Neurotics With Attitude
Long Covid advocates respond to a provocative New Republic article on the etiology of their condition.
Last week, Taylor Lorenz tweeted that the New Republic had "published a story that included dangerous medical misinformation," had "platformed discredited pseudoscience," and "should be retracted." I figured it must have been good.
The piece, written by Natalie Shur, examined the plight of "Long Covid" sufferers and the history of psychogenic illnesses. Shure touched on similar themes to those in Dr. Peter Robinson's recent essay at TAC: neuroticism, fanaticism, and the plight of patients who resent the implication that their pain is "all in their heads."
It was a more provocative read than I had anticipated. Shure compared the debate about the etiology of Long Covid to that surrounding conditions such as myalgic encephalomyelitis and chronic Lyme disease, and even made a cautious allusion to hysteria:
It’s tempting to see Maxanne’s story as yet another illustration of a point often made about long Covid: As public health professionals Steven Phillips and Michelle Williams put it in The New England Journal of Medicine last year, “Our medical system has a long history of minimizing women’s symptoms and dismissing or misdiagnosing their conditions as psychological.”
Perhaps, but the truth is more complicated than that. In a profit-driven system, if some symptoms get minimized, others are maximized. Eli Lilly, for example, famously spent years marketing the concept of extreme PMS to generate novel demand for Prozac, whose patent was about to expire. Thanks to overdiagnosis and overtreatment, 25,000 women in the United States undergo unnecessary breast cancer treatment each year, per one recent estimate. It’s widely acknowledged that most C-sections are not medically necessary. And while misdiagnosis does happen, it’s arguably worse to err on the side of biomedicalization: For example, FND [functional neurological disorder] patients with functional seizures have been inappropriately prescribed antiepileptic drugs with serious side effects. And it’s no coincidence that Eliot Slater, the mid-century neurologist who fiercely denounced the concept of hysteria, was also one of history’s most enthusiastic defenders of lobotomies.
Some sufferers resist the possibility that their condition has a psychogenic component, because they have built identities around being Long Covid patients. Some of these sufferers-cum-activists have sought to exclude therapy and exercise as treatments for Long Covid and other apparently psychogenic conditions. Shure notes, for example, that exercise and therapy is "the only clinically validated treatment" for people with "myalgic encephalomyelitis/chronic fatigue." But advocates for sufferers of MCE/CF, Shure says
have successfully gotten GET [exercise] and CBT [cognitive behavioral therapy] withdrawn from official ME/CFS treatment guidelines in the United States and the U.K. and have also objected to it as a treatment for long Covid. The Atlantic’s Ed Yong—the most respected reporter in the world on long Covid—labeled PACE [a British study that recommended exercise for some potentially psychogenic conditions] “now discredited,” and warned that anyone with post-exertional malaise who pushes themselves to exercise could get “permanently worse”—a claim that isn’t evidence-based, and that would make the condition suspiciously unique in the annals of medical knowledge. MEAction is running a PSA campaign geared toward warding viewers away from the treatments validated by PACE. Its website contains links to anecdotes about patients who say they had to go to bed or use wheelchairs after short walks.
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Long Covid sufferers are similarly unwilling to entertain the possibility that their condition is at least partially psychogenic, even as, Shure notes, the definitive longitudinal NIH study on the condition
found no tissue damage in long Covid patients, no evidence of viral persistence, and no abnormalities in any organ function relative to controls. “We are finding little to no abnormalities,” lead author Dr. Michael Sneller told NPR before the study’s publication. “Echocardiogram, pulmonary function tests, X-rays, brain MRIs. You name it. Laboratory markers of organ dysfunction. We’re not seeing any of that … and precious little evidence of immune activation.… I’m running out of tests to do, basically.” One association his final paper did find, however, was an association between long Covid and anxiety disorder.
I am neither a neurologist nor a doctor of any sort. For all I know, researchers in the coming years will find a biological marker of Long Covid, though pumping billions of dollars into research creates perverse incentives to reject more obvious conclusions. Still, as I read through the army of people in Shure's Twitter replies, I can't help but thinking they seem a bit, well, hysterical.