Change in medicine is never easy, especially when practitioners are asked to dispense with long-held beliefs about an illness. It is this challenge—of steering an entire community to collectively revise its understanding of reality—that philosopher Thomas Kuhn flagged in
his classic analysis of scientific revolutions. Kuhn described such an inevitably messy affair as a “paradigm shift.”
When emerging science diverges from past assumptions, it follows that the prevailing base of knowledge will need updating. In theory, this epistemological process seems straightforward. The problem arises in practice, as such updates often face implacable resistance from individual human beings and the institutions they control. Kuhn’s insight was to highlight the social psychology of scientific transitions. When people invest their professional credibility in a specific idea or approach that is later surpassed by advances in science, many will be frozen by the dread of looming personal obsolescence. While some succeed in gradually pivoting to the new reality, others respond with various acts of resistance, seeking to delay and disrupt the forces they feel are promoting the discomforting change. And even after the revolution has become inevitable, some practitioners cling to the old ways.
This tortuous process is currently on vivid display in the debate over the causes of prolonged illness after an acute viral infection—especially the conditions known as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), formerly called chronic fatigue syndrome, and long COVID—the popular name for what the National Institutes of Health (NIH) calls postacute sequalae of SARS-CoV-2—or PASC. The controversy revolves around whether these are largely caused by pathophysiological processes, or—as some in the medical establishment have asserted—by a combination of physical deconditioning and mental health issues, including anxiety, depression, post-traumatic stress disorder, and other conditions.
The outcome has serious implications for the provision of medical care to millions of patients, as well as for wider decision making about health policy. The latter includes whether it makes sense for the NIH to create a new institute or center to study post-infectious illness, as sociologist and
New York Times opinion columnist Zeynep Tufekci
recommended last year. Given that such complex conditions involve a range of medical specialties, a key advantage of a dedicated NIH division—as noted in
a recent commentary from the Century Foundation, a progressive think tank—would be to coordinate and integrate research across disciplinary silos.
Past Assumptions
Two years ago, we wrote
an essay for this space at a pivotal moment in the ME/CFS debate: during a consultation period between the recent release of
the draft of a new guideline for the illness from Britain’s National Institute for Health and Care Excellence (NICE) and publication of
the final version in October 2021. It was evident at the time that the proposed guideline, which replaced
a 2007 version, would be viewed in the context of the wave of long COVID cases that was then emerging from the coronavirus pandemic. We predicted that efforts to forge a new evidence-based framework for the treatment and management of ME/CFS would be met with ardent protest from those who had the most to lose from any paradigm shift—a prediction that has largely been borne out by subsequent events.
For decades before the advent of SARS-CoV-2, the prevailing approach to ME/CFS focused on two non-pharmacological treatments: a program of steadily increasing activity known as graded exercise therapy (GET) and a specialized form of cognitive behavior therapy (CBT). The treatments were based on the commonly accepted, although unproven, hypothesis that patients who present with symptoms of ME/CFS are exhibiting a disorder that is mainly psychological and behavioral in nature rather than the result of underlying pathophysiological disruptions...........................................
