An Open Letter to NEDA

UPDATE:  We did it!  After only a few days NEDA sent a letter saying “The National Eating Disorders Association (NEDA) does not have any ongoing partnership with George Washington University’s program, Strategies to Overcome and Prevent (STOP) Obesity Now Alliance.”  They have removed the STOP Obesity Alliance partnership from their website. You can read my full report our successes here.

Thanks to everyone who signed and everyone who passed the petition on.  Activism works!

Want to get involved?  Sign the petition to tell NEDA to STOP working with the STOP Obesity Alliance

Dear National Eating Disorders Association (NEDA),

As someone who has recovered from an eating disorder, and who has worked with people who are struggling with eating disorders, I have deep respect for your organization and the work you do.  I am writing you this open letter to express my concern about your partnership with the Strategies To Overcome and Prevent (STOP) Obesity Alliance.

In a May press release that you released in conjunction with STOP you stated that in dealing with weight the media should:

“Focus on the concept that weight status and the importance of maintaining a healthy weight is not about appearance, but about health”

Pathologizing body size by claiming that there is such thing as a “healthy weight” is highly problematic on multiple levels.  Use of the term “healthy weight” ignores the multi-dimensionality of health, and the fact that there are healthy obese people and unhealthy thin people. It sends a dangerous message to people of size that healthy habits are not enough unless they lead to weight loss, and to thin people that they are healthy regardless of their habits. Both of these statements are incorrect.

Obesity is defined by Body Mass Index – a statistical tool that was never meant to be an indicator of health. If your weight in pounds times 703 divided by your height in inches squared is greater than 35 you are considered obese.  That does not constitute a physical or mental health diagnosis.  The diagnostic tools that we have at our disposal mean that we can abandon the dangerous practice of using body size as a proxy for mental or physical health.

Since all of the other organizational partners listed on your website are eating disorder related, I am very concerned that the addition of the STOP Obesity Alliance to that list may give people the mistaken impression that obesity constitutes an eating disorder diagnosis.  Of course you are aware that ED is a mental illness that includes emotions, attitudes, and behaviors surrounding weight and food issues and not a body size, but I feel that your partnership with an organization that considers obesity to be a disease may make it unclear, and I believe that your use of “healthy weight” type languaging muddies those waters.

I’m also concerned that you are sending very conflicting messages. Your website says:

“No Weight Petition: Signing this declaration of independence from a weight-obsessed world may help you accept your body’s natural shape and size”

“Shut down those voices in your head that tell you your body is not “right”

“Become a critical viewer of social and media messages. Pay attention to images, slogans, or attitudes that make you feel bad about yourself or your body. Protest these messages: write a letter to the advertiser or talk back to the image or message.”

“Encouraging the media to present more diverse and real images of people with more positive messages about health and self-esteem may not eliminate eating disorders entirely, but it would help reduce the pressures many people feel to make their bodies conform to one ideal, and in the process, reduce feelings of body dissatisfaction and ultimately decrease the potential for eating disorders.”

“Your “ideal” body weight is the weight that allows you to feel strong and energetic and lets you lead a healthy, normal life.”

These messages seem to be in conflict with the suggestion that obese people should view their bodies as diseased based only upon their size and regardless of their health or how they feel.

My final concern is conflicts of interest.  The STOP Obesity Alliance is funded by:

  • Sanofi-Aventis:  a French pharmaceutical firm that manufactured the weight loss drug Rimonabant (aka Acomplia, Zimulti et al.). They refuted reports about the medicine’s psychiatric side effects until the European Medicines Agency issued a press release stating that the benefits no longer outweighed the risks for the drug based on data that patients had twice the risk of psychiatric disorders as a group on placebo. Approval of the drug was officially removed in January 2009 and they have, so far, failed to gain approval in the United States. They continue to pursue weight loss drug development.
  • Allergan:  This company manufactures and sells the lap band that is used in weight loss surgery, has sponsored a contest to give away a surgery whose possible complications include death, has consistently pushed to have the weight at which a lap band is approved lowered, and created an organization to urge “Congress to recognize obesity as a disease and support legislation to provide greater access to and acceptance of all effective treatments, including weight-loss surgery”.  In other words, creating a problem that they will then sell their product to solve.
  • Amlyn: a pharmaceutical company which, until August of this year, was seeking approval for the weight loss drug pramlintide/metreleptin.  Per Christian Weyer, M.D., Senior Vice President, Research and Development “With our partner, Takeda, we look forward to continuing to explore new options for the obesity market.” (Although they are listed as a source of funding on the May 2009 press release, they are no longer listed on the STOP website as a source of funding since they abandoned approval attempts for their diet drug.)

As Dr. Weyer points out, these companies look at obese people as a market for their product.  Obviously they stand to profit from a health paradigm that treats body size as a disease since no actual health issues will we be required for prescription of their products, and insurance companies may have more reimbursement requirements.  I’m concerned that you are partnering with a group that was founded and is funded by those who stand to profit from the pathologizing of a group of people based on their body size and regardless of their actual health.

People of size face tremendous stigma in our society – stigma that may already be negatively effecting our physical and mental health.  For that reason and those above I respectfully request that you reconsider your partnership with the STOP Obesity Alliance, and cease using all language that uses body size as a proxy for mental or physical health.  I would also implore you to take the utmost care to avoid stigmatizing or pathologizing obese people as part your work, and to instead endorse a Health at Every Size® Philosophy that puts focus on health rather than body size.

Sincerely,

Ragen Chastain
www.danceswithfat.org

Want to get involved?  Sign the petition to tell NEDA to STOP working with the STOP Obesity Alliance

Published in: on November 1, 2011 at 8:40 am  Comments (39)  

39 CommentsLeave a comment

  1. I would say you got your point across well. Let us know when they respond to you.

  2. Great letter, and I feel a bit contrite about having praised some of their more positive messages in the past. Mixed messages indeed!

  3. So very well written! You have eloquently let them know that they made a BIG mistake in partnering with that organization. Good for you!

  4. As usual, Ragen, nail meet hammer! Thank you for continuing to shine a light into the dark. For looking under the surface to expose truth. You’re kind of a superhero, y’know. Just sayin’.

    • Awww, thanks Tiina! I am “Type 3- super Obese” so that probably helps with the whole superhero thing🙂

      ~Ragen

      • A mask and a cape and you’re all set!🙂

        I’m in on a petition if you decide to do it!

      • Ha! I’ve just been reading your hate mail (LOVE that you monetized the bag of idiots) and found, “I’m so fat it should come with a mask and a secret identity!” Even in the thick of hate you are able to use humour (and your beautiful intelligence) to bring light and lightness into the darkness. I love you, Ragen Chastain!!!

  5. Amen!!!!

  6. Bravo! That was a wondererful letter/speech and I don’t see how they could not sit up and take notice and rethink their decision.

  7. So sick the back alley interactions allergan and the like will go to…

  8. Ragen, did you post this on their facebook page? This is perfectly put and articulates that muddy ground of eating disorders and size acceptance to a tee. Thanks!

  9. Brilliant letter and I hope they see it. I’ve included it on my FB page as well. =)

  10. Ragen,

    I wish I had words to express how grateful I am that there is such an eloquent, unwaivering advocate for Heath At Every Size. You’re hard work and dedication to this philosophy is inspiring and I thank you from the bottom of my heart for all your hard work.

  11. Great letter. I was a little conflicted with them when I heard that Jess Weiner was going to be a keynote speaker for them right after her article came out. I know Linda Bacon wrote on their facebook wall about it.

    • What the…I did not know that. That’s another open letter entirely😦 Jess’s story would be a little easier to believe if she hadn’t trademarked the name of her weight loss company (which can take months or years) BEFORE she came out with her ridiculous story that she thought that we all were telling her to love her body but not take care of it in any way. I’m going to stop ranting now. Sigh.

      ~Ragen

  12. Brava! You, as usual, rock.

  13. Thank you Ragen for educating us and educating NEDA. I do hope that they will listen and take heed. I agree with Dr. Deah that you have very clearly articulated this muddy area of eating disorders and size acceptance.

    Thank you for bravely addressing this issue as well as doing your homework on the background.
    Becky Henry
    Hope Network

  14. Wow… just wow.

    NEDA, just say NO FREAKING WAY to Allergan and it’s minions.

  15. I hope you did actually send this letter to them. If you haven’t yet, I would sign on in support of your points!

  16. Jen makes a good point. Can we start a petition based on this? I’ll help! Thanks!

    • I just googled “online petition” and it doesn’t seem to be that difficult. I’ll get on it tomorrow (unless you have a better idea which you very well may since I had to google “online petition”🙂 Let me know what you think!

      ~Ragen

      • You can make one through Change.org, super easy.

  17. Well done, Ragen. I’m in on any petition to this effect.

  18. Just to let you know, I signed the petition tonight. Lucky number seven! Woo and hoo!

  19. I also signed the petition. This alliance is blatantly at odds with NEDA’s stated goals. It’s a shame, as I’ve worked with NEDA in the past and they did a lot of good.

  20. Thank you for this brilliant article and petition.

  21. It was so nice to meet you at the America the Beautiful premiere on Friday. Thanks for taking the time to do all that you are doing, including this letter and petition.I hope that NEDA will listen. I can tell you that ADA does not, and it has made the organization look awful. I was once horrified to come back to my hotel room at an ADA convention to find a book promoting a specific diet drug in my room. It had been placed in the room of all ADA officers, regardless of position. I was the Chair of Behavioral Health Nutrition at the time (encompassing developmental disabilities, eating disorders, addictions and mental health) and I knew enough about ADA to expect some things at the convention that would irk me. But I didn’t think they would invade the sanctity of my hotel room with their propaganda! It was invasive enough to think that a stranger had been in my room – ick – but that when I actually opened to book (thinking that of course it had been written in conjunction with dietitians and would somehow prove all my horror to be misplaced) I read the words “You don’t need a dietitian to tell you which foods are good and bad for you….[you just need our drug].” There were so many things wrong with that one sentence alone! I tried to start a grassroots revolution, but sadly, most people just said “that’s the way it is.” There are so many battles to fight! You are an inspiring reminder that we need to keep at it. Thanks again.

    Jessica Setnick, MS, RD/LD, CSSD
    Making Food Your Friend Again!
    Author of The ADA Pocket Guide to Eating Disorders
    Director of Training and Education for Ranch 2300 Collegiate Eating Disorders Program
    CAMPUSPEAK Presenter

    • Hi Jessica,

      It was awesome to meet you as well! If I could eradicate any phrase from human vocabulary it might be “that’s just the way it is”. Thanks for all of the work that you do, we are making progress – however slow, however painful.

      ~Ragen

  22. I was hanging out at Marilyn Wann’s Tumblr, when I read this and thought, “What in the, this makes so much lack of sense, I cannot believe my own eyes.” Not even Super Mario tagging up with Bowser has been this unbelievable. It just boggles my mind, that the NEDA would sell out people with eating disorders like that.


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