Community Magazine

Letter to Butterfly from IEDA

By Survivingana @survivingana

Re blogged with permission from:

Dear Ms. Morgan and the Butterfly Foundation Team,

 Thank you for responding to our request for dialog. As mentioned in our initial conversation, International Eating Disorder Action (IEDAction) is a growing collective of over 2000 parents, carers and survivors. Our goals are to correct misinformation about eating disorders in the media and the general population, among healthcare systems and insurers and with eating disorders advocacy and treatment groups themselves. 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.  

Prior to IEDAction’s establishment, many of us were the target audience for efforts such as the Butterfly Foundations “Dis” campaign. Unfortunately such campaigns did not improve our understanding of eating disorders or access to treatment. Instead we now realize these campaigns trivialize eating disorders and in fact undermine efforts to ensure correct information about these life-threatening illnesses is broadly disseminated and they potentially undermine our collective efforts toward acomprehensive national response; hence our concern with the recent Butterfly Foundation campaign.  

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 the eating disorder community. It is our stancethat conflating societally-normed behaviors such as disordered eating and negative body image with the serious genetic, biological, psychosocial illnesses that are eating disorders is damaging. While we understand that Butterfly includes Body Image as part of its overall mission and we support promoting positive body image as a universal goal, promoting it as eating disorder prevention is not supported by research.

Our position is that body image and “feel good” campaigns should not be intermixed with true advocacy about eating disorders, and that such campaigns diminish the very real daily struggles of those impacted. We feel that an eating disorder organization such as Butterfly Foundation should focus on the priority needs articulated by the affected population. This includes a) public education on eating disorders with accurate information including the fact that EDs are biologically based mental illnesses with strong genetic influence; b) focus on ensuring diagnostic and treatment services; c) decreasing stigma around eating disorders by promoting the recently released by the Academy of Eating Disorders Nine Truths About Eating Disorders. (AED, 2015).

If the only information the general population receivedabout eating disorders came from the Butterfly Foundation they might very well believe that the main factor for developing an eating disorder is negative body image. We know that this is not true. We also know that heritability for eating disorders is high – 60% or more cases have genetic underpinnings. (Bulik, ICED Boston, 2015). To date there is no scientific evidence to suggest eating disorders are caused by body image concerns. 

While many people have body dissatisfaction issues and disordered eating, very few develop clinical eating disorders. “Love your body” and “don’t dis on appearance” may be great campaigns for the welfare of the general public, these messages—especially presented by an eating disorder organization—do nothing to further public understanding of eating disorders being genetic, biological brain-based illnesses. 

Campaigns such as yours are undertaken with good intentions; however as the affected community we strongly feel they do more harm than good. They detract from asking governments to ensure their mental health budgets are adequate to treat eating disorders. They detract from our requests to 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 funding and treatment services. And they are not meeting our needs. 

We do not deny that there are sociocultural and psychological components of the illness. However, factors being promoted in the current Butterfly Foundation awareness campaign give the impression that body image issues are the cause of eating disorders rather than a symptom of the disorder.

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 not feasible (Cuiipers P, 2003). Indeed some school-based ‘healthy eating’ initiatives have had deleterious effects (Pinhas, et al, 2013; Carter et al, 1997). To date there have been no studies to prove primary prevention for eating disorders is effective or even possible as was recently affirmed in the National Eating Disorders Collaboration Bulletin E-Bulletin #283. (NEDA, 2014).

According to a recent analysis Bailey, et al note “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.” (Bailey et al, 2014).

We are concerned that the “DIS” campaign perpetuates a myth that if you and your family do NOT buy into a “thin” or “looks-based” culture then you are safe from developing an eating disorder. That’s simply not true. People don’t care about funding what will never affect them. We are gravely concerned that perpetuating societal misunderstanding that eating disorders are about body image problems will hasnegative impact on treatment and research funding.  

 As you stated in your email, eating disorders are grossly underfunded and access to treatment is problematic, all the while creating a huge economic burden. We vehemently agree and would love to partner with you to change that. 

We are happy to consult with you and play a role in helping to develop your strategy and future efforts. We have many Australian members who would be pleased to engage with you to bring the movement forward to facilitate much-needed progress in education and treatment services to the many 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.

Best regards,

International Eating Disorder Action

Eating Disorder Parent Support

Aussie Support Group for Parents of Children with an Eating Disorder

The Dirty Laundry Project

Beating Eating Disorders 


Bailey AP, Parker AG, Colautti LA, Hart LM, Liu P, Hetrick SE. Mapping the evidence for the prevention and treatment of eating disorders in young people. Journal of eating disorders. 2014;2:5. 

Bulik, C. International Conference on Eating Disorders, Academy for Eating Disorders, Plenary Presentation, Boston, Mass. 2015.

Cuijpers P. Examining the Effects of Prevention Programs on the Incidence of New Cases of Mental Disorders: The Lack of Statistical Power. American Journal of Psychiatry.2003; 160 (8): 1385-1391

National Eating Disorders Collaboration Bulletin E-Bulletin #283., 2014.

Pinhas L, McVet G, Walker K, Katzman D, Collier S. Trading health for a healthy weight: The unchartered side of healthy weights initiatives. Eating Disorders. 2013; 21 (2): 109-116. 

Press Release: AED Releases Nine Truths About Eating Disorders. (n.d.). Retrieved June 8, 2015, from;= 

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. Disord., 22: 167–172. doi: 10.1002/(SICI)1098-108X(199709)22:2<167::AID-EAT8>3.0.CO;2D.;2-D/abstract

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