Fear of Listening to Patients: Short-sighted on Long Covid

It would be mistaken to suppose that disdain for patients is an actual requirement of psychiatric training in North America, but you would have good reason to wonder about it after reading a recent op-ed in the Wall Street Journal by Dr. Jeremy Devine, a psychiatry resident at McMaster University in Canada. According to Devine, the phenomenon known as “long Covid,” in which COVID-19 patients continue to experience perplexing symptoms for weeks or months, is actually nothing more than the “invention of vocal patient activist groups” who, for unexplained reasons, have irrationally chosen to deny their need for psychiatric care.

Devine’s essay shows scant regard for the experience of patients, who are unable, in his opinion, to comprehend their own physical state. Rather, he opines that tens of thousands of people have been misled by a little known organization called the Body Politic COVID-19 Support Group into demanding biomedical research into their condition, when they really should deferentially accept that they are suffering from an “underlying mental-health issue.” After all, Devine explains, “a central feature underlying many psychosomatic-symptom disorders is a fixed belief that one is ill and unlikely to recover.”

Strangely enough, the victims of this remarkably successful disinformation campaign apparently included Dr. Francis Collins, director of the National Institutes of Health, and Dr. Anthony Fauci, chief medical adviser to President Biden, neither of whom agree with Devine’s description of long Covid as produced by “patient denial of mental illness and psychosomatic symptoms.”

The problem, as Devine sees it, is that patient advocacy groups are just too mouthy. Instead of politely acknowledging that long Covid reflects psychologically generated symptoms, the Body Politic has insisted on “cultivating patient led research.” The chauvinistic scare quotes are Devine’s, signifying his horror at the prospect that patient-directed research might pollute psychiatry’s pristine turf.

Nor is the Body Politic Devine’s only bête noire. He is equally ill-disposed toward Solve ME/CFS, a group that seeks to encourage research into the poorly understood condition variously called myalgic encephalomyelitis or chronic fatigue syndrome. Among its other offenses, as Devine sees them, Solve ME/CFS had the temerity to hire “a lobbyist to pressure federal agencies to commit more funds to research.” Lobbyists are a fixture in Washington, D.C., seeking to influence virtually every federal agency. In 2020, according to OpenSecrets.org, at least 2120 organizations employed lobbyists on health issues (behind only expenditure and tax issues). In 2018, the American Psychiatric Association spent $957,300 on lobbying.

Whatever the Solve ME/CFS lobbyist has been able to accomplish in Washington, D.C., the word has evidently failed to reach McMaster University. Devine maintains that his psychiatric theory of ME/CFS is the “prevailing view among medical practitioners,” but that has not been true for many years. In 2015, the U.S. Institute of Medicine (now the National Academy of Medicine) issued a report finding that ME/CFS, is a “serious, chronic, complex, systemic disease”— not a psychiatric or psychological disorder. Key U.S. health agencies, including the Centers for Disease Control and Prevention and the National Institutes of Health, have taken a similar approach. The 2011 PACE trial, a British study of psychologically oriented treatments for ME/CFS – the only source cited or linked by Devine in his oped – has been methodologically discredited. Psychological treatments were also rejected last fall in a new draft of ME/CFS clinical guidelines from the UK’s National Institute for Health and Care Excellence. As a 2017 graduate of the University of Toronto medical school­, Devine has little excuse to be so poorly informed about the current state of ME/CFS research.

Devine worries that “a large group of impressionable patients” has been bamboozled into thinking that “they are helpless victims of an unrelenting sickness,” when in fact they are suffering only psychosomatic symptoms that can be resolved through psychiatry. If so, it would also mean that highly credentialed physicians such as non-psychiatrists Dr. Collins and Dr. Fauci, and even some psychiatrists, have likewise yielded to “pseudoscience” that will “more harm than help patients.”

One would hope for more humility from a new physician in training for a specialty that once diagnosed homosexuality as a mental illness, blamed autism on refrigerator mothers, and attributed asthma to cries for help from a smothering parent. There is much yet to learn about long Covid and ME/CFS. If Jeremy Devine truly wants to be a healer, he ought to stop slighting patients and their advocacy groups and begin listening to them.

Author Steven Lubet was diagnosed with ME/CFS in 2006.