Paradigm Lost: Lessons For Long COVID-19 From A Changing Approach To Chronic Fatigue Syndrome

By Brian Hughes, Steven Lubet, David Tuller: For Complete Post, Click Here…

For decades, patients with chronic fatigue syndrome, the poorly understood illness also known as myalgic encephalomyelitis/chronic fatigue syndrome or ME/CFS, have experienced neglect from the medical establishment and dismissal from society at large. In recent months, however, the condition has gained remarkable visibility, since many survivors of COVID-19 are reporting the sort of profound exhaustion, cognitive impairment, orthostatic intolerance, recurrent relapses, and other medical complaints that characterize ME/CFS. The New York TimesThe Guardian, the BBC’s “Newsnight,” and other major news outlets have extensively covered the apparent overlap between ME/CFS and what has been dubbed Long COVID or, more formally, post-acute COVID-19 syndrome.

As with Long COVID, a large subset of ME/CFS patients reports that the condition began with an acute viral infection from which they never seemed to recover. Many remain severely impaired for years, even decades. Anthony Fauci, the country’s top infectious disease expert, has drawn attention to the similarities, observing that the pattern of Long COVID symptoms is “highly suggestive of myalgic encephalomyelitis and chronic fatigue syndrome.” It is still unknown what proportion of Long COVID patients will ultimately recover on their own. Despite the fact that periods of post-viral fatigue and other symptoms are actually quite common after a variety of acute infections, the phenomenon is surprisingly understudied.

Because Long COVID research is in its infancy, the current rehabilitation strategies being offered to patients are, understandably, often based on assumptions and theories drawing from analogous contexts rather than from specific insights into the new syndrome itself. Among the theories being debated is a notion that long dominated research and treatment in the field of ME/CFS—that patients’ persistent symptoms are driven by their “unhelpful cognitions.” In believing they have an ongoing disease, the theory posits, patients avoid exertion out of fear of getting worse, and thus engage in a counter-productive pattern of sedentary behaviour that renders them severely deconditioned. Therefore, the argument goes, patients merely need either a program of graded exercise therapy (GET) to help them regain physical strength or cognitive behavior therapy (CBT) to correct their false beliefs—or quite typically a combination of the two.

This therapeutic logic, deeply entrenched for decades, has lately been seriously challenged. In 2015, following an assessment of thousands of studies, a report from the Institute of Medicine (now the National Academy of Medicine) declared ME/CFS to be a complex physiological disease and called for research to focus on biological pathways, with no mention of “unhelpful cognitions” as a cause. More recently, the evidence base for the GET/CBT approach has faced high-profile critiques, including from the authors of this post, that have drawn attention to serious methodological flaws.

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