Thread by @Dakota_150

'Some long-covid patients oppose an exercise trial aiming to help them'

'NIH’s RECOVER initiative plans to study exercise as a potential treatment for long covid. Some long-covid patients say exercise does them more harm than good.'

washingtonpost.com/wellness/2023/…

"Some long-covid advocates, however, say that any exercise trial could be potentially dangerous for long-covid patients with myalgic encephalomyelitis (ME/CFS), also known as chronic fatigue syndrome."

Advocates now worry that long-covid patients with ME/CFS could be similarly harmed if they take part in any exercise study.

Long COVID Justice, a patient advocacy group, started a petition at the end of last year calling for the NIH trial to be stopped. #MEAction, a nonprofit

advocacy group for people with infection-associated chronic illness, also sent two letters, in February and March, to a RECOVER committee calling for an end to the trial.If the trial begins, #MEAction asked for any patient with ME/CFS or post-exertional malaise to be excluded,

arguing that exercise would not be helpful to this population.

“Worst-case scenario, this would harm a lot of people,” said #MEAction’s U.S. advocacy director, Ben HsuBorger."

"“How much longer are we going to be sick and have to watch this agonizing process unfold?” he asked. “When we’re prioritizing these kinds of trials and then we’re being told that help is on the way, it just doesn’t really feel like it.”

"David Systrom, an assistant professor of medicine at Harvard Medical School, believes that there is a big overlap between POTS, ME/CFS and long covid. Systrom is co-chair of a RECOVER task force looking at commonalities between long covid and other post-viral syndromes. It’s

unclear how many long-covid patients have ME/CFS, POTS or both conditions, he said."

H/T @loscharlos @TheCrankyQueer @bhsuborger @MEActNet @LongCOVIDnetwk

Just sharing, @StribJO @jburcum @KateMurrayMPH