Patients suffering from this complex chronic health condition face ignorance, stigma and discrimination.
“[People] don’t realize that vaccinations may stop you from dying from COVID, but it’s not stopping you from getting long COVID,” Adinig said.
As Iwasaki stated, “We should not be thinking about long COVID as something that happens to certain groups of people. It can affect anyone of all ages.” Monterroso said she has also faced hostility for coming into appointments with her own research. They’ll “treat you nice,” she said of the doctors, “but the moment you defend yourself or advocate for yourself, you then become an obstinate character that [they] have to demolish.”
Despite a lack of evidence that long COVID is psychological, some of the studies RECOVER has funded look at cognitive behavioral therapy,as a treatment for long COVID. Gutierrez said she thinks money would be better spent on medication trials and research to better understand complex, chronically underfunded conditions that can accompany long COVID, like ME/CFS and dysautonomia.
Adinig has collaborated with Dr. David Putrino, a leading long-COVID advocate who runs the Putrino Lab out of Mount Sinai Hospital in New York City. His labthat they will soon launch a new clinic “dedicated to recovery from complex chronic illnesses” including long COVID, ME/CFS, and Ehlers-Danlos Syndrome, and chronic lyme disease.
The ability to pay for care falls along class and racial lines. Many long-COVID patients are unable to work, and even if they get— a big challenge that often necessitates hiring a lawyer — those checks are barely enough to cover basic expenses. Others need work accommodations, like being able to sit while working, having reduced hours, or working remotely. But those kinds of accommodations aren’t always possible in more blue-collar work, like waiting tables, Gutierrez pointed out.
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