Trial By Error: New Medical Anthropology Book on Chronic Illness Triggers Controversy

By David Tuller, DrPH

While I was on medical leave for the last few weeks, the fascist regime’s brownshirts executed two people protesting the military occupation of Minneapolis. (It seems important to make that point before anything else.)

Of course, other stuff has been happening too. In the domain of common interest here, a new book, Invisible Illness: A History, from Hysteria to Long COVID, caused a bit of a stir. The author, Emily Mendenhall, is a medical anthropologist at Georgetown University in Washington, D.C. The Sick Times posted an excerpt from it and then, in the wake of patient objections, took it down. (I have written for and donated to The Sick Times, but I have no editorial role and no insight into the publication’s editorial decision-making.)

Much of the debate over the book revolves around whether Mendenhall does or does not suggest that ME/CFS, Long COVID and related conditions are psychologically driven, at least in part, and whether she does or does not endorse cognitive behavior therapy as a beneficial treatment. Mendenhall offered her views of the matter in Bluesky Blowup, a recent post on her blog, Long Covid: An Anthropological Perspective, in which she writes that she views the conditions as pathophysiological in nature and reaffirms strong criticisms of the PACE trial. 

I haven’t read the book yet so am not going to comment on its overall content. However, I appreciated this balanced perspective from Dr Elke Hausmann, a British general practitioner who is currently not working because of Long COVID. Dr Hausmann’s essay ran as a guest post on the site of a blog called Long Covid Advocacy. Like Dr Hausmann, the site authors have themselves engaged in respectful but sharp critiques of Invisible Illness.

I will say that I do not find the construct of “bodymind”—frequently invoked by Mendenhall—to be helpful in assessing whether studies of behavioral and psychological interventions are robust or fraught with methodological and ethical flaws. But I understand that medical anthropologists communicate in such terms, for better or worse. 

Mendenhall and I spoke at length on Zoom back when—a couple of years ago at this point, I guess. We had a wide-ranging discussion. Afterwards, she sent me a draft of the short section of the book in which she was quoting me and referencing my critiques of the PACE trial. I offered some comments and suggestions and made some minor tweaks and clarifications. This is standard practice in academic research. After that, Mendenhall had to bug me a few times before I got around to signing and returning a release form. (Sorry for the delays!!)

In her Bluesky Blowup post, Mendenhall first discusses the fallout from the situation involving The Sick Times and the charges that led the publication to remove the excerpt. (I have written for and donated to The Sick Times, but I have no insight into its editorial decision-making.) The second part of the post describes how Professir Sir Simon Wessely threw a fit when she tried to publish a journal article about the history of the longstanding biopsychosocial paradigm, touching on such issues as the Lake Tahoe outbreak in the mid-1980s, the role of Sir Simon and others in the development of “chronic fatigue syndrome” as a clinical entity, and my critiques of the PACE trial. 

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Legal threats from Sir Simon, per Mendenhall’s account

Here’s the section from Mendenhall’s blog post:

“The article I put together wove together the origins of the CFS diagnostic with the medical misogyny of the PACE Trials that I describe in chapter 2 of Invisible Illness and described how the PACE Trials were debunked. I very clearly called out Simon Wessely in the article. [There are no “PACE Trials”–just one PACE trial that spawned way too many awful papers.]

“The article was submitted and a lovely (but very junior) editor handled the article and sent it to Wessely himself. I received a 17 page retort from him where he self-identified himself as the reviewer. I must note that I never personally reached out to him in part because he was such a contentious actor throughout my patient interviews and I felt he had very extensively published his viewpoints in his own words already. However, I did interview some of his close colleagues and friends. Much of what I cited about him was based on his own words and things written about what happened in the 1990s and early 2000s. Some of the critiques, however, we from extensive discussions with ME activists.

“While one reviewer loved the piece and suggested publication, the other one (Wessely) did not. He demanded it be rejected and threatened to sue the journal for defamation. Instead, the journal said I could address his comments and they would not send the article back to him (although, they’d already been in contact with their legal department). I found his feedback very interesting in part because he wrote so freely, emotionally, and extensively. I spent a great deal of time responding to his 17 page critique and very thoughtfully addressed his comments. In my revised draft, I added more of Tuller’s critiques of the PACE Trials themselves (that were in the book but not the journal article), while also managing his perspective about what the PACE Trial researchers found, revised, and did in a way that I found was appropriate.

“Unfortunately, a new editor sent it back to Wessely. While a separate new reviewer argued that his response to the first draft was itself an interesting cultural artifact in itself, and provided constructive criticism for final edits, Wessely got even more upset. It was at that point that I spoke with my lawyer, publisher, and trusted colleagues and decided to withdraw the article from the journal. I think the journal editors had been concerned about the threats and were relieved I pulled it. However, at the same time, this was moments before the book went to press. I felt threatened and concerned that the book would be compromised so, after discussion with my editor, I pulled my most pointed critiques of his research as well as the media around the PACE Trials from the book. I still do feel the book provides an important story, and that the PACE Trials are well represented, even though my most pointed critiques were removed.”

I feel a certain guilty pleasure that, according to this account, inclusion of more of my PACE criticisms appears to have pissed off Sir Simon even more. Sir Simon, of course, has defended PACE and related research in multiple venues. These efforts are always pompous, self-serving, and poorly argued–marred by Trumpian logic. Like the PACE authors themselves, Sir Simon ignores the trial’s documented violations of methodological and ethical standards–like the bizarre fact that the investigators’ decision to weaken their outcome measures meant that participants could be simultaneously “disabled” and “recovered” on the two main variables of self-reported physical function and fatigue. From what I’ve seen, Sir Simon’s erudite-sounding but vapid and bogus responses are easily rebuttable. I assume his reviews of Mendenhall’s article would have been the same.

Overall, Mendenhall’s account is clearly disturbing. It must have been very difficult and upsetting to be subjected to the behavior described in the post; I am familiar with the sorts of scary legal noises these people are used to making. (To be clear, Sir Simon has not presented his side of this specific exchange.) But Mendenhall has acknowledged that the book—or at least Chapter 2, called The Case of Chronic Fatigue—does not fully represent her academic views, and it is natural for readers to wonder what changes were made as a result of Sir Simon’s reported bullying and threats. What negative information was removed? Was anything added to support Sir Simon’s claims? Is what appears in the text trustworthy, even if it is not the whole story? In these circumstances, it is hard to know. 

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Passages that appear to support the PACE trial paradigm

The draft section Mendenhall sent me about the PACE trial and my role in discrediting it does differ somewhat from the published version. Some short sections appear in the draft but not in the book. In those chunks, was I critical of PACE? Absolutely. But everything I said in our conversations was critical of PACE. Does the chapter still make it clear that I think PACE is a piece of crap, even though it doesn’t include that specific phrase? Absolutely. So no complaints from me on that front. I would have written it differently and highlighted some different aspects, but Mendenhall offered a fair representation of what we’d discussed.

However, the chapter does includes at least two passages that appear designed to promote the biopsychosocial perspective, or at least mollify those who hold those views. These passages should never have been included without appropriate rebuttal.

For example, in one place Mendenhall reports that CBT “has been shown to be moderately effective in reducing symptoms and disability in CFS.” The same paragraph also notes that “CBT remains a moderately effective management strategy for CFS.” These statements are false.

Whatever Sir Simon, Professor Michael Sharpe, and their comrades in the biopsychosocial ideological brigades like to assert, there is no legitimate evidence that CBT is “moderately effective” in treating CFS or ME or ME/CFS or any variant thereof. Of course CBT helps people cope–that’s the point. [A reader has challenged the accuracy of the claim that “CBT helps people.”] But on a population level, according to PACE and related studies, it doesn’t work. Any reports of benefits on subjective outcomes are well within the range of results that would be expected from the bias inherent in the ways the research was designed. As the UK’s National Institute for Health and Care Excellence determined in 2021, the quality of evidence for this use of CBT ranges from “very low” to “low.” 

The PACE section also includes the following as a pushback against my criticisms: “Yet, in a formal review of regulatory concerns of the PACE Trial, the UK Medical Research Council and Health Research Authority of the National Health Service determined that the trial was robust, thereby rejecting the critics. This is one reason The Lancet has not redacted the paper.”

It is true that the Health Research Authority (HRA) conducted a review. (I don’t think the Medical Research Council, the main PACE funder, was involved in the HRA’s review, although I could be wrong.) But Invisible Illness presents this fact without the context needed to understand that there is much less here than meets the eye. The HRA investigation was essentially a whitewash. It was very limited in scope, examining mainly whether the PACE team technically followed various required steps like seeking oversight committee permission for changes from the protocol, and so on. The HRA did not examine whether any of the changes or other decisions were reasonable or well-advised or constituted serious violations of scientific principles—only at whether the decisions were approved by relevant trial oversight committees. Since the committees included multiple colleagues and supporters of the PACE team, they were hardly independent assessors.

In addition, the HRA only examined the 2011 paper in The Lancet, which included the manipulated main results, not the 2013 paper in Psychological Medicine on “recovery.” For the latter, the PACE team received no trial committee approvals for the dramatic weakening of all four measures of recovery. Had the HRA looked into this paper as well, they would undoubtedly have had to arrive at a different conclusion. The HRA’s inadequate findings have since been cited frequently as Mendenhall has cited them here—to counter the well-founded concerns that the PACE trial was fraudulent.

These are serious lapses. They give Wessely, Sharpe and their cronies an escape-hatch that they don’t deserve. Had I seen these paragraphs beforehand, I certainly would have alerted Mendenhall that they were not accurate and needed to be changed. As it is, based on what Mendenhall herself has revealed, readers will understandably be left with major unresolved questions and concerns about what she has written—in Chapter 2, at least.