Trial By Error: Some Thoughts on Long-Covid, ME/CFS and MUS

By David Tuller, DrPH

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Among the troubling phenomena to emerge from the pandemic are the reports from so many Covid-19 patients of a range of persistent non-specific symptoms, fatigue, dizziness, cognitive impairments, and on and on. Some people who got sick in the early days, back in March and April, have now been experiencing symptoms for six months or more, the length of time required in many (but not all) definitions of ME, CFS and their variants to render a diagnosis.

It is clear that there are overlaps between post-Covid symptoms and ME/CFS, but it is also clear there are differences. How and where those boundaries are drawn will have serious implications for diagnostic strategies and treatment protocols going forward. These issues have undergone robust debate in online ME/CFS and “long-Covid” communities. Now Time magazine has picked up the issue, recently posting a nuanced piece about the relationship between ME/CFS and “long-Covid.” Since #MEAction’s Jaime Seltzer was a key source for health reporter Jamie Ducharme, the presence of nuance was not at all surprising.

(Can “long-Covid” and “long-hauler” be used without ” ” at this point? I’m not sure. Copy-editors?).


MUS and post-Covid symptoms

Many post-Covid patients report that doctors have dismissed their complaints and/or attributed them to psychological problems like anxiety and depression. Of course, patients diagnosed with ME/CFS have experienced similar medical gaslighting for years. So have patients diagnosed with so-called €œmedically unexplained symptoms,€ also known as €œpersistent physical symptoms€ and related terms.

Although neutral on their face, these terms in fact function as psychiatric constructs. Those who believe in the robustness of these categories also maintain that the conditions are amenable to recovery through non-pharmacological interventions, usually involving some version of cognitive behavior therapy. These investigators define their approach as €œbiopsychosocial.€ Unfortunately, their interventions generally focus on the €œpsycho€ and €œsocial€ aspects at the expense of the €œbio.€

In the UK, members of the biopsychosocial ideological brigades, who have a tendency to over-interpret or otherwise misrepresent their research findings, have dominated this domain. These investigators helped engineer a successful effort to include patients with MUS in the metastasizing National Health Service program called Improving Access to Psychological Therapies. In IAPT, the MUS category includes chronic fatigue syndrome, irritable bowel syndrome and MUS not linked to a specific syndrome.

The PACE trial, whose first results were published in 2011 in The Lancet, was essentially a €œproof-of-concept€ study for the expansion of IAPT. The trial purported to prove that CBT and a behavioral approach, graded exercise therapy, could lead to recovery from ME/CFS. According to the unproven and delusional hypothesis, patients suffered solely from deconditioning and an unhelpful or dysfunctional conviction that they had an organic illness. To get better, they needed either CBT for some cognitive restructuring and/or GET to reverse the deconditioning. Per the hypothesis, full recovery was possible.  

The PACE claims have been discredited. A major re-analysis of the data documented that the reported findings were largely an artifact of the investigators’ decision to weaken all their outcome thresholds late in the game, among many other missteps. The CDC stopped referencing PACE years ago and no longer recommends GET and CBT for ME/CFS. Yet PACE has not been retracted and the CBT/GET treatment paradigm still holds sway in the UK and other countries. Now these experts are seeking to apply their questionable approach to people with prolonged symptoms after Covid-19, as I have noted.

In the US, the battle lines over MUS and PPS and related issues appear less rigidly drawn. Yet clinical care is still influenced by the general tendency of medicine to presume that people experiencing symptoms for which no organic explanation has been identified most likely need psychologically oriented treatments. In the 1990s and later, the UK’s approach to chronic fatigue syndrome exerted a major detrimental impact on decisions taken by the US Centers for Disease Control and on US medical practice in general.

The biopsychosocial approach to MUS has also made inroads in the US, and could influence the care and treatment available to long-Covid patients going forward. Because these sorts of interventions are short-term and inexpensive, government agencies and disability insurance companies are often happy to adopt them in efforts to save money, even when evidence for their effectiveness is minimal or non-existent.

A key document in the NHS effort to promote the biopsychosocial approach to MUS is the Joint Commissioning Panel for Mental Health’s Guidance for commissioners of services for people with Medically Unexplained Symptoms, published in 2017. Goodelf, an anonymous blogger, has recently posted a revealing analysis of how the JCPMH document distorts the available data to strengthen its case. The analysis relies on doing something casual readers won’t, reviewing some of the studies cited to double-check whether they do or don’t support the points being made.

(Goodelf’s latest is the sixth in a series of posts on the research on MUS and how it has been applied in UK health policy. LIke this one, they can all be found on the Opposing MEGA website.)

Both MUS and ME/CFS are likely to become prominent points of discussion and contention as the number of long-Covid cases rises. Many specialists will want to grab slices of the long-Covid pie–whether or not it is warranted by the science. More and more journalists will likely be covering these issues–sometimes responsibly, sometimes not. This could all end up being a mess, although research arising out of long-Covid might very well shed light on mechanisms behind ME/CFS and MUS as well.

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