By David Tuller, DrPH
In the late 1980s, the UK and international health establishments began promoting a recovery narrative regarding what was then called chronic fatigue syndrome. Recovery was attainable, they asserted, through interventions like cognitive behavior therapy and graded exercise therapy. This approach quickly became the standard of care, in the UK and elsewhere.
Patients believed this hopeful narrative. Many entered CBT and GET programs with enthusiasm, assured by their providers that these treatments were effective at restoring health. But the studies that touted this purported success, like the PACE trial, turned out to be full of unacceptable methodological and ethical flaws. CBT and GET clearly did not work as advertised.
This background on the longstanding hegemony of the recovery narrative in the ME/CFS field is entirely missing from a new publication called “The Recovery Report: What 75 YouTube Interviews Say About Recovery from Chronic Fatigue Syndrome and/or Related Illnesses.” That absence undermines one of the report’s core claims—that the medical establishment has a deep-rooted investment in presenting ME/CFS as an incurable biomedical disorder and is therefore seeking to squelch the message that recovery is possible through so-called “mind-body” approaches.
Given the history, accusing the medical establishment of being out to censor stories of recovery is laughable. The CBT/GET recovery narrative has dominated the medical landscape for more than three decades. It is true that a greater emphasis on biomedical research has emerged in recent years. But that has occurred with the collapse of the credibility of the longstanding promise that CBT and GET were curative treatments–a process most visibly highlighted with the 2021 publication of revised guidelines for ME/CFS by the UK’s National Institute for Health and Care Excellence.
The Recovery Report, which is self-published and has not undergone formal peer review, is part of a larger project called “Recovery is Possible.” The principal investigator is Sarah Cefai, a senior lecturer in gender and cultural studies in the School of Media, Communications and Cultural Studies at Goldsmiths, University of London. The full report is 189 pages long. It is accompanied by an executive summary and a separate “plain English Community Summary.”
The interviews analyzed in the report were conducted by mind-body advocate Raelan Agle for her YouTube channel. About two-thirds of the subjects reported full recovery; the rest reported significant improvement. Agle reports that she found her own way to health after years of illness, and now seeks to help others through disseminating recovery stories. Her site includes more than 300 accounts from people who describe having healed from ME/CFS, Long Covid, and related conditions, largely attributing the improvements to mind-body approaches.
Cefai believes that such testimonials are authoritative sources of evidence, despite–or perhaps because of–their subjective nature. She also believes they need to be considered in public health policy-making, even though they are unverified. As I understand it, more or less, to insist on the need for documenting the accuracy of diagnoses and claims of recovery would be misguided and would deprive patients of their voice. To request such evidence would be to medicalize an inherently holistic phenomenon and something something to undermine the authenticity of something something and whatever and so on.
A big problem with the argument is that recovery narratives are just that—narratives. They are stories people tell—to others and to themselves—about their “recovery,” whatever that word means to them. These accounts can be analyzed collectively as cultural and social and public health phenomena. That doesn’t mean they are free from bias or reflect what truly happened, for any number of reasons. For example, saying you feel better because you have retrained your amygdala, as some mind-body programs posit, does not mean you have retrained your amygdala. Listening to patients does not mean believing everything they say is literally true.
Cefai acknowledges that The Recovery Report might not measure up to “a certain vision of scientific legitimacy.” Luckily, she has addressed the likelihood of rejection by offering a preemptive accusation of establishment censorship:
“From the view of dominant culture, the findings of The Recovery Report—much like the voices of those who are recovered—may be listened to by no one. Given what participants say about the importance of the visibility of recovery to their eventual experience of it, the prospect of the findings of this study being suppressed to uphold the status quo is deeply troubling.”
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The Recovery Report’s analysis is fraught with basic problems.
About two-thirds of the 75 subjects reported that they were now working as practitioners of mind-body interventions—a factor leading to an unknown amount of bias, whether conscious or not. With so many respondents having a professional and financial stake in affirming the benefits of these approaches, the body of testimonials should be viewed with a huge dose of skepticism.
Instead, The Recovery Report flips this issue upside down, suggesting that what might appear to others as a classic conflict of interest is really an affirmation of the recovery project:
“[T]he majority of recovery interviews have been given by people with a substantial commitment to the project of recovery beyond reflecting on their own experience. Most participants had stopped working during their illness, and most did not return to the same line of work once regaining their health. Many people report that this is because they developed a passion for wanting to help others recover. This study identifies this as a theme for analysis—self-education and making the decision to help others for a living is central pillar of the recovery community.”
That’s one way to view this issue—but it is certainly not mine. Even putting that matter aside, this analysis of 75 recovery narratives proves nothing about anything outside the world of the 75 recovery narratives. The narratives cannot tell us what is happening with people whose narratives do not align with these ones. Those include the millions of people who have been diagnosed with ME/CFS and Long Covid and, unlike the lucky subjects of Cefai’s study, do not seem to have recovered.
In the “community summary” posted as part of the overall package, Cefai outlined these basic findings from the report: “It shows that recovery from CFS and related chronic illnesses is not a matter of chance but follows consistent patterns. Moving outside a medical framework, recognising that one can recover, developing self-determination in the face of adversity, gaining new mind-body knowledge and being supported and guided by others are all important turning points in narratives of recovery from CFS and related illnesses.”
The report further notes that “nearly everyone who recovered describes a turning point at which they started to believe that recovery was possible.” A similar point is highlighted multiple times.
Here’s what The Recovery Report does not mention: The experiences of those who report having gotten better are pretty much the same as those who report not having gotten better. The only difference is that some people got better—the kinds of people interviewed by Agle—and an unknown number of others have not.
The Recovery Report is saying, in essence, “Hey, these recovery narratives prove people can heal themselves if they do x, y and z.” That logic doesn’t wash, given that many, many people—millions?—have done x, y and z and remain sick. No one seriously denies that some people improve and recover. But dozens or even hundreds of anecdotal and self-reported accounts of recovery in the face of millions of cases of illness do not make a convincing scientific case.
Pretty much everyone I have interviewed with ME/CFS or any variation has told me they firmly believed they would recover, and—especially during the early years—experimented with all sorts of interventions they heard or read about, no matter how off-the-wall they sounded. After failed attempts at CBT and GET, many sought solutions “outside a medical framework” and developed “self-determination in the face of adversity.” Many even pursued “mind-body knowledge” and zealously engaged with mind-body programs.
They just didn’t get better. In many cases, they got worse. They do not need to be told again that they would get better if only they did x, y and z.
Treatments for medical conditions should be backed by medical evidence. The Recovery Report provides an interesting account of story-making around the variable construct of “recovery.” But it does not provide actionable information for developing clinical guidelines or public health policy.