Today begins National Eating Disorders Awareness Week The theme is "Come As You Are. Hindsight is 20/20" It's part of NEDA's work to correct the eating disorders community's history of exclusion of people who aren't thin, white, cis-het younger women.
Unfortunately the Academy for Eating Disorders (AED), which describes itself as "a global professional association committed to leadership in eating disorders research, education, treatment, and prevention" did not get the memo. Their choice to post an article suggesting a restrictive diet for people with eating disorder symptoms is an excellent example of precisely what not to do, so I'm going to break this down.
Content Note: This post may be triggering to those dealing with disordered eating or eating disorders.
TL;DR - AED, an organization that claims to be a leader in eating disorders community promoted a study that included on 3 subjects and who conclusion suggests that food restriction behaviors that would be red flags for eating disorders in thin people should be prescribed to fat people, that celebrates adherence to food restriction and loss of body mass as positive outcomes in eating disorder patients, and touts a subject eating only once per day as a positive outcome. That's unconscionable.
Ok, let's get into it.
There is so much wrong with this situation that I'm finding it difficult to fit into a post that is any kind of reasonable length, so I'll just hit the highlights lowlights, with possible additional blog posts to come. If there's something you'd like me to write more about, please feel free to leave a comment.
It all started when they posted "research" on Facebook:
Let's start with some basics of the article they posted:The "study" sought to find the effects of a very low carbohydrate diet on fat people with binge eating symptoms. They literally prescribed diets to people with eating disorder symptoms.
Two of the researchers profit from selling low-carb diets - with one of them making it central to his practice as a so-called " ob*sity medicine specialist " He also has a spouse who owns a company that sells low carb food.
The study included a grand total of three (count 'em - 3,) participants. Each was given a slightly different intervention with different follow-up periods, with the longest being only 17 months (despite that research shows that most people gain back their weight within 2-5 years.) The official research methods term for this is "a hot mess."
One of the participants reported an outcome of "frequently eating only one meal per day." The paper's authors reported this as a positive result.
Now let's talk about how utterly, completely, howl-at-the-moon inappropriate it was for the Academy of Eating Disorders to share this article (especially without any critique)The authors justify their "research" by stating that "many patients with ob*sity and comorbid binge eating symptoms present with the desire to lose weight." As AED well knows, many patients with thinness and binge eating symptoms present with the desire to lose weight. Yet those desires to be thinner are not encouraged, nor are those thin people put on restrictive diets, because it is quite simply malpractice to prescribe food restriction to someone dealing with disordered eating or an eating disorder.
This is a perfect example of a concept that Deb Burgard, PhD, FAED first pointed out to me: "we prescribe to fat people what we diagnose and treat in thin people," and AED should know better. Trying to make people thinner is in direct opposition to any competent approach to eating disorder prevention, treatment, and recovery.
Chevese Underhill Turner, founder of the Binge Eating Disorder Association and author of Binge Eating Disorder: The Journey to Recovery and Beyond commented on the AED post (copied here with her permission)
This is just one of the many studies showing reduction of binge eating through restrictive eating. Noom (which a group of ED researchers consulted on) recently made a big deal about reduction of binge by those using the app.
News flash: BED is a restrictive eating disorder and binge eating in the course of other EDs is always paired with restriction or purging.
Those of us in higher weight bodies who binge(ed) are expert at extended dieting and restriction. These studies are asking participants to engage in the behaviors that are already part of their eating disorders and then reporting them as "evidence based treatment." Thus, more harm and less healing.
As an AED board member representing the Experts by Experience Portfolio/Committee, I am embarrassed this was posted on AED's social media. I am also sad for those participating in the study and the long term harm to which they were exposed. This is ethically irresponsible in our field IMO.
One of the three (3) case studies included in the article reported that "she frequently eats only one meal a day " While this should be a wildly obvious red flag in a subject with eating disorder behaviors, the thoroughly-steeped-in-and-profiting-from-fatphobia authors report it as if it's a positive outcome because "She stated she frequently eats only one meal a day without experiencing any significant hunger, nor feelings of deprivation, or desire for chocolate." You'll find the same claims on pro-anorexia sites - are these researchers and the AED endorsing that as well?
The conclusions also give the amount of weight lost (in the short term, they've conveniently skipped the long-term follow up that research shows would likely find all of three (3) participants having regained all their weight.) Celebrating weight loss in a study about eating disorders is so ludicrous that I almost can't believe I just had to type that.
The paper's authors actually state a conclusion that "Clinicians may wish to consider a low-carbohydrate, ketogenic diet for patients with [fatness] who report binge eating and food addiction symptoms, especially when other interventions have failed. " I don't think the inappropriateness of recommending an intervention based on three case studies with inconsistent interventions, one of whom is currently only eating once per day, can possibly be overstated. And the study authors may stand to profit if clinicians follow this advice. AndAED shared this with a quote from the study and not a single word of critique.
Weight Stigma is sadly rampant in eating disorders community, and so this is not the first time that a massively ill-advised study that puts fat people's health and lives in danger was undertaken by members of the eating disorders community, but the fact that AED simply posted it uncritically is unforgivable. Far too many people have done far too much work around the intersections of fatphobia and eating disorders for them to be out here promoting food restriction for fat people with eating disorders.
Finally, let's talk about AED's Unconvincingly Feeble Response(s)After their Facebook post received dozens of outraged comments from experts in the field (and no comments in support,) AED first tried to go with the tried and true "congratulating ourselves for just starting a dialog, folks " defense
The purpose of posts on our social media is to make people aware that research is happening. We have not stated support for this particular study, but feel it is important for people to have exactly this sort of discussion.
I have no trouble believing that AED is fully committed to weight stigma as a basis for eating disorder treatment, but I don't believe for a second that they think posting a study - completely uncritically and accompanied only by a quote directly from the study - is NOT the same as supporting it.
So to me this response says "We're fine harming fat people as long as it leads to an interesting discussion." It's a reminder that organizations that claim to lead in eating disorders are willing to harm fat people - including perpetuating eating disorders in fat people - because they are more committed to the eradication of fat people than to the prevention and treatment of eating disorders in fat people.
After more outraged comments, they threw this spaghetti on the wall:
AED Leader ship is considering the removal of this post from an AED member this morning. However we wanted to be very clear that we do not endorse the Research presented but felt that Aed Members should be aware of the initiative.
This response is not remotely good enough, and erasing the dangerous, harmful mistakes that AED made, and all the labor that was done to correct them, is not the answer.
Apology, acknowledgment of the labor was done on the thread, a clear statement of the mistakes that have been made, and a plan for how this will be avoided in the future would form the bare minimum of a good start to fixing this.
An organization that claims to be a leader in eating disorders community participated in the promotion of a study that suggests that behaviors that would be considered red flags for eating disorders in thin people should be prescribed to fat people, and that celebrates adherence to food restriction and an outcome of a patient eating only once per day. That's unconscionable.
AED has been given every opportunity to know better, and has no excuse for this harmful, oppressive behavior. This is nothing short of shameful.
When they continued to get negative feedback, they replaced the original text with this "official response"
Dear members, below you can find our official response to this most recent discussion.
--
The AED Social Media Committee would like to sincerely apologize for any harm caused by sharing this research article. We've read all your comments and appreciate your valuable feedback. Our committee is comprised of volunteers that dedicate their time and energy to serve our cause and although it is our goal to promote and disseminate high-quality research, it is not intended to cause harm to our members or anyone else. We want to emphasize that we do not support the statements made in this specific research article. As a committee, we take this situation seriously and will review our current policies and procedures in order to prevent this from happening again in the future.
They actually went with the "not intended to cause harm" line. Seriously? They tout their organization as a leader in eating disorders community, but want us to believe that they weren't aware that suggesting restrictive diets and weight loss to people with eating disorders is harmful? Ser- I say again -iously?
Are they saying that they think a study of three people given different interventions constitutes "high-quality research"? Because that's what it sounds like to me. And saying "we do not support the statements" isn't the same as saying "we want to assert that this research is inappropriate and dangerous."
I'm not going to be nice about this. I'm not going to calm down. I don't have time for them to dawdle on their way to reaching conclusions that are foregone because people are suffering and dying because of the fatphobic eating disorder treatment model that AED members promoted with this study - then doubled down on, and still have not truly apologized for. And it's not just this study - AED members have been involved in a number of weight-stigma based articles, journals, and conference presentations. It's time for them to draw a hard line against weight stigma in eating disorders preventions and treatment.
If they won't hold themselves accountable, we need to. Change needs to happen, and it needs to happen yesterday. When you have every opportunity to know better and do better but you don't, your actions become malicious.
Here's how you can get involved:
If you want to share your valuable feedback with AED, they deleted their post on Twitter, but you can find the Facebook post at:
https://www.facebook.com/AcademyforEatingDisorders/posts/10156525062721653
AED is online at:
https://www.aedweb.org/
[email protected]
If you want to share your valuable feedback with their sponsors/partners, per their website they include:
Timberline Knolls Residential Treatment Center [email protected]
Eating Recovery Center [email protected]
McLean Hospital [email protected]
The Center for Eating Disorders At Sheppard Pratt [email protected]
Veritas Collaborative [email protected]
McCallum Place Eating Disorder Center [email protected]
UCSD Eating Disorder Center for Treatment & Research [email protected]
Get involved in National Eating Disorders Awareness Week, you'll find everything from shareable graphics to panel discussions that you can watch.
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