I have a new essay up on Health Affairs (coauthored with David Tuller and Brian Hughes) about the entrenched medical community's resistance to new understandings of both ME/CFS and Long Covid. You can read it here (registration may be required).
Here is the gist:
Paradigm Lost: Lessons For Long COVID-19 From A Changing Approach To Chronic Fatigue Syndrome
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.”
Processes of change in medicine and other disciplines, during which the authority of die-hard practitioners is supplanted by new insights, are frequently referred to as “paradigm shifts,” in reference to Thomas Kuhn’s classic analysis of scientific revolutions. By the time the coronavirus pandemic arrived last year, a paradigm shift in the ME/CFS field was already well underway, with the psychogenic view having steadily lost ground in the debate.
Nonetheless, proponents of the long-standing paradigm have appeared undeterred. They have seized upon the comparisons between ME/CFS and the current reports of persistent post-viral symptoms to quickly push exercise and psychotherapy as go-to treatments for people experiencing Long COVID. A recent Wall Street Journal opinion piece, for example, presented Long COVID as essentially a mental illness—and cited deeply flawed ME/CFS research as evidence.
Any paradigm shift creates winners and losers. In Kuhnian terms, the losers are usually those who persist with a flawed model despite the emergence of empirical reasons to doubt it. The shifting of the ME/CFS paradigm significantly undercuts those prominent psychiatrists, psychologists, and other health professionals who chose to invest significant reputational capital, over multiple decades, in what is a now a collapsing theoretical construct. And so accordingly, we have entered the Kuhnian stage of crisis.
Contrary to models that posit an inevitability to scientific progress, paradigm shifts are never guaranteed to succeed. If researchers and clinicians fail to learn from the example of the ME/CFS controversy, and if proponents of the psychogenic theory simply refit their preferred paradigm to a different and fast-evolving context, then the growing cohort of post-COVID-19 “long haulers” could be the latest casualties of resistance to this long-overdue revolution.
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