The dubious origins of long COVID

‘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.

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