By David Tuller, DrPH
Long Covid stories and commentaries seem to be everywhere, too many to keep track of! This week, The Wall Street Journal published an opinion piece about long Covid and ME/CFS that is breathtakingly ill-informed, and more importantly, just wrong. Beyond that, it showed remarkable disrespect for patients and their experiences.
(After this low for the WSJ opinion page, what’s next? A piece arguing that women with doctorates should be called €œkiddo€ rather than €œDr€? Oops!)
The author, Jeremy Devine, is a resident psychiatrist at McMaster University in Ontario, Canada. (In other words, he’s still in training–we all make stupid mistakes when we’re still in training, so perhaps in 20 years Devine will be able to use that excuse when trying to explain away this embarrassment.) Perhaps inexperience explains what might be Devine’s most striking misstep among many: When asserting that psychogenic explanations for ME/CFS represent €œthe prevailing view among medical practitioners,€ he links to the PACE trial.
Is Devine aware of the controversy surrounding PACE? Does he not recognize that it has been effectively discredited, its recommendations dropped years ago by the US Centers for Disease Control and Prevention? Perhaps he did not read the open letter to The Lancet that I organized in 2018 about the PACE trial’s €œunacceptable methodological lapses.€ The letter was signed by more than 100 experts from Stanford, Columbia, Berkeley, Harvard, University College London, Queen Mary University of London, Johns Hopkins, Georgetown, Yale, etc.
PACE is a likely example of research misconduct, given that the investigators failed to disclose an incredibly salient detail: A significant minority of the sample–13%–met a key outcome threshold at baseline. This study is not something that a McMaster’s resident psychiatrist should be referencing as an example of anything except how not to conduct a clinical trial. (Come to think of it, the open letter to The Lancet has no signatories from McMaster University. Now maybe we know why.)
In fact, the animating trope of Devine’s piece could have been taken directly from the PACE playbook. It amounts to this: People with non-specific complaints who claim to have long Covid are experiencing psychogenic symptoms and/or have a mental illness. That message is delivered without nuance or caveats. (Devine does allow that some might be experiencing genuine physiological symptoms related to a co-morbidity or prior illness.)
Devine doesn’t use the phrase €œmass hysteria,€ but he might as well have. The thrust of his argument is that long Covid is essentially a crowd-sourced phenomenon, triggered and encouraged by over-the-top social media posts, inflammatory news coverage, and now research funding that will further lead to the “legitimizing” of a non-existent condition and “patient denial of mental illness.” Devine appears to dismiss out-of-hand the possibility that pathophysiological processes could be implicated in these widely reported post-Covid symptoms, including profound exhaustion, cognitive dysfunction, post-exertional malaise, and others. €œLong Covid is largely an invention of vocal patient activist groups,€ he declares.
Interestingly, Devine considers it a cause for suspicion that patients themselves were the ones who first studied, drew attention to and disseminated information about their own prolonged symptoms. He refers to this as €œa highly unorthodox origin€ for the category of phenomena we now refer to as long Covid. Yet this was a new pathogen, patients were the ones experiencing said symptoms, and the health care systems in the US and elsewhere were overwhelmed. It is unclear what route of identifying and tracking long Covid would have met Devine’s approval, none, I guess, since he does not believe in the phenomenon in the first place.
A misogynistic and anti-queer dog whistle
Devine undermines his case by noting that Body Politic, the online community that first surveyed those experiencing post-covid symptoms, €œdescribes itself atop its website’s homepage as ‘a queer feminist wellness collective merging the personal and the political.’€ Since Devine presents this Body Politic self-description without further comment, the implication is that an analysis by queers, feminists, and people who see links between their own health and societal inequities is inherently suspect and should not be taken seriously.
Perhaps that kind of appeal to €œanti-woke€ attitudes resonates with the general readership of the Wall Street Journal opinion page. Certainly the absence of a cogent explanation, or any explanation at all, as to why the sexual orientation and gender politics of those gathering data would automatically bias their findings suggests that Devine is deploying this meme not as a scientific argument but as a misogynistic and anti-queer dog whistle.
Devine makes much of the low numbers of people in the long Covid surveys who received positive viral tests, implying that including them in studies violates core scientific principles. He does not mention a complicating factor: As everyone knows, viral testing was scarce in the first months of the epidemic and patients with suspected or presumed Covid-19 were advised to stay home unless they urgently needed medical care. Devine is essentially presuming that those who are currently suffering but did not obtain a positive viral test are hypochondriacs, and the same goes as well for those who did obtain a positive viral test and are still suffering.
Devine decries the decision by the US Institutes of Health to devote more than $1 billion to studying long Covid as €œa victory for pseudoscience.€ He suggests that devoting biomedical research resources to long Covid represents €œsubjugation of scientific rigor to preconceived belief.€ It is worth noting that there are few better examples of such €œsubjugation€ than the PACE trial he apparently endorses as the €œprevailing view€ in the profession.
For what it’s worth, Devine’s opinions are not shared by Anthony Fauci, the nation’s leading infectious disease doctor, who was quoted about long Covid in today’s Los Angeles Times. Here’s the relevant section:
Fauci says it’s impossible to know how many are affected [with long Covid], why the virus doesn’t seem to be done with them or how long their symptoms could last€¦In the absence of lab tests that can diagnose the problem, €œa lot of times people think it’s a psychological disorder,€ Fauci said. €œIt’s not.€ (Fauci’s record on ME/CFS stretching back to the 1980s is a different matter that has been documented in Hillary Johnson’s prodigiously reported 1996 book Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic.)
So how does Devine know for sure what he knows for sure about long Covid? He draws, of course!–on parallels between long Covid and what he calls chronic fatigue syndrome. We learn from Devine that ME/CFS patients and others with unexplained symptoms €œoften vehemently reject a physician’s diagnosis that suggests an underlying mental-health issue, in part because of the stigma around mental illness and the false belief that psychologically generated symptoms aren’t €œreal.€’
The assertion that patients reject psychological and behavioral interventions because of the stigma around mental illness is a favorite rallying cry of the biopsychosocial ideological brigades. I suppose that could be happening in some cases. But Devine fails to note that patients often reject such a diagnosis because there is insufficient evidence for it beyond the doctor’s opinion–and doctors can be wrong, as we all know. If a doctor keeps insisting based on his/her/their own preconceived ideas about ME/CFS that a patient has a mental illness when they do not, it is not surprising that some respond €œvehemently.€
The word “vehemently” is striking. I assume Devine uses it to create the impression that patients are not only irrational but also belligerent and aggressive when they reject wise clinical assessments from doctors like him. Unfortunately, he seems to have some things backwards. He also does not come across as a sympathetic listener. Perhaps Devine will mature with time and, as his psychiatric training progresses, learn to express himself with a greater sense of compassion and a less arrogant approach to patients’ concerns.
And let me say this clearly: Patients should reject the clinical judgment of any physician who reviews the history and conduct of the PACE trial and still endorses it–whether in an opinion piece in The Wall Street Journal, a medical consultation, or anywhere else.