By David Tuller, DrPH
I gave a talk at Cambridge University last October called “Epidemiological Sleight-of-Hand: The Troubling Case of ‘Medically Unexplained Symptoms.’” More accurately, I gave the same talk on two successive days—October 18th and 19th–because of video malfunctions on the first day. I thought I’d written a post about it, but when I searched recently, I couldn’t find one. So here it is, belatedly.
I was invited to Cambridge by Freya Jephcott, an epidemiologist and medical anthropologist who runs a project called Hidden Epidemics at the Centre for the Study of Existential Risk (CSER). (I hadn’t heard of it, either.) CSER describes itself as “an interdisciplinary research centre within the University of Cambridge dedicated to the study and mitigation of existential risks.” Judging from its website, there seem to be a lot of existential risks to worry about at the moment.
Dr Jephcott’s project focuses on how epidemiology can be used—or, more accurately, abused–to obscure essential realities. A telling example is how early case definitions of AIDS excluded traits of the illness that were more characteristic in women, a situation that led to under-diagnosis and poor access to appropriate care. Dr Jephcott is also an expert in the assessment and management of disease outbreaks in low-resource settings.
My talk was supposed to be open to the public. However, rates of COVID-19 were rising in the area last October, so we went virtual instead. That was the right decision. But engaging with an in-person audience is always more, well, engaging than talking into a camera and responding to faces on a screen, so it was a bit of a disappointment. Nevertheless, I really enjoyed giving the talk—or both talks, I guess.
The phrase “medically unexplained symptoms,” or MUS, was favored by years by the CBT/GET ideological brigades and their fellow travelers to describe presentations for which the pathophysiological etiology was unknown. It seems more recently to have lost ground to the term “functional,” which as far as I can tell means essentially the same thing. “Psychosomatic” and “psychogenic” also describe the same group or groups of patients, but these words similarly appear to be less popular among experts in the field than in the past. During much of the 20th century and into this one, many or most of these types of cases would have been identified as “hysteria” or “conversion disorder.”
Whatever these conditions are called, it has been my observation that investigators who focus on psycho-behavioral treatments for them routinely adopt highly problematic and sometimes even fraudulent practices in their clinical trials and epidemiological research. My talk at Cambridge was an effort to categorize some of these practices and provide key examples of each. The flaws I discuss generally lead to results that distort and misrepresent the true nature of what is happening with patients.
In other words, treatment recommendations or clinical guidelines should definitely not be based on the reported findings from these studies. Their best use is as pedagogical tools on how not to conduct research. In fact, my epidemiology colleagues at Berkeley have found the discredited PACE trial—in which participants could be seriously disabled and “recovered” on key variables simultaneously–to be an extremely effective teaching aid in graduate seminars.
(Originally posted on Virology Blog.)