By David Tuller, DrPH
It is a pleasure to read a pointed and effective smack-down of an ill-informed argument, especially when the argument is pushing the graded exercise therapy/cognitive behavior therapy (GET/CBT) paradigm for ME/CFS, Long Covid and related illnesses. That’s how I felt about the excellent rebuttal this week to a letter from some of the usual GET/CBT ideologues criticizing a study published last year in Nature Communications. That study reported a link between post-exertional malaise (PEM) and muscle abnormalities in people with Long Covid.
(I interviewed Rob Wüst, the study’s senior author, last year. He also discussed his work in a talk with Solve M.E., which supported the research.)
Among the signers of the critical letter were two of the lead PACE authors: Trudie Chalder, King’s College London’s methodologically and factually challenged professor of cognitive behavior therapy, and psychiatrist Michael Sharpe, an Oxford don and self-proclaimed scientific martyr. Another was Per Fink, the Danish psychiatrist under whose authority a young female ME patient was held against her and her family’s consent. And, not surprisingly, Paul Garner, an infectious diseases physician at the Liverpool School of Tropical Medicine, who claimed to have cured his Long Covid with his powerful and manly thoughts, also added his name.
Professor Garner promoted the letter on social media and parroted its bogus assertion that the participants with PEM in the Wüst study were “deconditioned,” among other unwarranted statements. As he and his colleagues write:
“Appelman and colleagues report on muscle damage following a maximal effort physical exercise test in patients with PEM with the COVID-19 condition, and these results are interpreted as showing that exercise damages the tissues of people with PEM and should therefore be avoided. However, we believe the data reported do not support this interpretation, as the patients were substantially deconditioned; the physical activity was extreme and biological changes would be expected in anyone; and there were no control patients with a post-COVID-19 condition without PEM.”
The “erroneous interpretation of these data,” Professor Garner and his colleagues fret, could lead patients to avoid activity out of fear of PEM and reject “rehabilitation strategies” that could purportedly help them. These rehabilitation strategies obviously include CBT, GET and the many various permutations thereof.
When authors include indisputably untrue factual claims in their writings, it is reasonable to wonder about the accuracy of their other assertions—especially when the misstatements appear to bolster whatever case they are making. In this instance, Professor Garner and buddies refer to a high-profile U.S. National Institutes of Health’s publication as “a recent study on chronic fatigue conditions, including ME/CFS.” The problem is that the study is explicitly not about “chronic fatigue conditions” in general, given that it is called “Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome.”
I suppose this could be a sloppy mistake, but that seems unlikely. I’m assuming it’s an intentional misrepresentation, or what is normally called a lie. It seems to be a very clumsy effort to boost the NIH study’s relevance to their argument, given that the Wüst study involves Long Covid and not specifically ME/CFS. But whether this untruth is an actual error or a lie, it serves to undermine the overall credibility of this group of malcontents.
So does another peculiar detail. In citing a controversial Cochrane review of exercise therapy for what was being called “CFS,” the letter references a 2017 version rather than the 2019 version that superseded it. The 2019 version included amendments that watered down the interpretation of the findings, highlighted the uncertainty of the evidence, and noted the lack of sufficient data about potential harms. For investigators to cite an outdated version that has been replaced just because it better suits their arguments is unacceptable.
The response from Dr Wüst and his colleagues was polite but firm:
“We refute that our findings are due to deconditioning, as Long COVID-related skeletal muscle differ fundamentally from those caused by deconditioning. We demonstrated significant physiological differences in Long COVID patients with post-exertional malaise (PEM) compared to healthy controls, even at matched physical activity levels. PEM encompasses a variety of symptoms and not only muscle soreness. Our study did not address the efficacy of exercise training, and we reject misinterpretations that all forms of exercise cause PEM.”
Their response calmly dismantles each plank of the critics’ position. They also suggest that some of the remarks are not only inaccurate but simply off-point and irrelevant to the published paper:
“Ranque et al. [the letter’s first author is Brigitte Ranque, a French physician] state that our ‘findings have been widely interpreted in the media as indicating that exercise in people with Long COVID causes muscle damage and implying that people with Long COVID should not exercise’, but simultaneously agree ‘that intense exercise, such as the one tested in the study, is not recommended’, albeit without providing argumentation. While we speculate that PEM could result in fear of exercising at intensities above the PEM threshold, this was not the focus of our research, and feel this critique does not pertain to our publication.”
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Disclosure: My academic position at the University of California, Berkeley, is largely supported by donations to the university via the campus crowdfunding platform from people with ME/CFS, Long Covid, and related disorders.