International Eating Disorders Action: 2015 Achievements

International Eating Disorders Action:  2015 Achievements

January 2015

• IEDAction sent a letter 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.

• 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 The site is designed to have an educational feel yet many articles were outdated and promoted the debunked psychosomatic family illness model (the eating disorder as an expression of family dysfunction).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.

February 2015

• 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.

• 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.

March 2015

• 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.

April 2015

• 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.

• 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.

• 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.

May 2015

• 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.

June 2015

• 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.

• 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.

July 2015

• 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.

• ​ 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.

August 2015

• 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.

September 2015

• ​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.

• 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.

October 2015

• ​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.

• 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.

November 2015

• 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.).

• 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.

December 2015

• ​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.

• ​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.

• ​​IEDAction mentioned in Eating Disorders: Journal of Treatment and Prevention, a peer reviewed journal in an article by a leading respected eating disorder professional addressing our concerns about conflation of body image with eating disorders as psychological illness.

• 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.

• 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.

Concerns about Jamie Oliver's strategy to weigh kids in school

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.
Jamie Oliver demands children are weighed each year at school to end childhood obesity

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.

The Skinny on BMI Report Cards
EDC: BMI Talking Points
Pediatrics, 2009 Nihiser: BMI in Schools
Trading Health for a Healthy Weight: Pinhas et al case series
Facts and Concerns About School-Based BMI Screening
Guidelines for Childhood Obesity Prevention Programs
Position Statement: AED Opposes BMI Reporting and Fitnessgrams in Schools

Additional articles on school-based BMI screenings:

http://www.examiner.com/list/seven-sound-reasons-not-to-conduct-bmi-screening-schools?cid=db_articles 

http://www.kevinmd.com/blog/2014/07/school-boards-fancy-health-care-providers.html

http://articles.chicagotribune.com/2013-05-17/health/ct-met-bmi-backlash-20130517_1_bmi-childhood-obesity-rates-muscular-people

http://nypost.com/2014/05/22/nyc-says-this-girl-is-fat/

http://www.anad.org/news/anad-stands-with-aed-to-oppose-bmi-in-schools/

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

http://www.elementsbehavioralhealth.com/featured/school-healthy-eating-programs-dangerous-for-some-children/

http://drlissakblog.blogspot.co.uk/2014/08/raising-child-in-world-of-dieting-part-i.html

http://www.cnn.com/2013/09/24/opinion/navarrette-fat-letters/

 http://bedaonline.com/WSAW2014/wsaw-2014-kids-programs-schools-carmen-cool-ma-lpc/#.VC8wjsu9KSP 

http://salveopartners.com/fairies-unicorns-bmi/

On 2 December 2015 at 21:43, International Eating Disorder Action <iedaction.global@gmail.com> wrote:

Dear Jo,

Thank you so much for reaching out to us . I'm copying my colleague at
IEDaction Jennifer Denise Ouellette as well.

As you are aware we have been concerned about the increased focus on
working with children in schools to provide information on obesity and now
on the statement by Jamie Oliver on in school weighing. Of course we do
understand that communities and countries are concerned about the health of
their children - and that wholesome foods are important.

However we are very concerned about the approach taken to achieve impact.
Research shows that weighing kids in schools and implementing anti-obesity
and weighing kids in school can lead to INCREASED rates of obesity and
eating disorders. It can do more harm than good .

In the USA, Arkansas has done anti-obesity campaigns in schools since 2002.
It has led to increased rates of obesity and eating disorders triggered at
younger ages. The CDC does NOT recommend weighing in schools.

Kids actually NEED more Fat and calories to prep for their growth spur. And
based on longevity the optimal BMI range for an adult female is 25-29 the
current "overweight" category. So we need to be careful in designing
programs to do no harm and reflect research.

We would very much to dialogue with you - we represent a large group of
parents, carers and affected people.

Best

Amy Cunningham
International Eating Disorder Action

On Thu, Dec 3, 2015 at 6:02 PM, Jo Creed <jo.creed@jamieoliver.org> wrote:

Dear Amy

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.

We absolutely appreciate your concerns on this issue, and that it is a very sensitive issue. 

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.

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. 

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.

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.

Best wishes,

Jo

From: Amy E Cunningham <amy.in.dar@gmail.com>
Date: 3 December 2015 at 17:20:26 CAT
To: Jo Creed <jo.creed@jamieoliver.org>
Cc: International Eating Disorder Action <iedaction.global@gmail.com>, "jdeniseouellette@gmail.com" <jdeniseouellette@gmail.com>, Peter Berry <peter.berry@jamieoliver.com>
Subject: Re: Weighing children in school

Greatly appreciate your response the opportunity to dialogue.

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.

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.   

I would be very interested to see any data showing that school weighing works in helping kids develop overall health.

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.

Warm regards,Amy 

NEDA 2015, Sea Change: Reflections from Celia

International Eating Disorder Action members review, recap, and reflect on the #NEDA2015 Conference that took place October 1-3 in San Diego, CA

NEDA 2015, Sea Change: Advocates are being heard and respected!

By: Celia Robicheau

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.

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.

My overall impressions from NEDA 2015:

• 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.
• Advocacy presence at NEDA was huge. Educated parents shared tables with professionals and I felt heard and taken into consideration.
• 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.
• Family/parents role is growing in support as key but sadly we still saw many professional bluntly dismiss the parent role.
• Veritas, ERC and Lauradete representatives actively reached out to parents:
  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”
• 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
  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”.
• There are is still a lot of awareness work to be done by advocates and professionals to create a unified front.
• 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.
• 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.
• 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.
• 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.

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.


*Picture taken at the UCSD Dinner*

NEDA 2015, Sea Change: Reflections from JD

International Eating Disorder Action members review, recap, and reflect on the #NEDA2015 Conference that took place October 1-3 in San Diego, CA

NEDA 2015, Sea Change: Family involvement, marginalized groups, and evidence based treatment

By: JD Ouellette

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.

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.

 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.  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.

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.

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.  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.

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.

This year, as last year, the Family Panel was the most fulfilling, moving, healing portion of the program.  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.

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.  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.

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.  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.  All of this was fantastic to the point of me still being exhausted a week later!

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.  NEDA’s response when informed of this (not by me) was gratifyingly concerned.

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.

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.  We are hearing amazing things about Stanford’s Remote FBT Delivery study.

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.

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.  

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.

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.  To recovery!

*Picture taken in Balboa Park*

NEDA 2015, Sea Change: Reflections from Julia

International Eating Disorder Action members review, recap, and reflect on the #NEDA2015 Conference that took place October 1-3 in San Diego, CA

NEDA Conference: discussion of key neurobiological findings
By: Julia Fuentes

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.

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.

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. 

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.


*Advocates meeting, many for the first time in person*

Global Partnerships and the MOM March

IED 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.

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.

Please share this with any other groups you think would willing and able to support this effort!

M.O.M. March Now in Canada!

Get More Details And Make a Donation At MarchAgainstED.com!

Field Review: Proposed BHC Standards for Eating Disorders Care, Treatment, or Services

Field Review: Proposed BHC Standards for Eating Disorders Care, Treatment, or Services

Please see the official invite HERE.

Our own Amy Cunningham was asked to be on the Academy for Eating Disorders Advisory board. The chair of the board Karine Berthou, along with Exec Director Elissa Myers - are spearheading an initiative to include many more groups in their database.

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, suicide hotlines, university Greeks, coroners associations and on and on.

IED Action needs your help to provide valuable input! Can you please provide input into the GCN with the names and websites of groups we should include - formal and informal. Join us on facebook to add your valuable input or email iedaction.global@gmail.com

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. 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. 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. If you have comments on the proposed standards, send them directly to the Joint Commission as per the instructions on their website, with a copy to the AED MCSC, or just send your comments directly to theAED MCSC if you prefer. Together we are making progress! Dr. Carolyn Becker Professor of Psychology at Trinity University in San Antonio, TX 2015-2016 President of the Academy for Eating Disorders

Conference call: IED Action, Aspire and the Butterfly Foundation

IED Action, Aspire and the Butterfly Foundation
Summary of Conference Call
July 9, 2015

In Attendance:

Christine Morgan, CEO/Director, the Butterfly Foundation
Taryn Harris, Communications Coordinator, The Butterfly Foundation
Cate Sangster, ASPIRE
Amy Cunningham, IEDACTION
Jennifer Ouellette, IEDACTION

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.

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.**

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.

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).

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.

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.

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.

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.

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.

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.

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.

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.

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.

* 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).

** 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).