Thursday, November 20, 2014

Amy Explains Our Position

Just a little update on the issue with the Philadelphia Inquirer Sam Menaged of Renfrew profile/interview,  and also a bit of my opinion. Unfortunately, we have not heard back from Mr. Menaged at Renfrew. I sent him a formal email last week Friday from the IEDAction admins with our concerns and also noting that we had heard through third parties that he was misrepresented and we wanted to also help them get it right. 

This was before the letter to editor was printed. It's hard to know what people are thinking or doing unless you hear directly from them - so getting messages from third parties isn't really helpful and it also sends a message that our concerns aren't important. Given the size, resources and status of Renfrew I hope that they will take us seriously. The letter went out as the 200+ members if IEDAction with about 50 signatures of the most keen members.

Now my opinion: I do get the sense that advocacy around the nobodies or the non-ED groups like VS, Gap, Abercrombie, Freelee etc. is seen as okay even though it is also a bit marginal to our main goals of developing cohesive eating disorder treatment systems, but advocacy that asks the long-term and sometimes pioneering ED groups to look more critically at how and what they do is seen as subversive. It shouldn't be.

I hope that Renfrew isn't blowing us off and is interested in dialogue. I hope that all our groups are self critical and also open. We have to keep asking and questioning. There is some talk here and there since we started IED action and also other subsequently groups coming up (MAED A & A, glammonitor, etc) that we all have to work together and be on the same page. I think that is a bit simplistic for where we are right now - there is disagreement or lack of agreement on what to work on, there is discomfort with different advocacy approaches, there are undercurrents with lots of back chatter.

This all might be good stuff if it keeps the agenda moving ahead. I also am aware that lots of work has been done and there are lots of good people who have done it. But I ask that the old guard recognize that the new guard is coming up fast and strong and just like you we want change and are willing to invest in that. But our experiences are different. And the tools we have are different. And we might disagree with each other and the more established players. 

The really cool and wonderful happening is that with social media we are able to engage people as never before. They come on board because the action resonates with them. They stay on board because there is a place now for them to have a voice (all of these groups) and those impacted by ED can sometimes for the first time be heard and also use their experiences to impact policy. So while I realize that some of our actions make people uncomfortable, our intention is to continue to insist on correct and responsible information in the media and from ED 'experts' of all types, and to engage with groups to help get effective, accessible, evidence-based systems in place for early diagnosis and treatment and working with any and everyone we can get to pay attention. 

How we get there is not clear but that is the vision at least from my side and I hope we can solidify that in partnership with F.E.A.S.T.http://letsfeast.feast-ed.org/and others.

Philadelphia Inquirer Letter to the Editor re: Sam Menaged Interview

Understanding complexity of eating disorders 
An interview with Renfrew Center founder Samuel E. Menaged did a disservice to efforts to raise eating-disorder awareness ("Helping women who hurt themselves," Nov. 10). While it's positive to bring awareness to these deadly disorders - which have the highest mortality rate of any mental illness - the article focuses on sexual abuse, low self-esteem, and traumatic events as causes of eating disorders. While these can make it difficult for a person to recover from an eating disorder, there are no studies that show these factors cause eating disorders. What was most concerning was that there was no mention of biology and genetics, which current research points to as an underlying factor for many patients with eating disorders.
Outdated information with no empirical basis makes eating disorders seem as if they are diseases of choice and not the serious, life-threatening, brain-based illnesses they are. This can prevent lifesaving early diagnosis and intervention. It perpetuates a view of eating disorders that is faulty and dangerous.
International Eating Disorder Action (iedaction.global@gmail.com) - of which I am a member - includes activists whose lives have been touched by eating disorders, either personally, professionally, or through a family member. We are trying to combat pervasive misconceptions society has about eating disorders that negatively affect access to evidence-based treatment and insurers' willingness to pay for treatment.
|Faith Yesner, Media

Friday, November 14, 2014

Pushing Back on Outdated Information: Target--The Philadelphia Inquirer

Recently a piece ran in the Philadelphia Inquirer that was distressing. The piece is an interview with Sam Menaged, founder of Renfrew; much of what he said was taken out of context and their are also things he said (if the quotes are correct), that are concerning. As IEDAction believes that popular opinion influences policy, we felt contacting the paper was in order, and have sent this letter, signed by many advocates, to the editor of the business section, as well as a shorter letter to the editorial page editor we are hoping will be published.

Dear Mr. Toolan,
The interview, “Helping Women Who Hurt Themselves” in print and "Helping Those with Eating Disorders" online, written by Jane M. Von Berg in the Philadelphia Inquirer (11/10/2014) in which she interviews Renfrew founder Samuel Menaged did a disservice to the cause of eating disorder awareness. While it is positive that the Philadelphia Inquirer is covering eating disorders and bringing awareness to these deadly disorders (with the highest mortality rate of any mental illness), it is concerning how over-generalized and outdated the information was.
The piece mentions sexual abuse, low self-esteem and traumatic pasts as causes of eating disorders. While these circumstances can make it difficult for a person to recover from an eating disorder, there are no studies that show the factors stated cause eating disorders. What is most concerning is that there is no mention of biology and genetics in relation to development of an eating disorder. Perhaps this was covered in the interview and did not make the final edit.
Current research is showing that eating disorders have a biological underpinning and genetics account for up to 50-60% of the variability. A review published in issue 6 of 2014 Journal of Clinical Epidemiology  synthesizes some of the latest research regarding the biology and genetics of eating disorders.
Publishing incorrect and archaic information has far-reaching effects you may not have considered. Of those who read your paper, this may be the first time many are learning about eating disorders; this piece would provide them only with outdated theories for which there is no evidence. The tremendous danger of outdated information with no empirical basis is that it perpetuates society's misconceptions of eating disorders. It makes eating disorders seem like they are diseases of choice and not the serious, life threatening brain-based illness that they are; this can prevent life-saving early diagnosis and intervention. It perpetuates a Lifetime TV view of eating disorders, which is faulty and dangerous.
The pervasive misconceptions society has about eating disorders negatively impact access to evidence-based treatment and willingness of insurers to pay for treatment. According to the Eating Disorders Coalition, only one out of ten people receive treatment for their eating disorder and 50% of insurance companies cover only hospital care to stabilize a patient with no additional follow up treatment. Like treatment, equitable funding for eating disorder research is impacted by these misconceptions. Eating disorder research is dramatically underfunded when compared to other conditions, especially when adjusted for number of people affected. Misconceptions may not be the only reason for underfunding of research, but they are certainly not helpful.
Please consider running a piece in your newspaper to correct the misinformation that was published in the interview mentioned above. Thank you for consideration of this matter and we look forward to a dialogue on how to turn this into an overall positive by sharing the dramatic new knowledge recent research has yielded.


International Eating Disorder Action

Jennifer Denise Taunton Ouelette, San Diego, CA
Amy Elizabeth Cunningham, Dar es Salaam, Tanzania
Evelyn Gurdin Cohen, Albany, NY
Louise Stoward,Tasmania, Australia
Lisa Springer, Cloverdale, CA                                    
Julia Fuentes, Tucson, AZ
Faith Kandel Yesner, Philadelphia, PA
Sandra Gotlieb Willett, Fredericksburg, VA
Lauren K Masseron, Baltmore, MD
Alyson Carroll Earnest, Carlsbad, CA
Kelly Eagan Ballard, Durango, CO
Suzannah Nelson, Peterborough, Ontario, Canada
Deb Schenck, Wichita, KS
Jen Haken, Blewbury, UK
Mary Beth Irwin,Ridgefield, CT
Veronica Luccioni, London, UK
Karen Berner, Tampa, FL
Anne Birckelbow, Linden, MI
Rob Smith, Camden County, NJ
Angela Thomason Webb
Bridget Whitlow
Sheryl Sitman, Israel 
Penny Lawrence, Merced, CA
Diane Koplar Vaccariello, Homosassa, Florida
Gabriele Pfister Matthewman, Godalming, Surrey, UK and Alexandria, VA
Fran Warkow, Kansas City, MO
Eve Musby, Glasgow, Scotland
Rhonda Nunnally Brownrigg, West Plains, MO
Mia Elena Lopez Cox, Santa Maria, CA
Carolyn Dower, Austin, TX
Kelli Allen Masri, Corpus Christi TX
Lisa Guimont, Orangeville, Ontario, Canada
Leslie Richmand, Plainsboro, NJ
Sarah Hale Wilcher - Kansas CIty, MO
Melissa Sherman Francis, Middletown, RI