Citizen Scientists Take on the COVID-19 Challenge

'Among the many longer-term health problems that have been associated with COVID-19 disease are shortness of breath, fatigue, cognitive issues, erratic heartbeat, gastrointestinal issues, low-grade fever, intolerance to physical or mental activity, and muscle and joint pains,' wrote Dr. Francis S. Collins, the 16th director of the US National Institutes of Health, on September 3, 2020.

'COVID-19 survivors report that these symptoms flare-up unpredictably, often in different combinations, and can be debilitating for days and weeks at a time. Because COVID-19 is such a new disease, little is known about what causes the persistence of symptoms, what is impeding full recovery, or how to help the long-haulers.'

New information is now emerging from the first detailed patient survey of the post-COVID syndrome, also known as Long COVID.

What’s unique about the survey is that it has been issued by a group of individuals who are struggling with the syndrome themselves. These citizen scientists, who belong to the online Body Politic COVID-19 Support Group, decided to take matters into their own hands. They already had a pretty good grip on what sort of questions to ask, as well as online access to hundreds of long-haulers to whom they could pose the questions.

This group opted to cast a wide investigative net, concluding that limiting its data to only people who tested positive for COVID-19 might lead to the loss of essential information on long-haulers. It turns out that half of the respondents hadn’t been tested for SARS-CoV-2, the coronavirus that causes COVID-19. The other half was divided almost equally between those who tested positive and those who tested negative.

Some highlights of the survey’s findings are posted at this link.