Thread by @loscharlos

“#LongCovid has taken to new heights a medical conflict that shows up with cancer and other dire diagnoses: the tension between the desire for evidence and the pressing needs of patients who are suffering.”
washingtonpost.com/health/2022/11…

“Government-sponsored and government-funded mechanisms are designed for incremental innovation — for steady and safe discoveries,” said @PutrinoLab, director of rehabilitation innovation for Mount Sinai Health System in New York.

“Months-long waits at #LongCovid clinics combined with the sluggish pace of research have left vulnerable patients clamoring for immediate care as manufacturers bring novel remedies to market, often with little data behind them.”

“But until researchers discover the mechanism — or, more likely, mechanisms — that cause #LongCovid, clinicians are having to rely on their experience treating other illnesses.”

‘We’re kind of stuck,’ said Michelle Haddad, a neuropsychologist who runs Emory long-covid clinic”

“Many long-haulers describe being devastated by disabilities that range from fatigue to brain fog & body-wracking tremors. Facing disbelief from their families & physicians, & frustrated by the slow pace of science, they are turning to social media to share ideas for relief”

“Robert Harris, a 48-year-old veteran in Texas, estimates he has paid $25,000 for treatments, from over-the-counter supplements to the horse dewormer ivermectin and hyperbaric oxygen. ‘I can’t figure out what research is being done, what treatments have been approved’ he said.”

“@brucep13 said he is working on contracts for clinical trials of a ‘drug combination that we think works,’ said its up to patients & their doctors to decide how to proceed w/ treatment. “We do what clinical pathologists should do: ‘Here is a test report, you treat accordingly,’”

“Meanwhile, clinicians who are running #LongCovid clinics at major medical centers are drawing on their experience treating conditions with similar symptoms, such as #MECFS, or chronic fatigue syndrome; #POTS, a blood circulation disorder that causes a rapid heartbeat”

“We’re using a lot of experience, anecdotal evidence and related evidence with other conditions,” said Benjamin Abramoff, director of the Post-COVID Assessment and Recovery Clinic at Penn Medicine. “A lot of the things we do have not gone through trials.”

“Many rehab experts have been meeting at CDC-funded monthly webinars to pool the expertise they are gaining and come up with guidance published by the American Academy of Rehabilitation and Physical Medicine.”

“For things patients are interested in trying, I won’t dissuade them if the risk of harm is low,” said Jeffrey Fine, director of rehabilitation medicine at NYU Langone Hospital, who said he tries “to meet patients where they are.”

In the meantime, patients continue their own research, through online resources such as Twitter.

“It’s my social life, my family, my research library,” said Molly Gordon,

Overall great piece from @FrancesSSellers & @TracyJan — However one point I still find most physicians & journos not willing to completely acknowledge or address: What’s the risk of doing nothing? With everything we know so far about vascular pathology, treating early likely key.