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People with COVID-19 symptoms are resorting to Facebook groups for answers

Amid myriad problems with coronavirus testing, people with symptoms but no diagnosis are finding that online forums can provide some clarity and emotional support.

People with COVID-19 symptoms are resorting to Facebook groups for answers
[Photo: Ilya Pavlov/Unsplash]
as nurses and doctors learned how to effectively take samples, and some have expressed concern about a particularly . While Brady has had the benefit of getting multiple tests, not everyone has been able to access one. In some countries, such as the U.S., COVID-19 tests have been hard to come by depending on where a person lives and what health system they go to. Especially in the early days of the COVID-19 outbreak, tests were sometimes reserved for only the most severe cases. Some people have come to support groups because they are experiencing symptoms but have not been able to access a test to confirm they have COVID-19.

In the support group, people share symptoms that were not as frequently associated with COVID-19 early on, such as body aches, headaches, and lethargy. The group’s administrator, Jay Sinrod, has also held polls to help people get a sense of the most common symptoms among participants. He and other moderators in the group have also been vigilant about taking down political content, misinformation, and conspiracy theories, which he says are not welcome.

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2020欧洲杯体育线上投注Understanding COVID-19’s symptoms has been difficult for both doctors and patients alike. The disease appears to manifest in a variety of ways, though much of the research is not firm. Strange rashes and toe lesions are a . Anecdotal evidence has lead researchers to consider a link between . For those with severe symptoms, the disease may , an immune response that can be very damaging to the body.

2020欧洲杯体育线上投注There are now several digital efforts underway to better identify COVID-19’s symptoms. In April, Massachusetts General Hospital launched a in an effort to suss out symptoms, especially in light of a lack of available testing. The hope is that this information will help doctors to better identify COVID-19 and connect people with the care they need earlier.

Others are hoping to bring more clarity to COVID-19 for both doctors and patients. Fiona Lowenstein, a self-described writer, producer, and yoga teacher who runs a queer wellness collective called the Body Politic, where people can discuss symptoms and speak with doctors in an informal setting. In for The New York Times, Lowenstein describes her own frustratingly long recovery process, a fear of relapsing symptoms, and a yearning for more information that simply didn’t exist. These sentiments have been echoed in countless threads online: How long will this last?

At least I know I’m not the only person on this planet.”

Kate Daly

2020欧洲杯体育线上投注Another little-discussed element of COVID-19 that people in the support group have bonded over is the long-term effects of the disease. “You don’t need a support group for a two-week thing,” says Kate Daly, a software product owner in Pittsburgh. She says she’s been experiencing symptoms for 10 weeks that have shifted from intense breathing difficulty to daily fatigue and low-grade fever. Her first and only test came back negative and she has been unable to get a subsequent test. It is unclear if these symptoms are from COVID-19 itself, some sort of post-viral fatigue, or another illness entirely.

The Facebook support group has been helpful for her as she navigates her ongoing lethargy. “At least I know I’m not the only person on this planet,” she says.

But perhaps what is most frustrating for everyone in the Facebook group, whether they’ve tested positive or not, is not knowing if they are still infectious to others. The Centers for Disease Control and Prevention says that it doesn’t know how long a person remains infectious. The agency only notes that those who are exposed are likely to develop symptoms within 14 days if they were infected. For the time being, doctors are advising anyone presenting symptoms to stay isolated. But these recommendations leave a lot of questions open for those experiencing symptoms.

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2020欧洲杯体育线上投注“Am I going back to work with a level of immunity? Or am I going back still recovering from a virus and being more susceptible to getting COVID. . . . That’s why I’ve tried to chase an answer, really,” says Brady, who is hoping to continue volunteering as a nurse during the pandemic. But that answer may be a long time off.

2020欧洲杯体育线上投注Brady says she isn’t likely to get an antibody test until she returns to work, and she can’t return to work until her symptoms clear. At the very least, she can continue visiting the Facebook group, where Sinrod and others post new information about the virus.

2020欧洲杯体育线上投注“It was useful to see other people had similar experiences,” she says.

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About the author

Ruth Reader is a writer for Fast Company. She covers the intersection of health and technology.

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