT8dLxVJNuGRuI9K3tkM6yrECkvSRHHJwAUhiJbEbY3l42Wxa456e/s400/Screen+Shot+2015-05-31+at+3.42.17+PM.png" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">At the FEAST Booth--ground zero for family empowerment </td></tr>
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While everything we learned was helpful, one of the most
important presentations was the panel on having difficult discussions—Dr.
Carolyn Becker, a leading prevention researcher and Laura Collins, founder of
FEAST, were among those sharing how to have difficult conversations—about
building bridges. This was a self-selected group of people who care about
listening and evolving and was definitely Alsyon’s highlight experience; the
atmosphere was virtually electric with hope. Another much-talked-about session
was on exercise and Alec took lots of notes there. <o:p></o:p><br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-INjEMRZd4OAq5TMvURZMGy6GGf_aPp3IpwQ8Ypgd_s0hiaAxk2y3jd324H5kQYhWMOfm-Uj8Ys2OZ_IMQq74h_HJT_8ntzjW8GAQRUISdthISIMxiwkeHyBYOJKpxuGDt8L1YRAuFbl-/s1600/11145190_964117116971654_5442495698279609578_n.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="300" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg-INjEMRZd4OAq5TMvURZMGy6GGf_aPp3IpwQ8Ypgd_s0hiaAxk2y3jd324H5kQYhWMOfm-Uj8Ys2OZ_IMQq74h_HJT_8ntzjW8GAQRUISdthISIMxiwkeHyBYOJKpxuGDt8L1YRAuFbl-/s400/11145190_964117116971654_5442495698279609578_n.jpg" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">Amy, Alyson, Dr. Hill</td></tr>
</tbody></table>
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Formal and informal meetings of note were held with <a href="http://tedxcolumbus.com/speakers-performers/2012-the-future-revealed-speakers-performers/laura-hill-phd/">Dr. Laura Hill</a>
(Alyson, Amy, Alec) with <a href="http://www.gfed.org/">GFED</a> (Alec, JD) and with <a href="http://laurassoapbox.net/">Laura Collins</a> (Alyson, Alec and Amy). A huge disappointment was the last-minute cancellation by Katrina and Kathleen
from the <a href="http://www.eatingdisorderscoalition.org/">Eating Disorder Coalition </a>of a meeting Katrina had made with Amy at the Tuesday Leadership
Conference. <o:p></o:p></div>
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We are all very interested in legislative change and would
love to work with the EDC and we also need to be fully apprised of the content
of what is being lobbied for before committing considerable time and money both to
get to D.C. and to work locally with our representatives.** Putting our stamp of
approval, both as individuals and organizations, on anything sight unseen won’t
happen and for the EDC to respond to our queries with “trust us” has us
concerned and puzzled. <o:p></o:p></div>
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We made sure to check out the exhibitors and Amy made some
very important connections with people from The Joint Commission and IAEDP—we
will update on those when some things firm up. Amy’s wide knowledge base in
Public Health and Legislative Advocacy, gleaned through HIV/AIDS work, is a true
gift to the movement. <o:p></o:p></div>
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Late Saturday afternoon, the final session, a Think Tank
presentation by <a href="https://people.healthsciences.ucla.edu/institution/personnel?personnel_id=9478">Dr. Michael Strober</a> of UCLA along with a panel of clinicians
came around; having heard Dr. Strober is now known for his progressive views on
eating disorder treatment we were all anxious to watch and listen. <o:p></o:p></div>
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The format of the presentation was a case study with various
clinicians weighing in on the case Strober presented—a 16-yr old who had been
six months in the hospital with no weight gain, came from chaotic family, mom
was an alcoholic and grandfather with whom the patient was close recently
deceased—and then him sharing what he actually did with this patient. <span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
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When it came time for Dr. Strober to share his resolution he
began with sharing this slide: “Some assertions about AN, deemed factual.” I
took issue with both the tone of “deemed” and the way the bullet points are
framed to make the assertions seem ludicrous. <o:p></o:p><br />
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<i style="mso-bidi-font-style: normal;">1. It ‘s a genetic
disorder, the environment matters little—the idea that legacies should matter
in clinical care, that information –knowledge of a patient’s history—should be
sought in an effort to understand how a young life became so disordered is an
anachronism.<o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I have never heard a single person assert such a thing as
the above. UCSD, a program that is agnostic as to cause, asked us for a
detailed history of her life. They did this not because they presumed something
wrong in her background—it’s prudent medical and psychological care to ask
these questions. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
As to “understanding how a young life became so disordered,”
it happened in our house when anorexia developed. This was not a chicken-egg
situation for us or many others I know—the disordered life was a result of the
eating disorder.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">2. What patients
espouse lacks authenticity; it is a starvation induced screaming madness; it
should be dismissed; it resolves with refeeding. <o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Again—huge leap from “understand that the malnourished brain
can’t think clearly and anorexia often presents as a psychosis replete with
voices/thoughts and the inability to understand one is ill” to “dismiss the
patient’s voice.” <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">3. Psychotherapy must
await weight restoration; refeeding is an essential predicate for
psychotherapy. <o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Very broad and not what I’ve seen in practice at all.
Prioritizing refeeding, weight gain and full, ongoing nutrition yes. Forget any
therapy until w/r? That I have not seen as common.<span style="mso-spacerun: yes;"> </span>From personal experience my daughter didn’t
get much out of any therapies until she was well on her way to w/r, but she
still was physically present for sessions—meaning she mentally present for the psychotherapy at the earliest point at which it
began to have value.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<i style="mso-bidi-font-style: normal;">4. There is a gold
standard treatment for our young patients.<o:p></o:p></i></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Gold standard overstates it a bit (as intended), but yes
there is. Currently FBT produces the best outcomes for adolescents with
anorexia. It doesn’t help everyone, but it does help the greatest number of
people and so should be presented to realistically presented to families as an
option and with that information.<span style="mso-spacerun: yes;"> </span><o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
What did Dr. Strober do with this you patient to get her on
the road to recovery? I can’t remember everything <span style="mso-spacerun: yes;"> </span>(what with the blood whooshing in my ears
after I heard these two statements he made) and his words are paraphrased here:<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoListParagraphCxSpFirst" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->He listened to the patient because <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">all</i>
</b>anorexia derives from a patient having not been heard by those around
him/her. <o:p></o:p></div>
<div class="MsoListParagraphCxSpLast" style="mso-list: l0 level1 lfo1; text-indent: -.25in;">
<!--[if !supportLists]--><span style="font-family: "symbol"; mso-bidi-font-family: Symbol; mso-fareast-font-family: Symbol;"><span style="mso-list: Ignore;">·<span style="font: 7.0pt "Times New Roman";">
</span></span></span><!--[endif]-->He something something because <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">all</i></b><i style="mso-bidi-font-style: normal;"> </i>anorexia is a maladaptive coping
mechanism for the patient. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
My jaw remained on the floor until Laura Collins, at the
mic, spoke in a clipped and measured words something to the effect of “I cannot
believe this. I am upset. Others are upset. People have walked out.” <o:p></o:p><br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFKLIQDWT8ctxEciX6yVVJAhU94oE-_5p2JxJUo4bNgRFGBuJCNJkcXDLosxhpLtfuBr3QZ-Uwrg_4xx_wTnFLN2PZ9K3vX-1sw-jtj8aeNr3_-x466DVmCcrk4DRqnB8AvuyRlqJ17MJ1/s1600/Screen+Shot+2015-05-31+at+3.14.15+PM.png" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="316" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhFKLIQDWT8ctxEciX6yVVJAhU94oE-_5p2JxJUo4bNgRFGBuJCNJkcXDLosxhpLtfuBr3QZ-Uwrg_4xx_wTnFLN2PZ9K3vX-1sw-jtj8aeNr3_-x466DVmCcrk4DRqnB8AvuyRlqJ17MJ1/s320/Screen+Shot+2015-05-31+at+3.14.15+PM.png" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">I have a happy face; this is not it. </td></tr>
</tbody></table>
</div>
<div class="MsoNormal">
Having recovered my faculties, I also took the mic and Dr.
Strober and I engaged in a debate of sorts; one in which I was treated
dismissively and condescendingly (and I believe I was a proxy for parents in
general) and told I misunderstood what he was saying. Being of a thick hide and
a temperament suited to fighting back instead of sitting down, and knowing that
as a parent I am given more latitude to confront a man of his stature and
position, I pushed back. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
I pushed back with my daughter’s story and with other
stories I have heard from all of you. Of patients being forced to cast about
for a plausible underlying cause to please a clinician sure there must be one
in <b style="mso-bidi-font-weight: normal;"><i style="mso-bidi-font-style: normal;">all
</i></b>cases. Of parents asked to admit to a sick child’s version of events
that is heavily ED-filtered and remembered differently by all other parties
present. Of families that did have dysfunction who got the help they needed—not
because they caused their child’s illness, but because they did what it took to
support recovery and save their child’s life.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Of how early intervention and treatment that is agnostic to
cause and empowers parents to keep their children’s brains in a place where
they can do work needed for recovery—and that work varies from person to
person.<span style="mso-spacerun: yes;"> </span>Of how empowered and educated parents
weave safety nets that keep their children in recovery or catch them quickly if
they fall.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The audience reaction was gratifying in the extreme. I was
heard which means WE were heard. It was a special moment for me to have Laura
Collins, who was, not that long ago, the only parent at ICED and who was not
welcomed then nor for some time. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The follow up to our lengthy back and forth (and I have no
illusions that Dr. Strober listened to what I said at all—in fact I would bet
he did not based on demeanor) was the doctor shown behind me who said simply, “I treat patients
with leukemia; I don’t need to know how they got it to treat them.”<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Closing comments were made by local mother Alice Springs who shared the
difficulties, even in a city the size of Boston, with getting a diagnosis and access to high-quality, evidence-based treatment and that it was the
perseverance of herself and her husband with regard to refeeding and continued
full nutrition that shaped her daughter’s initial and continued recovery.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The time after that session ended and before our core group
left the fantastic party for a cheaper place to enjoy a cocktail ($10 for a
glass of wine?!) and a chance to process and bond with each other was truly
amazing.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Several clinicians and others reached out to me and to Alec,
Alyson, Celia and other parents to apologize for the aforementioned
condescension and dismissiveness, a couple apologized for leaving it to a
parent to press their colleague about both the content and delivery of Dr.
Strober. A lovely Physician’s Assistant from Texas stopped me en
route to the restroom and told me what she heard had changed the way she will practice medicine. I had a mutually respectful dialogue with a couple recovered
clinicians and asked them to consider that possibly instead of personal trauma
being viewed as causal, viewing it as a complicating factor could allow for a
synthesis of the biological and psychological. Pondering happened on all sides.</div>
<div class="MsoNormal">
<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
The cherry on top of the sundae of all the positive feedback
for parents was when <a href="http://www.aedweb.org/web/index.php/about-aed/about-forum-2/advisory">Dr. Becker</a> tracked me down during the festivities to
assure me changes were coming and a repeat of our exchange would not happen
again on her watch.<o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
One advantage to waiting to write a recap is the chance to
let some of the energy and magic of the experience settle so one can see what
was really learned and accomplished. The advantage of hindsight tempers only
slightly the positivity with which I reflect back. It feels to me we are
standing on the precipice of real change that will impact and revolutionize the
treatment of eating disorders. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Who are we and what are we about? We are Full Metal Apron
fighters – for our kids, for ourselves, for our patients and for real change
that supports full recovery and less time spent sick. <o:p></o:p></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
To the AED, the group responsible for this incredible
opportunity and for bringing together and honoring the voices of all
stakeholders, we say thank you and<a href="http://www.aedweb.org/ICED2014/Future_ICED.htm"> see you in San Francisco next </a>year!<o:p></o:p><br />
<br />
<br />
<br />
<i>*Relevant citation: <a href="http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4107906/#!po=0.632911">Patient Advocacy Organizations: Institutional Conflicts of Interest, Trust and Trustworthiness</a>. We at IED believe that the duty to fully disclose possible conflicts of interest is not limited to researchers and clinicians, but should apply to all advocates and advocacy organizations as well. </i><br />
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<div class="MsoNormal">
**Shortly after this was written, <a href="http://eatingdisorderscoalition.blogspot.com/2015/05/annaslaw-top-10.html">this press release </a>highlighted what is in the Anna Westin Act and this is the p<a href="https://www.youtube.com/watch?v=0-XWVhCuec">re-lobby briefin</a>g. Thanks so much to the EDC for sharing the video. </div>
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Jennifer Denise Ouellettehttp://www.blogger.com/profile/07278301590843811018noreply@blogger.com1tag:blogger.com,1999:blog-7728923136858799485.post-25880630315303120072015-05-15T20:12:00.001-07:002015-12-04T12:07:38.905-08:00Nine Truths About Eating Disorders<div style="text-align: center;">
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<span style="font-family: "arial" , sans-serif; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="font-family: inherit; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;">International Eating Disorder Action is proud to have worked closely with prominent eating disorder organizations and in collaboration with Dr. Cynthia Bulik, PhD, FAED, to create the “Nine Truths about Eating Disorders.” The major goals of creating this unified message are to raise public awareness, increase understanding, break the stigma, and ultimately to lead to early diagnosis and intervention. </span></span></div>
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<span style="font-family: inherit;">The current “Nine Truths About Eating Disorders” document is based on Dr. Bulik’s 2014 “9 Eating Disorders Myths Busted” talk at the National Institute of Mental Health. You can </span><a href="http://www.nimh.nih.gov/news/science-news/2014/9-eating-disorders-myths-busted.shtml"><span style="font-family: inherit;">click here</span></a><span style="font-family: inherit;"> to watch her speak at the National Institute of Mental Health.</span></div>
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<span style="font-family: "arial" , sans-serif; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="font-family: "arial" , sans-serif; font-size: 12pt; mso-ansi-language: EN-US; mso-bidi-language: AR-SA; mso-fareast-font-family: "Times New Roman"; mso-fareast-language: EN-US;"><span style="font-family: inherit;">To download the PDF of this document </span><a href="http://bit.ly/9-ED-Truths"><span style="color: blue; font-family: inherit;">click here</span></a><span style="font-family: inherit;"> and share!</span></span></span></div>
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<span style="font-family: inherit;">To read more visit the pages and read the press releases from other cosigners: </span></div>
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<a href="http://www.aedweb.org/web/index.php/25-press-releases/163-press-release-aed-releases-nine-truths-about-eating-disorders?quot;="><span style="color: blue; font-family: inherit;">AED</span></a><span style="color: blue; font-family: inherit;">, </span><a href="http://www.feast-ed.org/news/231322/Nine-Truths-about-Eating-Disorders.htm"><span style="color: blue; font-family: inherit;">F.E.A.S.T.</span></a><span style="color: blue; font-family: inherit;"> </span><a href="http://www.nationaleatingdisorders.org/blog/9-truths-about-eating-disorders"><span style="color: blue; font-family: inherit;">NEDA</span></a><span style="color: blue; font-family: inherit;">, </span><a href="http://www.anad.org/news/nine-truths-about-eating-disorders/"><span style="color: blue; font-family: inherit;">ANAD,</span></a><span style="color: blue; font-family: inherit;"> </span><a href="http://www.eatingdisorderscoalition.org/NineTruthsAboutEDs.htm"><span style="color: blue; font-family: inherit;">EDC,</span></a><span style="color: blue; font-family: inherit;"> </span><a href="http://www.medainc.org/"><span style="color: blue; font-family: inherit;">MEDA,</span></a><span style="color: blue; font-family: inherit;"> </span><a href="http://bedaonline.com/9-truths-about-eating-disorders/"><span style="color: blue; font-family: inherit;">BEDA,</span></a><span style="color: blue; font-family: inherit;"> </span><a href="http://residentialeatingdisorders.org/news-updates.htm"><span style="color: blue; font-family: inherit;">REDC</span></a><span style="color: blue; font-family: inherit;">, </span><a href="http://eatingdisorderparentsupport.weebly.com/"><span style="color: blue; font-family: inherit;">EDPS</span></a><span style="color: blue; font-family: inherit;">, </span><a href="http://www.iaedp.com/"><span style="color: blue; font-family: inherit;">IAEDP,</span></a><span style="color: blue; font-family: inherit;"> </span><a href="http://www.theprojectheal.org/"><span style="color: blue; font-family: inherit;">Project Heal,</span></a><span style="color: blue; font-family: inherit;"> </span><a href="http://www.transfolxfightingeds.org/#!blog/cxg6"><span style="color: blue; font-family: inherit;">T-FFED</span></a></div>
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<span style="font-family: inherit;">Also read these articles to learn more:</span></div>
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<a href="http://www.examiner.com/list/nine-truths-about-eating-disorders-what-you-should-know"><span style="color: blue; font-family: inherit;">The Examiner</span></a></div>
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<a href="http://www.newswire.com/press-release/forget-the-myths-announcing-nine-truths-about-eating-disorders"><span style="color: blue; font-family: inherit;">Newswire</span></a></div>
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<a href="http://www.newswise.com/articles/nine-truths-about-eating-disorders"><span style="color: blue; font-family: inherit;">Newswise</span></a></div>
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<a href="http://buzzfeedy.com/nine-truths-about-eating-disorders-what-you-should-know/"><span style="color: blue; font-family: inherit;">Buzfeedy</span></a></div>
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Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-12303594941476686462015-04-26T15:38:00.000-07:002015-12-04T11:37:59.002-08:00Dear ICED: I wish I knew - really knew - that this disease all along wanted only one thing - my son’s life<div style="font-family: Helvetica; margin: 0px;">
<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif;"></span></span><div style="font-family: Helvetica; margin: 0px; text-align: center;">
<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3wg9Qvjis4H740bNBP7DehUi3pCBZ__PN9EIX60mRPEuQAU68vZmb5-p1rRwBEb7x0YeQaRf3J9xvHFuCVX2wut2S4GCoVfGIigIgy5HGGO6EZ4aY0HPIU-cmmJtF8GRiRVYw3FHwP1fU/s1600/globe.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3wg9Qvjis4H740bNBP7DehUi3pCBZ__PN9EIX60mRPEuQAU68vZmb5-p1rRwBEb7x0YeQaRf3J9xvHFuCVX2wut2S4GCoVfGIigIgy5HGGO6EZ4aY0HPIU-cmmJtF8GRiRVYw3FHwP1fU/s1600/globe.jpg" width="320" /></a></span></span></span></span></div>
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<em>Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!</em></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><em><strong>Dear ICED: I wish I knew - really knew - that this disease all along wanted only one thing - my son’s life</strong></em></span></span></div>
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<span style="letter-spacing: 0px;"><em><span style="font-family: "arial"; font-size: x-small;">Pam Dillard</span></em></span></div>
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<span style="letter-spacing: 0px;"><em><span style="font-family: "arial"; font-size: x-small;">LaJolla, California, USA</span></em></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><em><strong>As I look back on our experience and ask “what would I like to have seen play out differently", it would be the following:</strong></em></span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><em>1. I wish we didn’t have to go through that shock and awe of struggling with what it means that our son had an eating disorder. When I was reading about the disease initially, pretty much everything I could get my hands on was related to girls and women. The ED looked so different on our son. He did not throw any tantrums, he didn’t have melt downs at dinner, there was no food flying in the kitchen. There was only quiet compliance on the surface while the lies worked craftily to allow his ED to completely take control of him. </em></span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><em>2. I wish I understood immediately how VITAL the right treatment team is for recovery. </em></span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><em>3. I wish I understood how helpful medications could be to quiet his anxiety.</em></span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><em>4. I wish teachers and nurses had more of a working knowledge about EDs. </em></span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><em>5. I wish we didn’t have the constant stress of “will my insurance company” allow another “X” amount of time in treatment? I was appalled at one point when we were denied coverage for IOP therapy. At that point in time, we had incurred approximately hundreds of thousands of medical bills for medical treatment. I was astonished our insurance company could be so short sited about ongoing IOP and further the Medical Director doing the review had no experience with EDs. </em></span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><em>6. Most importantly, I wish I knew - really knew - that this disease all along wanted only one thing - my son’s life. Once we understood this, that knowledge truly helped me and my husband sort through the lies and see how severely and savagely this disease attacked our son.</em></span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">April 10, 2015</span></span></div>
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<span style="font-family: "arial";"><span style="font-size: x-small;"><span style="letter-spacing: 0px;">Today marks one year since our son was discharged from the Eating Recovery Center in CO. He has shown so much progress since that day; maintaining a healthy weight, making friends, adjusting to a new school, and has become genuinely a happy kid! Our lives for the three years prior were filled with chaos, heartbreak, pain, anguish and doubt. It included doubt that our “new normal” would ever look like anything outside of helping our son survive. Doubt that the poor decisions made in the process of trying to help him wouldn’t be erased. Doubt that he would ever make it. </span></span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">Our son was diagnosed with an eating disorder when he was 13. We had noticed some differences in him in the months prior - extreme rigidity about food, wearing multiple layers of clothing, isolating, negative attitude about sports. We were fortunate that his pediatrician saw the symptoms and immediately referred him to the UCSD Eating Disorders Treatment Center in La Jolla. It was there that we found he had an eating disorder, and also was so depleted he had to be admitted to the hospital His resting heart rate was in the 20s. We were shocked.</span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">We had never heard of anorexia affecting men or boys, or that people are genetically predisposed to it. We also realized during our first hospitalization that not only did I have an aunt who suffered from the disease, but also a male cousin. And the questions about our parenting and whether we could have caught this sooner loomed. Of course, we could have caught it sooner, we saw the signs, but we didn’t nonetheless.</span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">That was the first of five hospitalizations over the course of 2 1/2 years. It was during his last hospitalization that we were <b>instructed</b> to have him admitted to a residential facility. In fact, we were not permitted to even take him home. Our son’s ED had shown so much determination, and manifested itself in so many ways, that the family based treatment we’d been embracing was no longer enough. My husband and I are forever grateful for that push. </span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">I’m convinced that even though our journey has been painful, exhausting, and frustrating, we are fortunate on so many levels. We have the luxury of living within driving distance of a world class eating disorders treatment facility (UCSD); we have a Children’s hospital (Rady Children’s Hospital) with an entire wing dedicated to treating young people with this disease. We have therapists who have experience with eating disorders, Family based treatment, DBT, and we had people around us who wanted to see our son live. </span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">Even though those professionals were able to help us help our son, society still does not recognize freely that this insidious disease affects men and boys. Some of the feedback we heard from people around us included:</span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;"><strong>“What do you mean, you have an eating disorder? That’s a girl disease!” “Are you gay?”</strong></span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">It wasn’t insulting enough that our son was labelled “anorexic”, but somehow his disease drew an immediate conclusion regarding his sexuality! Our society doesn’t have the experience or knowledge that eating disorders are agnostic regarding the gender of its victims! It was nonetheless heartbreaking. And it catapulted us into a period of extreme privacy because of the shame we drew from those reactions. </span></span></div>
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<span style="letter-spacing: 0px;"><span style="font-family: "arial" , "helvetica" , sans-serif; font-size: x-small;">There is no shame! We need to be able to speak about this, educate people, understand the struggles of a male with an ED may look different, but they are just as severe and potentially fatal.</span></span></div>
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<span style="font-family: AvenirNext-Regular;"><span style="font-size: x-small;"><em>The author is Pamela Dillard, La Jolla, CA US, Mom and a Sales Director at an insurance company</em></span></span><br />
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Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-91119669168525331082015-04-25T18:30:00.002-07:002015-12-04T11:38:39.796-08:00Dear ICED: My daughter just disappeared into herself<br />
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<em>Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!</em></div>
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<strong>Dear ICED: My daughter just disappeared into herself</strong><br />
<strong>By: Kim</strong><br />
<strong>NSW, Australia</strong><br />
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My daughter started down the path to anorexia nervosa sometime mid-late 2009. I can say that now with hindsight and being able to recognize the symptoms. Compulsive, obsessive, perfectionism, almost hysterical outbreaks if something didn’t suit her, no desserts. Something building but not showing itself in any real external way. You could have labelled it teenager behavior, highly strung or overly sensitive. She was 14, turning 15 in December of 2009, she is now 20.<br />
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At the beginning of 2010 she started to make changes to her diet. This is what first alerted me that something wasn’t right. We already ate healthy and ate as a family. She wanted to eat healthier, questioned what was in each food, refused all ‘junk’ foods. There was a pattern of foods questioned for health purposes suddenly disappearing off her diet even if the food was a ‘good one’. At first she was relatively calm, but as weeks progressed she would react over-the-top if any of the ‘forbidden’ foods were offered.<br />
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I first put her on the scales at home mid March and she had lost, but not a huge loss, not something to really worry about. But the intensity and difference in her was more than enough to say something was different.<br />
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By the end of April, she stepped up the process. All carbohydrates, fried food and sugar were now not allowed. Lunches were now only a yoghurt and fruit. Her weight by the end of April was now down more. I was now pushing her to eat, trying to break through what was going on. She was getting depressed, had outbursts of anger, and if angry refused to eat. It was like my daughter was disappearing into another parallel. She was physically present, sometimes seemingly herself, functioned at school and at home, but mentally and emotionally lived in another world.<br />
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Mid May she let slip her last period was in March. Her food portions were slowly getting smaller. The June long weekend was the crunch point. She was very down, ate very slowly and little. We were in the doctor surgery on the Tuesday afternoon. Her depressive state was also a concern. Thankfully the doctor scheduled weekly visits, I am very grateful he didn’t write Sophie off as a ‘teenage thing’. His notes prove he diagnosed Anorexia then.<br />
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June was mainly keeping Sophie busy on weekends as she was very depressed, enough to be suicidal. We had the doctor’s clinic emergency phone number on speed dial. She was angry, aggressive, unapproachable. Other times she would just cry and sob in your arms. She was totally lost. Her eating patterns become more rigid, portions smaller, there was real fear in her eyes and actions when ‘bad’ foods were given to her. And she just couldn’t eat them, was unable to even try. She would collapse into tears. Her weight plateaued underweight for a bit, then began the slide down that couldn’t be stopped. We had a counsellor for a while, but after a month she gave up. Said she didn’t know what to do and couldn’t reach Sophie. We were given a referral to a child psychiatrist but her appointments were so booked, we couldn’t get one until September. The doctor was the only lifeline we had in trying to save Sophie.<br />
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In July we went away for two weeks (with emergency plans in place), it was the worst holiday we ever had. Breakfast and lunch were now apples, dinner was a small serve of what we had, with a major amount of coaxing to eat. She didn’t drink anything except a glass of milk. She was very cold all the time, was slightly yellow, painfully thin. Her breath was sour, old people kind of smell. Her hair was beginning to fall out. When we got back she stopped eating completely. A glass of milk a day was all she was having. And we still could not admit her to hospital, as she was not the required low weight to do so. Her medical obs of blood pressure, temp and heart rate were also not low enough for admittance. Trying to force her to eat, and be the food police just didn’t work. Sophie refused to eat, refused to do anything. She would sit so close to the fire to keep warm. She now had the fine hair covering on several parts of her body. She smelt, a decaying, old horrible smell. It was so confronting. I used to be terrified to go up in the mornings to wake her, in case she was no longer with us. When sitting at the table with us, she would just lie her head down on her arms and just lie there. There wasn’t enough energy or interest to do anything more. But still she kept up her schooling with an intensive obsession.<br />
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In August, my daughter just disappeared into herself. No emotion, no fear, no anger, just a bare existence. Didn’t talk to anyone. She must have been in a lot of physical pain too but nothing registered across her face or emotions. Finally in mid August her medical obs failed. Her weight, temp and heart rate were low enough to cause her harm, and her blood pressure was dropping significantly. Finally we could get into hospital to save her. She barely raised a whimper when she was taken for admission. She seemed to be more content to go into hospital despite what that may bring, rather than she or us trying to save her. Her weight was now about significantly underweight, her temp was down to almost 35 and her heart rate in the daytime was in the low 40’s. In hospital we discover her night heart rate was getting down to 38 or lower. There were no beds in ICU so the children’s ward monitored her in their intensive care bed, pumped her with electrolytes, potassium, fluid, and didn’t give her a choice of eating by mouth, it was too late. Sophie was given a NG feed and a list of rules to abide by so she wouldn’t use any energy she didn’t need to.<br />
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For the next 8 weeks this where she stayed. The hospital experience didn’t heal the anorexia, it didn’t make her decide to recover. It just saved her medically. She collected a team to work with her once she left hospital. The anorexia changed and adapted to the new circumstances. It developed a rigid diet that Sophie would only eat for the next year. It developed new coping patterns, become physically and verbally aggressive. It controlled Sophie entirely, barely let my daughter come out and be seen. We had a brief month after hospital when Sophie was happy and seemed to be on the mend. Then the anorexia took over and buried her again. In 6 months she was back in hospital for another 9 weeks. And after 4 months back in hospital again for another week. This was her turning point, when she decided enough was enough and it was time to fight back. In her own words, it was like living in a horrible nightmare and she did not want to keep living that anymore.<br />
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From a treatment point of view, we used a very broken down form of the Maudsley Approach. FBT didn’t work great for our family dynamics and Sophie could not move from her safe foods. She ate the amount given, very very occasionally tried a new food but that was as far as we could get her. I prepared all foods and kept her out of the kitchen. After the 3 hospital admission, this is when she finally decided to widen her diet. It took a couple of years though to slowly introduce new foods and get her to be able to eat them regularly. Now she can intuitively eat or be flexible in her eating habits. It takes getting to full recovery to achieve this step though.<br />
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She had a team of five that were her support/medical team outside of hospital. It was after second admission that this team with the new dietitian really began to strongly hold Sophie and support her. She learned that they would not let her fall and would follow her to the end to keep her safe. We had a paediatrician, GP, psychiatrist, psychologist and dietitian. Each one as important as the other and all working together and in constant contact. The psychiatrist was the over arching lead.<br />
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From a family point of view, we all lived and had anorexia too. It is never just the person who has the illness that suffers. You all do. Our job was to get her to treatment, support her and to learn how the environment around Sophie was affecting her and what needed to change. We had to learn ourselves how to survive the stresses (hell) of the eating disorder, how to relate to it and to work against it. We had to treat our daughter on the front-line of combat to keep her safe and alive, until she was ready and able to take over the task herself and to always, always stay alert. It is still a learning curve, each phase of recovery requires new knowledge and understanding of just how an eating disorder lives, breathes and constantly re-adapts itself so it can survive.<br />
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It took her 5.5 years from start to finish to be pronounced fully recovered. The hope is this that recovery is real and attainable. But it’s not easy and treatment and support matter a great deal in this journey. Early diagnosis and intervention are critical, sticking with therapy long after weight is gained, being aware and putting in safe guards around daily life and routines are all key points for success. Learning what other comorbids and illness you may have also affect the journey to recover and how to stay recovered. Anxiety, OCD, depression, along with high functioning aspergers are my daughter’s lot in life. Learning to manage these successfully means slipping back into anorexia is avoided.<br />
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One day I hope my daughter will talk about it and understand what led her there and why. For now she is still blocking that part and doesn’t want to share her journey with anyone. It is still too raw, too frightening, too close.Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-56124094067596947472015-04-25T11:23:00.005-07:002015-12-04T11:39:10.873-08:00Dear ICED: Dying, Waiting in Ontario<div align="LEFT" style="margin-bottom: 0in;">
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<em>Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!</em></div>
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<span style="color: black;"><span style="font-family: "arialmt" , sans-serif;"><span style="font-size: small;"><strong>Dying, Waiting in Ontario</strong></span></span></span></div>
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<strong><span style="font-family: "arial";">Suze Nelson</span></strong></div>
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<span style="color: black;"><span style="font-family: "arialmt" , sans-serif;"><span style="font-size: small;">We live in Ontario, Canada, where much to our shock when my daughter was diagnosed with AN at 19, we quickly learned that our provincial health care would not cover treatment costs, unless of course she was DYING in hospital. Canada falsely prides itself on universal health care; no such healthcare exists for eating disorders. ED treatment here is 100% two-tiered – if you have funds, you can receive treatment. If not, tough luck. Your child dies.</span></span></span></div>
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<span style="color: black;"><span style="font-family: "arialmt" , sans-serif;"><span style="font-size: small;">Disgusted and enraged doesn`t begin to cover my feelings on this. We were absolutely panicked and terrified that she would not survive due to our lack of finances. </span></span></span></div>
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<span style="color: #222222;"><span style="font-family: "arialmt" , sans-serif;"><span style="font-size: small;">We immediately launched a successful fundraising campaign drawing media attention and support worldwide. This allowed us to finally start the application process by getting her name on the waiting list at a well known ED treatment facility here in Ontario. Between diagnosis and admission several very scary months went by. Let me be clear - the success of our fundraising campaign campaign was the ONLY REASON SHE RECEIVED TREATMENT. Sufferers in Ontario DIE WAITING for treatment.</span></span></span></div>
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<span style="color: black;"><span style="font-family: "arialmt" , sans-serif;"><span style="font-size: small;">My daughter completed one full 12 week inpatient program at this centre and was then discharged to live on her own, having no aftercare or followup plan in place. She relapsed soon after discharge and was readmitted for another round. Again, no aftercare or follow up upon release. One year later, a major relapse and a five month inpatient program at same centre. This time my daughter created her own supports and plan for discharge.</span></span></span></div>
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<span style="color: black;"><span style="font-family: "arialmt" , sans-serif;"><span style="font-size: small;">At no time during these three admissions over 2 years at this treatment facility was our family welcomed, educated or included in my daughter`s treatment or recovery plan, let alone informed of her medical condition. As a family we have had no DBT, no FBT but one hell of a lot of BS and WTF. Current research demonstrates that family involvement and support is a key element to sustained recovery. </span></span></span> </div>
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<span style="color: black;"><span style="font-family: "arialmt" , sans-serif;"><span style="font-size: small;">My girl is now 24, fighting for full recovery, living with best friend and her cat. </span></span></span></div>
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<span style="color: #222222;"><span style="font-family: "arialmt" , sans-serif;"><span style="font-size: small;"><span class="il">Suze</span> Nelson is a single mum of three strong and beautiful children and a tenacious EDucator/activist living in Peterborough, Ontario </span></span></span></div>
Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-52491682930156484772015-04-24T20:21:00.001-07:002015-12-04T11:39:41.595-08:00Dear ICED: "We need change NOW"<div style="text-align: center;">
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<em>Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!</em></div>
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<span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">My daughter was diagnosed with Anorexia Nervosa in March 2007. She was just 14. Turns out she also had depression, which to my shame I hadn’t realised. We’d moved home the previous year as her dad and I had split up; I’d moved closer to work and my family. It made sense to move, but it meant that she and her younger brother had to change schools. I knew her brother would be fine, but my daughter was always anxious as a child and found the change hard. Now I know that anxiety and hyper-sensitivity can be a sign of being predisposed to an eating disorder (ED). To my knowledge, no-one in my family ever had an ED. </span></div>
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<span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">We were referred to CAMHS (Child & Adolescent Mental Health Services) and were seen within a few weeks. We were asked about diet, family dynamics, recent events etc. I was told to feed her three meals and three snacks a day. But these professionals didn’t have the resources or the knowledge to tell me </span><span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: italic; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">how</span><span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> to re-feed my daughter. Mealtimes were a battleground. If only I knew then what I know now, nine years later. At one stage they sent a nurse round to help, but all she did was get cross with my daughter and told her she was ungrateful for not eating the food I’d cooked. I instinctively knew that was the wrong approach! I was right in that, at least. </span></div>
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<span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Many CAMHS and Adult Services still don’t provide up to date ED treatments. In fact, one particularly difficult female clinician, who was assigned to my daughter when she was 20, actually said to me a couple of years ago on my questioning: “This is how we have always done it, since the 1970’s.” This old-school approach needs to end! </span></div>
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<span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Resources in mental health services are desperately needed in general, but more specifically we need: </span></div>
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<span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">more ED hospitals/beds</span></div>
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<span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">more and better qualified staff</span></div>
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<span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">vastly improved community care</span></div>
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<span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">more psychological therapists for both in-patient and community care</span></div>
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<span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">access to latest research and treatment methods</span></div>
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<span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">law changes to allow over 18’s suffering with ED’s to remain under parents’ care</span></div>
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<span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Currently in UK, as soon as you hit 18 the parents are rarely consulted and are frequently told to back off. The UK’s legal system means that an 18 year old can leave home and, if deemed ill enough, are entitled to Disability Benefits, rent payments to a certain level and just enough money to live off. All this does is provide a ‘safe’ bubble that allows them to isolate further into their illness, unless the sufferer </span><span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: italic; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">wants</span><span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> to recover and works with their treatment team. If not – and many sufferers, my daughter included, finds it too hard to eat what their bodies need when alone – they face a miserable life of purgatory. If they even survive.</span></div>
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<span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">We need change NOW! </span></div>
<br />Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-63340360771424636472015-04-24T08:55:00.004-07:002015-12-04T11:39:56.674-08:00Dear ICED: Getting Family Based Treatment for Eating Disorders Early Can Save Lives!<b style="font-weight: normal;"></b><div dir="ltr" id="docs-internal-guid-345ce325-ec22-256e-d715-94d07c926aa2" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 0pt;">
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<em>Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!</em></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: bold; text-decoration: none; vertical-align: baseline;">Nell Justice</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: bold; text-decoration: none; vertical-align: baseline;">Las Vegas, Nevada, USA</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: bold; text-decoration: underline; vertical-align: baseline;">Getting Family Based Treatment for Eating Disorders Early Can Save Lives!</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">In 2012 my youngest child was diagnosed with Anorexia Nervosa. She was 16. She was a competitive</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">soccer player, top of her game. She quit soccer, couldn't eat. I thought she was just depressed because of quitting. She complained of feeling bloated and she started having anxiety attacks and couldn't eat. She had lost 17 pounds in a very short time. She was small to begin with. </span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">I had no idea what was happening, she was losing weight and couldn't eat. I took her to the</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">pediatrician where he diagnosed her with Anorexia Nervosa. He explained that he did not handle</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">patients with AN but gave me the name of a psychiatrist, told me to read the book, Eating With Your</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Anorexic by Laura Collins. I was also advised to go to UCSD if the psychiatrist didn't work out. </span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">On my own I found, Around the Dinner Table (FEAST). Here I learned about family based therapy. We found the only therapist that did FBT in our state of Nevada and took her there.</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> With this evidence-based approach FBT, group therapy and DBT skills, my daughter is now in</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">recovery. She continues to go to therapy every 2 months just to stay on top of things. My daughter remembers feeling fat at age 4. She remembers restricting at age 11. I never knew any symptoms of eating disorders. I knew that she was a perfectionist and had OCD. I didn't know those were personality traits that are common in a person who has a brain wired to develop an ED. Watching a child roll around in a fetal position calling themselves a fat pig and shaking to put a fork of food to their mouths is horrible! Watching them starve because they just can't eat is beyond painful.</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Eating Disorders are a mental illness! A Brain disorder! </span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">More can and should be done to help those who suffer! More research, more education, more evidence-based treatment and more insurance coverage! Families should not have to go bankrupt to get medical care for their dying loved one! I will never stop trying to educate others, it could save a life!</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Nell Justice, Las Vegas Nevada</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">PS. The psychiatrists knew NOTHING about eating disorders and she didn't accept insurance. First</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">visit was $500 dollars and then $300 dollars an hour! Parents are desperate to get help and often go</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">broke trying to find it!</span></div>
</b>Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com1tag:blogger.com,1999:blog-7728923136858799485.post-58524162282562913972015-04-23T10:05:00.001-07:002015-12-04T11:40:23.780-08:00Dear ICED: Ongoing support is needed to sustain recovery!<b style="font-weight: normal;"></b><div dir="ltr" id="docs-internal-guid-379e85de-e73c-4b66-094c-5bd4e3e36dd9" style="line-height: 1.38; margin-bottom: 10pt; margin-top: 0pt;">
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3wg9Qvjis4H740bNBP7DehUi3pCBZ__PN9EIX60mRPEuQAU68vZmb5-p1rRwBEb7x0YeQaRf3J9xvHFuCVX2wut2S4GCoVfGIigIgy5HGGO6EZ4aY0HPIU-cmmJtF8GRiRVYw3FHwP1fU/s1600/globe.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3wg9Qvjis4H740bNBP7DehUi3pCBZ__PN9EIX60mRPEuQAU68vZmb5-p1rRwBEb7x0YeQaRf3J9xvHFuCVX2wut2S4GCoVfGIigIgy5HGGO6EZ4aY0HPIU-cmmJtF8GRiRVYw3FHwP1fU/s1600/globe.jpg" width="320" /></a></div>
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<em>Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!</em></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Eating Disorders: Ongoing support is needed to sustain recovery! </span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">My 16 yr old daughter was officially diagnosed with Anorexia Nervosa in November 2014 with the help of her dietitian she had been seeing since July. The seriousness of her illness came to light when I discovered she had been wearing weights for her weekly weigh-ins. Due to the seriousness of her illness, her dietitian advocated for residential treatment center over going through PHP or IOP for her best chance of recovery.</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">With a broken heart, we started the process. There were only two options in-network in our state (neither of which I felt good about); so we went out of state which was thankfully only a short drive away. We got through the intake, got all the blood labs, tests needed done; and got our admit date. I thought everything was a go. I was wrong.</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">We showed up for our admission appointment and had to go through more intake process, only to find out insurance had not officially authorized treatment. After 6 hours of waiting, insurance denied authorization. They denied because my daughter had not ‘stepped up’ through the process with Partial inpatient (PHP) or Intensive outpatient (IOP) programs. The treatment center fought for us. Two days, only two days, were finally approved – AND ONLY because after looking our insurance saw that we had no options for PHP or IOP in our immediate area. I remember I thought “two days? Why bother? I don’t want her to go through this and then be sent home”, this just wasn’t right. Four days later she was sent to the ER for some medical stabilization. Get the message now insurance?? She went back to the residential treatment center after the hospital discharge. My daughter ended up being there for 47 days, approval coming in 3-5 day increments. I understand the reason for approval coming in short increments, but it is extremely hard on parents who are fighting for the life of their child. She received extra time there due to the fact we had no treatment options in our area. My daughter’s stay there was successful. She left weight restored, happy, and motivated for recovery.</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Fast forward a few months through PHP and IOP at one of few options for treatment as I said, an hour away from home. The treatment center that we were able to go to was not a good step down program for my daughter. In addition to focus on regularizing eating she also needed psychodynamic therapy. Her time there ended up being traumatic for her, leaving her with a lot of anger, and leading her to the beginning of relapse. Now we are facing the same difficulties finding an outpatient ED therapist. I never knew getting treatment for such a devastating illness would be so hard and complicated.</span></div>
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<span style="background-color: transparent; color: black; font-family: "calibri"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">The author prefers to remain anonymous. </span></div>
</b>Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-52583067720637926312015-04-22T17:58:00.001-07:002015-12-04T11:40:48.947-08:00Dear ICED: "You are too FAT to have an Eating Disorder”<div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3wg9Qvjis4H740bNBP7DehUi3pCBZ__PN9EIX60mRPEuQAU68vZmb5-p1rRwBEb7x0YeQaRf3J9xvHFuCVX2wut2S4GCoVfGIigIgy5HGGO6EZ4aY0HPIU-cmmJtF8GRiRVYw3FHwP1fU/s1600/globe.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3wg9Qvjis4H740bNBP7DehUi3pCBZ__PN9EIX60mRPEuQAU68vZmb5-p1rRwBEb7x0YeQaRf3J9xvHFuCVX2wut2S4GCoVfGIigIgy5HGGO6EZ4aY0HPIU-cmmJtF8GRiRVYw3FHwP1fU/s1600/globe.jpg" width="320" /></a></div>
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<em>Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!</em></div>
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<h1 dir="ltr" id="docs-internal-guid-0fe0ef54-e3c7-ad13-c38f-726964eee517" style="line-height: 1.2; margin-bottom: 0pt; margin-top: 24pt;">
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<span style="background-color: transparent; color: #335b8a; font-family: "calibri"; font-size: 21px; font-style: normal; font-variant: normal; font-weight: bold; text-decoration: none; vertical-align: baseline;">Nurse told my daughter “You are too FAT to have an Eating Disorder”</span></b></h1>
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<b style="font-weight: normal;"><span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">In her preteens, my daughter became obese over the course of a year because of a medical issue. As we got the issue under control with medication, she started losing some of the weight. But it wasn’t happening quickly enough, in her mind. She quietly decided she was going to speed up the weight loss. She started skipping school lunch. Then she started telling us she had eaten a big lunch and didn’t want dinner.</span></b></div>
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<span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">“I wanted to lose weight faster,” she said. “One day the voice was just there. It was like someone flipped a switch. Any time I thought of food, it started telling me that I was ugly. Disgusting. Fat. I wasn’t worthy of food. I wasn’t even worthy of living. Nobody </span><span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: italic; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">really</span><span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> loved me. Only the voice loved me. Everyone was lying to me, but the voice was telling the truth. That’s how it was when ED entered my life. I didn’t know what it was then. I thought it was the truth.”</span></div>
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<span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">She didn’t share her food struggles. We thought her weight loss meant her medications were successfully managing her medical condition. She was still overweight. Her moods started plunging into a big black hole. She failed classes. Got in trouble at school. Stopped activities she loved. Finally, she was hospitalized with depression and suicidal thoughts.</span></div>
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<span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">In the hospital, she told her therapist she thought she had an eating disorder. It was discussed in therapy, but as it was a short-term hospitalization, the real work was supposed to start after discharge.</span></div>
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<span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Except at discharge, which happened without me present, the discharging nurse looked at my daughter, said </span><span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: italic; font-variant: normal; font-weight: bold; text-decoration: none; vertical-align: baseline;">“you are way too fat to have an eating disorder”</span><span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: bold; text-decoration: none; vertical-align: baseline;"> </span><span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">and took whiteout to the line where the psychiatrist had written the diagnosis “</span><span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: bold; text-decoration: none; vertical-align: baseline;">Eating Disorder Not Otherwise Specified.” </span></div>
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<span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">My daughter didn’t tell me. She was ashamed. “I had just gotten evidence that I was a failure at everything,” she said. “I couldn’t even get having an eating disorder right.”</span><span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"><br class="kix-line-break" /></span><span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">It took her two more months of depression and self-harm to tell me what happened. Today, she has been in treatment for ED for almost five months. Therapy and nutritionist wasn’t enough. She’s spent another stint inpatient with suicidal thoughts. She’s heading for a partial hospitalization program. </span></div>
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<span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Because she is still overweight, and because she is actively fighting the ED voice in her head, she’s not a candidate for long-term residential care. The thoughts that torment her, that make her decide to alternately binge/purge and restrict aren’t visible. She wants help. She wants to get better. But finding the right treatment fit for her is an ongoing struggle. And we’ve fought to find medical providers who are informed and educated enough to know that </span><span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: italic; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">an overweight person can suffer from an eating disorder and need just as much help as an underweight person.</span></div>
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<span style="background-color: transparent; color: black; font-family: "cambria"; font-size: 16px; font-style: italic; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">The author prefers to remain Anonymous at this time. </span></div>
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<span style="background-color: white; color: black; font-family: "helvetica neue"; font-size: 15px; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Note: Eating disorders not otherwise specified (EDNOS) are eating disorders that do not meet the exact criteria for anorexia or bulimia nervosa but are considered serious conditions. Binge-eating disorder is a type of eating disorder and EDNOS is the most common diagnosis among people who seek treatment.</span></div>
</b>Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0tag:blogger.com,1999:blog-7728923136858799485.post-14666504478056710672015-04-22T08:05:00.003-07:002015-12-04T11:41:10.349-08:00Dear ICED: Turned away because they only took females<div style="text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3wg9Qvjis4H740bNBP7DehUi3pCBZ__PN9EIX60mRPEuQAU68vZmb5-p1rRwBEb7x0YeQaRf3J9xvHFuCVX2wut2S4GCoVfGIigIgy5HGGO6EZ4aY0HPIU-cmmJtF8GRiRVYw3FHwP1fU/s1600/globe.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj3wg9Qvjis4H740bNBP7DehUi3pCBZ__PN9EIX60mRPEuQAU68vZmb5-p1rRwBEb7x0YeQaRf3J9xvHFuCVX2wut2S4GCoVfGIigIgy5HGGO6EZ4aY0HPIU-cmmJtF8GRiRVYw3FHwP1fU/s1600/globe.jpg" width="320" /></a></div>
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<em>Eating Disorders are brain-based, biological illnesses with a strong genetic component and a psychosocial influence. They are not disorders of choice, vanity or family dysfunction. As with autism and schizophrenia, we don't know everything, but we do know we were wrong about a lot for a very long time. Help us challenge stigma and fight for resource parity for these deadly disorders!</em></div>
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<b style="font-weight: normal;"><span style="background-color: white; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: bold; text-decoration: underline; vertical-align: baseline;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Turned away because they only took females</span></span></b></div>
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<b style="font-weight: normal;"><span style="background-color: white; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Maria Candrill</span></span></b></div>
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<span style="background-color: white; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"><span style="font-family: "arial" , "helvetica" , sans-serif;">Staten Island, NY </span></span></div>
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<span style="font-family: "arial" , "helvetica" , sans-serif;"><span style="background-color: white; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">Sal's eating disorder began about 9 years ago.He said that when he was in 6-7th grade that the kids would make fun of him because he was chunky. When he started high school he travelled to the city and joined the football team. From September to December he lost about 40 pounds. When his friends from junior high saw him over vacation they didn't even recognize him. He transferred schools in December and joined the track team. He said that during that summer he got sick and he threw up. He said that something just clicked in his head that he could eat and just throw up. I didn't realize that anything was wrong for over 6 months. One night I heard him calling me from the bathroom. He was lying on the floor with vomit all over. He was diagnosed with bulimia in 2006. From the age of 16, he has been in and out of treatment centers. Back then I knew nothing. I made a lot of phone calls, did a lot of research online and read many books. Sal was turned away from many facilities because they only took </span><span style="background-color: white; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">females. When I found a place that took males I had issues with my insurance. After nine years I'm well educated. Thru NEDA, I met Lisa Kantor and she has helped me with several issues that I have had with the insurance. I still self paid hundreds of thousands of </span><span style="background-color: white; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">dollars.</span><span style="background-color: white; color: black; font-family: "helvetica neue"; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> Sal has been to New York(where we live) Wisconsin, California,Colorado and Arizona for treatment. Some of the facilities he has gone to several times. He has had some periods of time where he was stabilized and in a good place but </span><span style="background-color: white; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> </span><span style="background-color: white; color: black; font-family: "helvetica neue"; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">unfortunately since he turned 21 it has been very difficult.</span><span style="background-color: white; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> </span><span style="background-color: white; color: black; font-family: "helvetica neue"; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">He would go to the hospital to be stabilized and then to a psych ward which couldn't deal with ED. The cycle would continue until I would pay for treatment. I would arrange for flights and transportation to take him to a facility because he would say that he wants help. Then he would get there and not comply. This past year I flew him from AZ to CA to WI to AZ to CA back to NY.He went from hospital to treatment center to psych wards to homeless shelters to hotels. I had to keep a log for every day so I could keep track of where he was.I was calling hospitals and psych wards to try and locate him. I couldn't always get information because of the HIPA laws and then he wouldn't always sign the papers so the facility could speak with me. It depended on his mood.It was crazy.I brought him home the day before Thanksgiving 2014 because he was getting kicked out of another facility for not complying. It was a choice between sending him to a homeless shelter again in CA or bringing him home. Unfortunately he brought his ED home with him. It was not healthy for myself, my daughter and my boyfriend, so I told him he had to leave if he wouldn't get help.It was one the the toughest decisions I ever had to make. He left on Jan 17, 2015 because I could no longer have ED in my home.He went to live with a friend in Colorado. He ended up in several hospitals and a psych ward.</span><span style="background-color: white; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> </span><span style="background-color: white; color: black; font-family: "helvetica neue"; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">On Mar. 20th I flew him back to CA to go to a facility that he had gone to before last year. He lasted 11 days without any ED behaviors and then he refused to take his meds. It was decided yet again that he needed a higher level of care. He was taken to a hospital. As I am writing this I was informed that he will be transferred today to a psych ward and when he has been ED behavior free he will be able to return to the ED facility. The cycle continues.I will no longer pay for any more flights or any more treatment that is not covered under the insurance. Tomorrow he will be 24 years old. I am learning to accept that I can't fix my son. I can't save him from the demons inside him.</span><span style="background-color: white; color: black; font-family: "arial"; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;"> </span><span style="background-color: white; color: black; font-family: "helvetica neue"; font-style: normal; font-variant: normal; font-weight: normal; text-decoration: none; vertical-align: baseline;">I have always said that Sal is welcome to live with me but ED is not allowed.I still believe that there is hope and someday Sal will be ready for recovery.</span></span></div>
<span style="font-family: "arial" , "helvetica" , sans-serif;"><br /></span></b><span style="font-family: "arial" , "helvetica" , sans-serif;"></span>Anonymoushttp://www.blogger.com/profile/07725569776131176381noreply@blogger.com0