Online support groups provide advice and encouragement to patients with long COVID. They're also a source of valuable data for researchers. But some doctors worry that they are not always entirely benign.
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Diana Berrent, a New York photographer who caught COVID-19 early in the pandemic, is the founder of and a contributor to the Survivor Corps Facebook group and its sister website. She thinks the choice of support group might be a matter of where someone already spends their time online.“It's really whatever platform you're most comfortable in.”
specializing in a range of conditions get money from the pharmaceutical industry. But with no marketable treatment for long COVID, corporate sponsors are scarce.To be blunt, our financial situation is dire. We estimate Body Politic, including our Slack space, will cease to exist by early 2023 without funding ,” Body Politic“Our team is pursuing private donors, foundations, and strategic partners, and we could use more connections and insights on potential partners.
Now Bond has trouble keeping up with the 95,000 members signed up for her COVID-19 Long Haulers Support group. She also hosts a web page where she posts simplified information on COVID-19 she gets from the National Institutes of Health. Support from other patients is essential for people with chronic conditions, but it need to be paired with solid medical care and support services, advocates say., where 11,000 members meet privately. He appreciates that a human, not an algorithm, chooses which posts he sees. And he thinks Body Politic is well moderated, something he and others suggest patients consider when joining a group.
Conflict among group members may be a source of agitation and that could be a drawback, Davids cautions. He suggests that patients try out a few groups and see what happens when conflicts emerge.
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