Outcry over ‘terminal anorexia’ response letter prompts retraction

Joel Yager

The authors of a response to an article critiquing the use of the term “terminal anorexia” retracted their letter last month after receiving major backlash from researchers, healthcare providers, and people with eating disorders. 

Regardless of inequities in care, terminal anorexia nervosa exists: a response to Sharpe et. al,” which defended the use of the term, was published May 20 in the Journal of Eating Disorders

The letter was a response to “Inaccessibility of care and inequitable conceptions of suffering: a collective response to the construction of “terminal” anorexia nervosa,” an article published earlier in the month in the same journal by researchers with lived experiences of eating disorders. The article outlined methodological problems with the criteria for diagnosis of a “terminal eating disorder” put forward in “Terminal anorexia nervosa: three cases and proposed clinical characteristics,” a previous paper by two of the authors of the response letter. 

The response was retracted on July 17. Its retraction note reads: 

The authors have retracted this article following discussions with multiple stakeholders. The authors offer their deepest apologies for the distress and the unintended negative impact of this piece.

The original response is no longer available online but can be viewed on an archived version of the page. 

In an email to Retraction Watch, Joel Yager, the first author of the retracted response, said: 

We retracted the letter following conversations with involved and affected parties after we better understood how they were impacted by our language in this response letter. But please understand that we remain dedicated to continuing to help encourage compassionate and critical conversations about this patient population.  We stand by our advocacy for the rare yet highly deserving population of adults who cannot survive their anorexia nervosa and thus deserve the full and compassionate care that anyone with a terminal illness is due.

The response letter prompted immediate backlash online, with James Downs tweeting:

In an email to Retraction Watch, Downs, who is a psychological therapist, researcher, and a person with a longstanding eating disorder, wrote: 

Aside from some of the arguments made, the tone and personal nature of the response disturbed me the most. For instance, the insinuation that authors with lived experience of the subject are less aware of the realities of the deaths of patients with anorexia than clinicians and academics was highly condescending, I was particularly concerned that the response appeared to make a psychological interpretation of Sharpe et al.’s argument as a product of the “anorexic voice”, which felt to me like a misuse of clinical authority, publicly evoking the supposed-psychopathology those within a vulnerable population as a rhetorical device. 

Others also felt the letter did not address the main points of the article to which it was responding. Sam Sharpe, the first author of that article, wrote in an email to Retraction Watch: 

The publication by Yager et al. 2023 did not engage with the core components of our thesis and appeared to constitute an attempt to undermine the credibility of our team and other lived experience researchers that, without supporting evidence, likely doesn’t have a place in academic discussion.

Scout Silverstein, another author of the Sharpe et al. article, told Retraction Watch that they and the other authors of the article agree that there are rare situations in which anorexia is deadly, and that people in this situation deserve compassion:

Many of us agree that a fraction of people diagnosed with Anorexia Nervosa will experience a critical stage of illness that may lead to death, and that those people deserve death with dignity. Our concerns about the original paper by Gaudiani et al. are its methodological flaws, failure to account for systemic inequities, and its lack of foresight in understanding the implications of introducing this diagnostic criteria in this manner.

Although the authors offer an apology in the retraction notice, Marissa Adams, another author of the Sharpe et al. article, pointed to an article in The Guardian in which Jennifer Gaudiani, an author on both papers advocating for establishing criteria for “terminal anorexia,” said, “I know for a fact that this advocacy is correct and that these individuals deserve to be cared for compassionately at the end of their lives.”

The co-editors in chief of the journal, Phillipa Hay and Stephen Touyz, did not respond to an email from Retraction Watch. 

Selene Cary, publishing director of fully open access journals at Springer Nature, told us: 

This article was retracted at the request of the authors, after they raised concerns about potential unintended negative impacts of the correspondence following discussions with multiple stakeholders. We took the concerns raised very seriously and concluded that retraction and removal of the correspondence from the journal website was the most appropriate and responsible action to take.

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10 thoughts on “Outcry over ‘terminal anorexia’ response letter prompts retraction”

  1. I wonder if the response letter was really bad, or if its authors were simply “bullied” into retracting it, i.e., the Cancel Culture.

    1. Let me preface this by saying that: (a) I am not impressed by either side here; but (b) I am not an expert on the topic of eating disorders, although I do medical research.

      While the initial case report by Dr. Yager’s team may have been a viable one, I can see why many would raise ethical and other concerns about the use of the term, “terminal,” in this particular context, given that there ARE effective measures to address anorexia-induced malnutrition—although the psychological aspects of the disorder may remain unaddressed.

      At the same time, relying primarily on “lived experiences” to challenge the above is a less-than-compelling method of engaging in a dialogue that could have been productive in challenging the characterizations made by Dr. Yager’s team. The follow-up letter by Dr. Yager’s team essentially articulated that.

      So, unless there are things I don’t know about (e.g., factual errors in the follow-up letter), I feel a bit “icky” about this retraction, as I do believe it is more affect/emotion-driven than fact-based—although, again, I personally do not agree with the characterizations made by Dr. Yager’s team.

  2. There’s a subset of anorexia known as “orthorexia” — the people with that are very, very, very preoccupied with what they eat, how to eat it, etc. They can take umbrage whenever anyone else has an opinion about food/diet, as happened here.

    1. Are you suggesting without evidence that the former anorexic researchers are now “orthorexic” because they disagree with them methodology of a piece of research? What purpose does that serve other than to slander them without basis?

  3. A turd in this soup is MAID. In the U.S., you need to meet and clarify hospice diagnosis to get paid. One of these qualifications, no matter the ailment, is “6 months or less to live”. That can only be an estimate, because it can’t be quantified very well medically. It is not easy to estimate. Doctors try, and the hospice agencies, who make a per diem, pressure those doctors to try a little. . . ahem. . .harder. Enter MAID, which is an Americanized, polished, Zoom-meet version of the T-4 program. MAID will mission creep–it saves Canadian socialized medicine lots of cash at least. Which is why Hippocrates proscribed against it–he knew and witnessed the same eternal human behavior. AN is a terrible disease we do not know much about–as evidenced by the initial case reports. Allowing MAID into heretofore valid palliative care will allow doctors to reach for standardization and certainty, but they will need a liquor cabinet right next to their white-coat rack for the self-remedying that always follows straying from Hippocrates.

  4. Largely due to adverse childhood experience trauma, I ‘live’ with chronic anxiety and clinical depression, that are only partly treatable via medication.
    It’s an emotionally tumultuous daily existence; a continuous discomforting anticipation of ‘the other shoe dropping’ and simultaneously being scared of how badly I will deal with the upsetting event, which usually never transpires.
    The lasting emotional/psychological pain from such trauma is very formidable yet invisibly confined to inside the head. It is solitarily suffered, unlike an openly visible physical disability or condition, which tends to elicit sympathy/empathy from others.
    It can make every day a mental ordeal, unless the turmoil is treated with some form of self-medicating, which for me is prescription or alcohol.
    Many, if not most, obese people self-medicate through over-eating. I utilized that method during most of my pre-teen years, and even later in life [for a couple decades] after quitting my (ab)use of cannabis and alcohol.
    I hope not, but someday I might return to over-eating as means of no longer self-medicating via two glasses of wine every night.

    1. So sorry to hear that. Bulimia Nervosa is a very serious condition. Hope new treatments emerge for its treatment.

  5. “which felt to me like a misuse of clinical authority, publicly evoking the supposed-psychopathology those within a vulnerable population as a rhetorical device”

    For all I know using a term like “anorexia voice” may have well been inappropriate in context, but people with anorexia *nervosa* are experiencing psychopathology. It’s not something you can brush off as alternative values or alternative life experience or alternative culture. The psychopathology initiates the condition, but the physical decline exacerbates the psychological and cognitive disorders until the patient is trapped.

    It doesn’t mean that the patient was wrong when the whole fandango began–AN patients often turn to refusing food as a response to losing control over very important and intimate aspects of their life. *The reason it’s a disorder is that even if circumstances change, a person suffering from AN cannot consciously and voluntarily stop their anorexia.* This is also why the condition is so frequently fatal.

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