Eating Disorders Support ChatBot Promotes Weight Loss

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Recently I was made aware of something that was happening with the National Eating Disorders Association (NEDA) helpline. For the past twenty years, NEDA has run a helpline providing support to tens of thousands of people a year via text, chat, and phone. That helpline was recently replaced with an AI-driven chatbot.

Investigating this I learned that it happened around a labor action. As Vice reported, sourcing Abbie Harper’s piece on LaborNotes, a group of four paid helpline staff, including Harper, decided to unionize because “they felt overwhelmed and understaffed.”

Harper explains:

“We asked for adequate staffing and ongoing training to keep up with our changing and growing Helpline, and opportunities for promotion to grow within NEDA. We didn’t even ask for more money. When NEDA refused, we filed for an election with the National Labor Relations Board and won on March 17. Then, four days after our election results were certified, all four of us were told we were being let go and replaced by a chatbot.”

For their part, NEDA claims that this was a “long-anticipated change” which, if true, means that for a long time NEDA thought it was a good idea to replace six paid staffers, supervisors, and up to 200 volunteers supporting people whose lives and health can be in serious peril, with an AI chatbot. I think that would have been an astonishingly bad idea even if this wasn’t about union-busting.

But it gets worse. Before I get into it, a bit of background. The National Eating Disorders Association (NEDA) has a long history of either ignoring higher-weight people (as well as others with marginalized identities) or treating us poorly. (NEDA tends to focus their attention on thin, white, cis girls and young women to the exclusion of others.) For a brief time, they brought on Chevese Turner, founder of the Binge Eating Disorder Association, and it looked like they might be turning things around in terms of intersectional work. During this time I was asked to become an official ambassador. Then Chevese was summarily fired without explanation, and I publicly left the organization. Since then, NEDA has faced a significant amount of controversy for their actions around higher-weight people. Recently they were one of the only eating disorders organizations that failed to clearly denounce the disastrous American Academy of Pediatrics Guidelines for higher-weight youth.

I’m writing about this here because NEDA has significant funding (we’ll get to that in a moment) spending, per their 2021 filing, over $800,000 a year on digital and social media support, and they have a tendency to delete or bury criticism, so it’s easy to be unaware of this.

Activist Sharon Maxwell decided to test the bot. Her experiences were chilling to anyone who is knowledgeable about the intersections of weight, health, and eating disorders. I have viewed the screenshots of the chat transcripts. Unfortunately, I cannot publish them here as NEDA’s terms and conditions to use the bot state that “Any unauthorized use of text or images may violate copyright laws, trademark laws, the laws of privacy and publicity, and applicable regulations and statutes.” While I think reprint here would likely fall under fair use, I’m not a lawyer and I want to be as cautious as possible.

In response to a question about how the chatbot (called “Tessa”) supports people with eating disorders, Tessa offered help with coping mechanisms, healthy eating, and a recommendation to seek professional support.

In response to the follow-up question asking for tips around healthy eating, the chatbot offered several options, some of which included terms like “limit” and “avoid”  which is far from a best practice for someone dealing with an eating disorder as it can reinforce (and even create) restrictive thoughts and behaviors.

Maxwell asked about eating the right foods to lose weight. This was a clear test for the bot. This question is a red flag under any guise, but when it is being asked by someone seeking support around eating disorders, it is a gigantic red flag, atop a tall pole, set ablaze and waving in a strong wind.

The chatbot failed the test, offering up a heaping helping of diet culture including recommending (to someone seeking help from the National Eating Disorders Association) tracking calories and making sure to eat less calories than you burn. Then the bot recommended pursuing weight loss in a healthy way (ProTip: this is not truly possible for anyone, and is especially not possible for people dealing with eating disorders.) The bot recommended consulting a healthcare professional or dietitian only if the user had questions or concerns about their diet or weight loss goals. 

When asked point blank if there are ways to engage in safe and healthy weight loss without engaging one’s eating disorder, the chatbot immediately answered yes.

That is a dangerous answer. There is a body of dubious research being created (by people with deep and concerning conflicts of interest) that is trying to say otherwise, but I would hope that even they would agree that a blanket “yes” to this question, being asked by someone contacting an eating disorders helpline, without information about the person’s current eating disorders diagnosis and symptoms has a massive potential for harm.

The chatbot then said, incorrectly, that making gradual changes to diet and activity are sustainable and healthy ways to lose weight. The research that exists disagrees, but it would seem the bot doesn’t know that and is handing out misinformation about weight loss to people who are, again, accessing an eating disorders help chat.

Sharon Maxwell created an Instagram post about her experience. and Sarah Chase, the Vice President of NEDA responded:

@sachaseinc: That is a flat out lie.

@heysharonmaxwell: @sachaseinc would you like the screenshots from the conversation?

@heysharonmaxwell Maybe you’re truly blinded to the harm your own company causes. But girly, I have the receipts.

@sachaseinc I’m open to being proven wrong. Please send the screenshots.

@sachaseinc Yes please send the screenshots - and if this is happening in the program having the screenshots will be essential to fixing it - and I’ll retract my previous comment.

Afterward, Chase briefly apologized, then deleted the entire exchange, but Maxwell had a screenshot of the conversation which she subsequently published in her Instagram stories.

Sarah Chase’s behavior here is abhorrent but, honestly, precisely what I have come to expect from NEDA leadership. She had the option of beginning the conversation by believing Sharon or at least saying something like “do you have screenshots so I can look into this?”

Instead, she led by calling Sharon Maxwell a liar and only when confronted with the existence of evidence did she become “open to being proven wrong” and willing to retract her blatantly false accusation. How magnanimous. So, because Sharon took screenshots, NEDA is now “investigating” this, but if she hadn’t they would have simply called her a liar and gone on about their day as planned. Yikes.

NEDA then posted to its Instagram account

It came to our attention last night that the current version of the Tessa Chatbot, running the Body Positive program, may have given information that was harmful and unrelated to the program.

We are investigating this immediately and have taken down that program until further notice for a complete investigation.

Thank you to the community members who brought this to our attention and shared their experiences.

“May have given”? They have the screenshots. While NEDA normally allows comments on their posts, they posted this with commenting turned off.

To sum up, we have an organization that bills itself as “the largest nonprofit organization dedicated to supporting individuals and families affected by eating disorders” that:

• Rapidly replaced their entire helpline staff (a helpline that received over 60,000 requests in 2021 according to their filings) with a chatbot just days after the helpline paid staff voted to unionize

• Responded to concerns about the dangerous things the chatbot was saying by publicly calling the person bringing the concern to light a liar

• Tried to erase the interaction when it turned out that it was the VP of the organization who was lying

To me, these are not the actions of a reputable, ethical, non-profit organization. Again, NEDA was also one of the very few eating disorders organizations that failed to clearly denounce the disastrous American Academy of Pediatrics Guidelines for higher-weight youth (which had multiple conflicts of interest with weight loss industry funding) so I dug around their funding a bit. NEDA’s 2021 Form 990  (the most recent I could find on record) showed the organization receiving $3,183,198 in grants and contributions and paid their leadership (including outsourced CEO and COO services) a total of $651,500. Their Schedule of Contributors fails to list their actual contributors and simply says “RESTRICTED.”

So there is no clear funding from the weight loss industry though, again, that may have been part of the “RESTRICTED” information, or changed between 2021 and now.  A bit more background here - my first interaction with NEDA was 12 years ago when I started a petition asking them to end their partnership with the deeply anti-fat, weight loss industry-funded “STOP Ob*sity Alliance”. I had communicated with NEDA directly, explaining why issuing a press release in concert with an avowed anti-ob*sity organization, telling the media to: "Focus on the concept that weight status and the importance of maintaining a healthy weight is not about appearance, but about health" was harmful and offering to talk to them and/or connect them with other resources, but they refused. So I started the petition and they ended the relationship. Especially given the amount of money that Novo Nordisk and their Astroturf groups are throwing around, I’m definitely concerned that NEDA has or will jump back into relationships with the weight loss industry, and I’ll continue to dig around on that.

In the meantime, higher-weight people face significant barriers to receiving care for eating disorders, many of which stem from weight stigma and the weight-loss paradigm in which we now live. We can now add an eating disorders chatbot doling out diet advice to that list of barriers.

You can sign onto the letter to boycott NEDA here

If you are looking for eating disorders help, or organizations to support, you might try:

ANAD
Body Reborn
FedUp Collective
International Federation of Eating Disorders Dietitians
MEDA
National Alliance for Eating Disorders
Nalgona Positivity Pride
Project Heal

Please feel free to add organizations that I missed (with my apologies!) in the comments.

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More research and resources:
https://haeshealthsheets.com/resources/

*Note on language: I use “fat” as a neutral descriptor as used by the fat activist community, I use “ob*se” and “overw*ight” to acknowledge that these are terms that were created to medicalize and pathologize fat bodies, with roots in racism and specifically anti-Blackness. Please read Sabrina Strings’ Fearing the Black Body – the Racial Origins of Fat Phobia and Da’Shaun Harrison’s Belly of the Beast: The Politics of Anti-Fatness as Anti-Blackness for more on this.