How long COVID is accelerating a revolution in medical research

When Liza Fisher’s body became racked by tremors shortly after she was hospitalized with COVID-19 in 2020, she began an 18-month medical odyssey, consulting immunologists, cardiologists, neurologists and countless other -ologists in the hope they would know how to treat the crippling convulsions.

“They had no experience,” said Fisher, 38, a former flight attendant and part-time yoga instructor who now uses a wheelchair. So Fisher sought out fellow sufferers online, joining an increasingly vocal group of citizen scientists in their bid for research targeted at treating long COVID.

Fisher’s experience — and those of her fellow sufferers — is advancing a revolution in research not just for COVID but also many other conditions, experts say. Patients, who have typically been only subjects in the research process, are becoming partners in it.

They are documenting their symptoms online in real time, as well as helping to come up with questions and strategies for surveys and, eventually, to disseminate results.