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Nearly 70,000 people last year reached out to a helpline operated by the National Eating Disorders Association. Those numbers had more than doubled during the COVID emergency, and they still haven't returned to pre-pandemic levels. But now the association is shutting down that helpline in favor of a chatbot. Kate Wells with Michigan Radio has more.
KATE WELLS, BYLINE: The pandemic was this perfect storm for eating disorders. Hospitalizations and ER visits doubled. Helpline volunteers Katy Meta, Nicole Rivers and Keiko Fox say people were isolated; they were stressed; they were cut off from support.
KATY META: I think this was an 11-year-old that their parents - you know, they told them that they were struggling. And the parents said that they didn't believe in eating disorders.
KEIKO FOX: A woman who was, I believe, like, 67 years old and just kind of battling it by herself.
NICOLE RIVERS: An 11-year-old girl from Greece who thought that she might have an eating disorder, and she was really scared to tell her parents.
META: It was difficult because this individual was also suicidal.
RIVERS: We were actually able to encourage her that this is not something that is her fault.
FOX: I was able to set her up with some treatment options and, you know, talk her into believing that this is real and this is important.
META: And these individuals come on multiple times because that's all they have, is the chat line.
WELLS: Many of these helpline volunteers and staff get into this work because they have recovered from eating disorders themselves. Staffer Abbie Harper says that is part of why the helpline is so powerful. These are people with shared experiences.
ABBIE HARPER: When you know what it's been like for you and you know that feeling, you can connect with others.
WELLS: During COVID, the types of calls, texts and messages that the helpline got started to change.
HARPER: Kind of more crisis-type calls with suicide, self-harm and then, like, child abuse or child neglect.
WELLS: The helpline is run by just six paid staffers, a couple supervisors, and they train and oversee up to 200 volunteers at any given time. The staff felt overwhelmed, under supported, burned out. There was a ton of turnover, so the helpline staff voted to unionize.
HARPER: So cliche, but, like, we did not have our oxygen masks on, and we are putting on everyone else's oxygen mask. And it was just, like, becoming unsustainable.
WELLS: Managers at the National Eating Disorders Association, or NEDA, also thought that the situation was becoming unsustainable. Lauren Smolar is a VP at the nonprofit, and she says the increase in crisis calls also meant more legal liability.
LAUREN SMOLAR: Our volunteers are volunteers. They're not professionals. They don't have crisis training. And we really can't accept that kind of responsibility. We really need them to go to those services who are appropriate.
WELLS: The increased demand also meant that waitlists were getting longer, too.
SMOLAR: And that's, frankly, unacceptable in 2023 for people to have to wait a week or more to receive the information that they need, the specialized treatment options that they need.
WELLS: In March, the helpline staff formally notified NEDA about their unionization. Four days later, they were in what seemed like a pretty routine virtual staff meeting. NPR obtained audio of the call, and abruptly NEDA's board chair, Geoff Craddock, fired all the helpline staff.
(SOUNDBITE OF ARCHIVED RECORDING)
GEOFF CRADDOCK: We will, subject to the terms of our legal responsibilities, beginning to wind down the helpline as currently operating.
WELLS: After more than 20 years, the helpline was being shut down. Instead, Craddock said, NEDA would be transitioning to a chatbot named Tessa.
(SOUNDBITE OF ARCHIVED RECORDING)
CRADDOCK: With a transition to Tessa, the AI-assisted technology expected around June 1. So we wanted to share this information with you.
WELLS: Now, NEDA says that it can't discuss employee matters, and staff and volunteers say that they worry there's no way a chatbot is going to be able to give people the kind of human empathy that comes from a human. And the people who made Tessa agree.
ELLEN FITZSIMMONS-CRAFT: I do think that we wrote her to attempt to be empathetic, but it is not, again, a human.
WELLS: This is Dr. Ellen Fitzsimmons-Craft. She's a professor of psychiatry at Washington University's medical school. NEDA paid her team to create Tessa a few years ago. And right now the chatbot can walk a user through a specific series of therapeutic techniques about something like body image.
FITZSIMMONS-CRAFT: It's not an open-ended tool for you to talk to and feel like you're just going to have access to kind of a listening ear, maybe like the helpline was.
WELLS: Tessa is not ChatGPT. She can't think for herself or go off the rails like that. She's programmed with only a limited number of possible responses. And Fitzsimmons-Craft and her team have done small studies showing that people who interact with Tessa actually do better than those who are just put on the waitlist.
FITZSIMMONS-CRAFT: It's really a tool in its current form that's going to help you learn and use some strategies to address your disordered eating and your body image.
WELLS: Professor Marzyeh Ghassemi studies machine learning and health at MIT, and she is skeptical about this chatbot idea. She worries that it could actually be damaging.
MARZYEH GHASSEMI: I think it's very alienating to have an interactive system present you with irrelevant or what can feel like tangential information.
WELLS: What the research shows people actually want, she says, is for their vulnerability to be met with understanding.
GHASSEMI: If I'm disclosing to you that I have an eating disorder; I'm not sure how I can get through lunch tomorrow, I don't think most of the people who would be disclosing that would want to get a generic link. Click here for tips on how to rethink food.
WELLS: Often, the people who come to the NEDA helpline have never talked about their eating disorder before. Helpline staffer Abbie Harper says that is why people often ask the volunteers and the staff, are you a real person, or are you a robot?
HARPER: And no one's like, oh, shoot. You're a person. Well, bye. It's not the same. And there's something very special about being able to share that kind of lived experience with another person.
WELLS: NEDA is winding down the helpline this month and is no longer taking new calls or messages. The transition to the chatbot Tessa is scheduled for June.
For NPR News, I'm Kate Wells.
(SOUNDBITE OF INSTUPENDO'S "COMFORT CHAIN") Transcript provided by NPR, Copyright NPR.
