Tuesday, January 12, 2016

Eating Disorders: Yesterday's Theories are not Today's Knowledge

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of true and current awareness surrounding eating disorders it is always frustrating to read articles which perpetuate outdated myths and stereotypes.

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.  Others wonder why make a big deal out of it—if you don’t like it, move along.

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.

Research shows that people—and politicians and governmental research funding decision makers are 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.

IED performs a watchdog/rabble rouser function at times – alert for opportunities to push back on careless or false “awareness” pieces.  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, “Family Dynamics at the Dinner Table” is one such piece:

The qualifiers “may” and “some” do not excuse that this piece is a rehash and mish-mash of outdated research findings and beliefs lacking in citations and written by someone whose Internet footprint does not show specialized training in eating disorders. 

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 9 Truths about Eating Disorders, 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. 

Are there families with the issues outlined in this post who have kids with eating disorders? Without a doubt.  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.

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.”

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.

We have expressed to Eating Disorder Hope in the past, and want to reiterate that message, before posting a piece ask these questions:

1) Does recent research support this?
2) Does it reinforce outdated stereotypes and myths?
3) Does this help families and those affected?
4) Might this hurt those affected?

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.

Wednesday, January 6, 2016

Press Release: #WeDoAct


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. http://WorldEatingDisorderDay.instapage.com.

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.
On the heels of the release of the groundbreaking “Nine Truths About Eating Disorders”  a global grassroots effort for a World Eating Disorder Action Day was launched to draw attention to these devastating, yet treatable disorders.

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.”
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.

A Steering Committee comprising the 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 Trans Folx Fighting Eating Disorders will provide guidance and represent communities across the globe.
Contact and to join:

Facebook:  WorldEatingDisorderDay
Twitter:  WorldEDday and #WeDoAct
Email:  WorldEatingDisorderDay@gmail.com

Friday, January 1, 2016

Announcement: World Eating Disorder Action Day #WeDoACT

World Eating Disorder Action Day
Inaugural Event: June 2, 2016

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.

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.

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.

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.

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.