Echoes of chronic fatigue in the effort to blame the coronavirus for a host of questionable symptoms.
By Jeremy Devine – The Wall Street Journal.
‘Long Covid,” or post-Covid syndrome, is an emerging condition that has attracted great media attention—and now federal funding. The National Institutes of Health last month announced a $1.15 billion initiative to research the “prolonged health consequences” of Covid-19 infection.
The topic deserves serious study. Some patients, particularly older ones with co-morbidities, do experience symptoms that outlast a coronavirus infection. But such symptoms can also be psychologically generated or caused by a physical illness unrelated to the prior infection. Long Covid is largely an invention of vocal patient activist groups. Legitimizing it with generous funding risks worsening the symptoms the NIH is hoping to treat.
The concept of long Covid has a highly unorthodox origin: online surveys produced by Body Politic, which launched in 2018 and describes itself atop its website’s homepage as “a queer feminist wellness collective merging the personal and the political.” In March 2020, the group’s co-founders created the Body Politic Covid-19 Support Group, and as part of their mission of “cultivating patient led research,” the organization coordinated a series of online surveys on persistent symptoms. Based on the results of these, Body Politic produced the first report on long Covid in May.
But many of the survey respondents who attributed their symptoms to the aftermath of a Covid-19 infection likely never had the virus in the first place. Of those who self-identified as having persistent symptoms attributed to Covid and responded to the first survey, not even a quarter had tested positive for the virus. Nearly half (47.8%) never had testing and 27.5% tested negative for Covid-19. Body Politic publicized the results of a larger, second survey in December 2020. Of the 3,762 respondents, a mere 600, or 15.9%, had tested positive for the virus at any time.
Why include the reported symptoms of those who never had a confirmed infection? “Due to the severe lack of testing available in many areas and the prevalence of false negatives, we do not believe people’s experiences with COVID-19 symptoms should be discounted because they did not receive a positive test result,” the survey authors wrote in their first report. “We believe future research must consider the experiences of all people with COVID-19 symptoms, regardless of testing status, in order to better understand the virus and underscore the importance of early and widespread testing.”
This didn’t perturb NIH Director Dr. Francis Collins, who has repeatedly supported the Body Politic Covid-19 Support Group’s patient-led research initiatives, promoting the surveys in a series of official blog posts. In the announcement of the NIH’s decision to commit $1.15 billion to long Covid research, Dr. Collins explicitly referred to the Body Politic research surveys.
This subjugation of scientific rigor to preconceived belief reflects a common dynamic encountered in clinical practice. Patients who struggle with chronic and vague symptoms often 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 “real.”
By relinquishing the need for objective serological confirmation, and by claiming that long Covid can manifest in a mind-boggling 205 different symptoms, the Body Politic Covid-19 Support Group offered its readership exactly this attractive alternative, leading patients away from treatments that could actually ease their symptoms.
Body Politic wasn’t the only patient advocacy group that drove the NIH funding commitment. Solve ME/CFS (which stands for myalgic encephalomyelitis/chronic fatigue syndrome) was founded in 1987 by patients who felt their chronic and numerous medical complaints—including fatigue, “brain fog,” and an inability to exert themselves physically or mentally—were being dismissed by their physicians and neglected by the medical community.
Since its inception, the organization has insisted, contrary to the prevailing view among medical practitioners, that a variety of ever-changing biological disease mechanisms explain their membership’s chronic symptoms and disability. The organization is fundamentally resistant to the idea that chronic fatigue is a symptom of an underlying mental-health issue—which mainstream medicine would assert is often the case. This is obvious from its website, where one “myth” the group claims to debunk is that ME/CFS is caused by depression and anxiety.
In 2017, frustrated by the lack of mainstream recognition of their condition, Solve ME/CFS hired a lobbyist to pressure federal agencies to commit more funds to research. Then, in December 2020, likely sensing an intuitive link with the emerging idea of long Covid syndrome, this same organization spearheaded a letter—also signed by Body Politic—to congressional leaders urging more federal funding be dedicated to investigating long Covid.
The government listened and now will further perpetuate patient denial of mental illness and psychosomatic symptoms. Two days after the NIH’s funding announcement, Solve ME/CFS announced it was launching the Long COVID alliance, which Body Politic shortly joined. Its mission: “to transform the current understanding of Long COVID and related post-infectious illnesses”—including ME/CFS.
A central feature underlying many psychosomatic-symptom disorders is a fixed belief that one is ill and unlikely to recover. By drawing attention to and legitimizing the ever-present threat of long Covid, medical authorities will lead a large group of impressionable patients to believe that their Covid-19 symptoms have not resolved and that they are helpless victims of an unrelenting sickness. In the past century, the media has played a critical role in perpetuating psychogenic illnesses—chronic brucellosis in the 1940s, chronic Epstein Barr virus in the 1980s, and today (although scientifically debunked) chronic Lyme disease. It is therefore alarming to witness the recent proliferation of uncritical and sensational media stories about long Covid.
The NIH’s decision is a victory for pseudoscience and will do more to harm than help patients.
Dr. Devine is a resident psychiatrist at McMaster University in Hamilton, Ontario.
Featured article licensed from the Wall Street Journal.