Thursday, June 11, 2015

Letter to The Butterfly Foundation

Dear Ms. Morgan and the Butterfly Foundation Team,
Thank you for responding to our request for dialogue. 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 populationThis 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 goodThey 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,
Adults Supporting Peers n Recovery from Eating Disorders (ASPIRE)

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.
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 http://www.aedweb.org/web/index.php/25-press-releases/163-press-release-aed-releases-nine-truths-about-eating-disorders?quot;=
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. http://onlinelibrary.wiley.com/doi/10.1002/(SICI)1098-108X(199709)22:2%3C167::AID-EAT8%3E3.0.CO;2-D/abstract


  1. To IEDAction,

    As a supporter of the Action community, eating disorder fighter and journalist I am somewhat dismayed to write this; however, there are certain truth that need to be addressed, or, rather factual errors that cannot be overlooked.

    Firstly, the interpretation of research is incorrect -- at most dangerous. Your statement and citation on the prevention of ED is false. You quote Cuiipers P, 2003 as this source. A review of the abstract suggests eating disorders may not have been involved in the study. It was a meta-analysis of 13 mental illness studies, of which eating disorders were not one of them. The research confirms: "Studies examining universal prevention are hardly feasible, as the number of subjects required amounts to tens of thousands at least. Research examining selective prevention is more feasible, but the number of subjects needed for these studies is still very high. Studies of indicated prevention are possible. Three major studies of indicated prevention examining the effects on the incidence of new cases of mental disorders are described."

    The National Eating Disorders Collaboration bulletin which was used to support "there have been no studies to prove primary prevention for eating disorders is effective or even possible" is incorrect. Not only does it provide several sources to the contrary, but two provided were researched and published in Australia, one in collaboration with The Butterfly Foundation. Namely, Baily, AP et al. (another meta-analysis) reported information was scant and needed more research. Ergo, lack of research does not equal proof.

    The NEDC bulletin also cited Chin-A-Loy and Robinson from University of Western Australia who confirm the strong link between eating disorders and body image, a position IEDAction disagrees with.

    The Nine Truths of Eating Disorders released recently and confirmed by the preeminent advocacy groups (IEDAction included) was used to suggest, or more aptly discourage body image awareness campaigns. In fact, truth seven specifically, and I believe purposefully, places environment and genes together as "important roles in the development of eating disorders."

    Secondly, I began writing for Proud2Bme.org, the volunteer attache of the National Eating Disorder Association, whose one of several focuses is to promote healthy body image and critique our media environment. As NEDA proxies, surely we can say they have correct interpretations of current research.

    On a more personal note, we need to respect each other as caring, loving individuals who want fewer people to die each year from eating disorders.

    Lastly, I was hoping to sit this whole thing out. I thought Butterfly Foundation was doing a good thing for getting the word out and starting conversation and perhaps IEDAction was being a bit overzealous in their mission. Then I read the letter and the cited research (yeah, that part took a while). Finding inaccuracies and misinterpretations of the research author's intent I felt obligated to give my opinion, as well as facts. Be assured, it is with displeasure that I do so.


  2. Dear Adam,
    Thank your for your input and for your continuing interest in fighting for access to eating disorders services. Our interest as IEDAction and the five other groups representing over 10,000 affected people and their families is to ensure correct information about eating disorders and increased access to evidence based services. Butterfly Foundation in Australia is a leading eating disorder advocacy and service provider in Australia, receiving federal funds in addition to private funding. According to Butterfly Foundation itself the country has around 1M people with eating disorders (that’s 4.3 percent of the total population) and only 30% have access to services at all. (https://mhaustralia.org/general/investing-need-changing-australias-commitment-investment-eating-disorders). Butterfly is in an EXCELLENT position to influence change and thus we are confused by their investment in things like general population education around body image, which as we noted in our letter can actually undermine efforts to ensure eating disorders receive the attention they need as serious mental illnesses. We are really happy Butterfly has engaged with us on this issue and our expectation is for more collaborative work in future.

    In terms of your comments on our research review. The Cuijpers article is not a meta-analysis but a review of different levels of prevention (universal, selective and indicated- which are distinctively different types of prevention efforts) from a research and statistical point of view. Cuijpers uses examples of different mental illnesses to help readers understand prevention from a research and statistical point of view. There is an example of anorexia in the FULL text which discusses it from a universal prevention stand point to show how unfeasible this type of effort is with low incident diseases. The point of referencing the citation was to show that a universal prevention effort, which is what Butterfly Foundation and many other groups attempt (preventing ED in the general public via improving body image), is nearly impossible due to not being able to achieve an effect size. A review of the entire article may better help clarify this and help you to understand why effect size is so important; efficacy of universal prevention is next to impossible to prove with a low incident disorder. In short, effect size facilitates the interpretation of the substantive significance of results and without an estimate of the effect size one cannot meaningfully interpret results because you would not know if the variables are actually related, regardless of statistical significance.

    While you are correct in that lack of research does not equal proof, the studies thus far are mostly conflating disordered eating with eating disorders. There has been no sound research on universal prevention for eating disorders.

    In terms of reducing mortality – this would be the goal of any prevention efforts for any disease or disorder. Unfortunately we are not aware of any research to date showing a reduction in mortality attributed to prevention efforts.
    As we noted before our concern is the conflation of body image with eating disorders in the context of lack of access to evidence based services in Australia. Thanks again for your input and comments.
    Amy Cunningham/Julia Fuentes
    On behalf of IEDAction