Trial By Error: My Talk at Cambridge Last October on “Epidemiological Sleight-of-Hand: The Troubling Case of ‘Medically Unexplained Symptoms'”

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.

4 thoughts on “Trial By Error: My Talk at Cambridge Last October on “Epidemiological Sleight-of-Hand: The Troubling Case of ‘Medically Unexplained Symptoms'””

  1. There is unknown physiology and biochemistry at play here unrecognized in medicince. Please see the scientific papers of Prof Barry Ninham and Prof Brandon Reines

  2. One thing has been striking me ever since the “8 symptoms of Long Covid” that after complaints became “12 symptoms of Long Covid” is how such a simple idea for more easily identifying a disease can become the definition of a disease and corrupt the future. So often when I go back and read the original paper on a topic (like the Max HR is 220 – age one) I find out how immensely corrupted the modern understanding is compared to the original paper (spoiler 220- age is the average BUT none of the participant were actually on that line and the variance was really big and the study was too small and had poor control over fitness).

    This is also true of the Canadian and international criteria of ME/CFS. Patients regularly ask other patients if their other symptoms are common because all the official definitions fail to capture the immense list of co-morbidities and symptoms. While such a reduced definitions might be necessary to aid research the problem we can see its impacted quite problematically studies like DecodeME where it rejected large numbers of DNA from people who had comorbities then added them back in once it realised they actually weren’t that rare. These reduced definitions quickly become the definition of the disease and that is how its used. This seems to be true for other diseases like MS and then in medicine it becomes “a rare presentation” whereas that knowledge was there when the limited definition was produced but for simplification purposes it all got erased. This is when there isn’t intentional fraud at play! ME/CFS and MUS didn’t become Fatigue alone by accident but equally the Canadian criteria wasn’t an accident either, the CCC just deletes 4 less symptoms of >200.

  3. So much seemed bad and wrong about the construct of medically unexplained symptoms or ‘MUS’. Now, in the UK at least, healthcare appears to be shifting into the realm of FND/functional symptoms instead which, to my mind, is similarly bad and wrong and employs similarly flawed arguments (around high prevalence, low misdiagnosis rates, high cost burden, and risk of iatrogenic harm) to try to persuade doctors, hospital managers, healthcare commissioners and politicians that the FND/functional construct is valid, good for patients and can help reduce healthcare costs in an over-stretched NHS. I’m extremely concerned that patients are suffering already as hospital managers employ psych staff with the aim of reducing appointments, investigations and length of stay. Like for MUS, if patients aren’t followed up adequately and if patient complaints aren’t taken seriously then nobody will know any different. It will be assumed that the FND/functional construct is sound and a great way to save money. Could it be any more bad and wrong than to deny patients the investigations and care that they need on the basis of flawed evidence (such as inflated prevalence/cost figures, dodgy misdiagnosis rates, biased harm risk statements)? And what if the majority of those patients are women?

  4. Following on from my last comment, I suppose that UK ME sufferers, having suffered this type of medical neglect for a very long time, might think that there’s nothing new about the way that rhetoric/propaganda around MUS and FND/functional symptoms is influencing healthcare in the UK, apart from perhaps the risk that more patients will be neglected in a similar way to how they have been. Unfortunately, I fear that things have gone further than that now with healthcare managers and commissioners believing and taking on board what they’ve been told about the cost of MUS and FND (and that diverting patients with unexplained symptoms to psychotherapy and physiotherapy can cut costs) so that medical decision making is being taken out of doctors hands and is resting with hospital policy and this cost-cutting strategy. I strongly suspect that, at least in some UK hospitals, doctors are being prevented by hospital management from doing what they would want to do and from performing the investigations that they’d want to perform for their patients with unexplained symptoms and that what we will be faced with now is the death of objective doctor-led medicine across the board. I fear it will no longer be the case of trying to find a sympathetic NHS doctor who hasn’t been persuaded/brainwashed by the BPS rhetoric/propaganda, even though they’ve been few and far between for patients with ME. Rather, my concern is that the BPS mob has dangled the (rotten) health savings carrot too effectively and the monster has got a taste for it now.

    A major part of medicine is about doctors finding the correct diagnosis for their patients via investigation, knowledge and reasoning. If they’re blocked by hospitals managers from doing that across specialties – prevented from performing investigations that would inform further investigation, management and treatments – then vast swathes of UK patients will suffer as ME patients have. If and when the health of our nation collapses, (as seems to be happening to an extent already), those who dangled that health economics carrot should be held responsible for all the harm that dangling has caused. Perhaps it may come home to roost for them sooner than that, you never know.

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