Covid graphic
Echoes of chronic fatigue in the effort to blame the coronavirus for a host of questionable symptoms.

"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 $115 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.