The questionable origins of Long Covid

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The questionable origins of Long Covid


“Long Covid,” or post-Covid syndrome, is an emerging disease that has gained significant media attention – and now federal funding. The National Institutes of Health announced a $ 1.15 billion initiative last month to research the “prolonged health consequences” of Covid-19 infection.
The subject deserves serious study. Some patients, especially older patients with co-morbidities, have symptoms that last longer than a coronavirus infection. But these symptoms can also be psychologically generated or caused by a physical illness unrelated to the previous infection. Long Covid is largely an invention of activist vocal patient groups. Legitizing it with generous funding risks worsening the symptoms the NIH is hoping to treat.
The concept of Covid Long has a very unorthodox origin: online polls produced by Body Politic, which launched in 2018 and describes itself on the homepage of its website as “a queer feminist welfare 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 to “cultivate patient-driven research,” the organization coordinated a series of surveys online on persistent symptoms. Based on these findings, Body Politic produced the first long Covid report in May.
But many of the survey respondents who attributed their symptoms to the consequences of a Covid-19 infection likely never had the virus in the first place. Of those who identified themselves as having persistent symptoms attributed to Covid and responded to the first survey, not even a quarter had tested positive for the virus. Almost half (47.8%) have never been tested and 27.5% tested negative for Covid-19. Body Politic released the results of a second larger survey in December 2020. Of 3,762 respondents, just 600, or 15.9%, had tested positive for the virus at any time.
Why include symptoms reported from those who have never had a confirmed infection? “Due to the dire lack of available tests in many areas and the prevalence of false negatives, we do not believe that the experiences of people with COVID-19 symptoms should be ruled out because they have not received a test result. positive test, ”wrote the survey’s authors in their first report. “We believe that future research must take into account the experiences of all people with symptoms of COVID-19, regardless of test status, in order to better understand the virus and to emphasize the importance of early and widespread testing. ”

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