Thread by @loscharlos

“A growing trove of research shows that PEM has physiological underpinnings… When ME/CFS patients & those with #LongCovid exercise, David Systrom discovered their veins were not moving blood to the heart efficiently, or ‘priming the pump.’”nationalgeographic.com/premium/articl…

“He also found problems with oxygen exchange by the exercising muscle. Through skin biopsies, he sees nerve damage in most patients he tests. ‘It’s not what we’d expect in pure deconditioning,’ Systrom says.” #LongCovid

“Systrom’s work points to a dysfunctional autonomic nervous system, which controls functions like breathing & circulation.. & moves blood and oxygen through the body during and after exercise…This all impairs the body’s ability to recover.” #LongCovid

“Systrom, & other physicians who treat ME/CFS & #LongCovid emphasize they don’t recommend any exercise until, after a combination of medication, treating comorbidities, & pacing, a patient can consistently perform daily activities without triggering PEM.”

Repeated crashes of PEM are like an injury,” Yellman says. “If you stub your toe really hard on the door, you need to let it heal before you put your shoe back on. If you stub it every day, there’s going to be scarring and the toenail isn’t going to grow back.” #LongCovid

“For decades, PEM has been a hallmark symptom of ME/CFS, a little-understood illness usually manifesting after a viral infection… People with ME/CFS rate lower on quality-of-life measures than those with cancer, stroke, and multiple sclerosis—in large part because of PEM.”

“How PEM presents varies widely. A shower can leave some confined to bed for days. A short visit with friends can cause flu-like symptoms... Watching a movie can lead to migraines & light sensitivity. Most.. describe a profound fatigue that can feel like a conscious coma”

“In ME/CFS, PEM has historically been dismissed or downplayed as a combination of deconditioning and a psychological fear of exercise. Physicians prescribed graded exercise—therapy in which the intensity of physical activity is increased incrementally.”

“Eventually, U.S. & U.K. governments removed GET from ME/CFS official treatment guidelines. Still, exercise is commonly prescribed to #LongCovid patients: half of the current 388 international long COVID clinical trials are focused on rehabilitation, many involving exercise.”

“In cardiopulmonary exercise tests spaced 24 hours apart designed to trigger PEM, researchers find while active, sedentary, and even people with conditions like heart disease & cystic fibrosis perform generally the same one day to the next.. ME/CFS do worse on the second test.”

“Other studies find..patients show decline on cognitive tests post-exercise while healthy people perform better. The studies also show these patients are missing certain metabolites in their urine, which suggests their bodies aren’t performing the necessary functions to recover”

“Because the onset of PEM is often delayed by 24 to 72 hours after exertion, patients may appear functional one day, then crash the next, making it hard to track. And, since there is no official diagnostic code for PEM, its prevalence.. is difficult to determine via EHRs”

“Clayton Powers, a physical therapist with the University of Utah, first learned about PEM five years ago, while treating patients with #POTS.. that can be helped by a form of graded exercise. But he noticed many of his patients weren’t improving with his exercise prescriptions.”

“He changed his tactics, focusing instead on using heart rate monitors, education, and lifestyle modifications to help patients avoid PEM. ‘The amount of improvement switching from exercise to focusing more on pacing and energy conservation was drastic,’ he says.” #LongCovid

“With a growing awareness.. clinicians, and researchers are pushing back against the National Institutes of Health’s $1.15 billion RECOVER project’s proposed exercise trial for #LongCovid.”

“Even if the trial successfully screens for PEM, advocates suggest that government funds for the five planned clinical trials might be better spent on testing pharmacological treatments that could help more #LongCovid patients & others with post-viral illness.”

“If exercise is medicine, you should treat it like medicine,” @PutrinoLab says. “You should understand what the contraindications are, who might have adverse effects of the medicine, and how to dose the medicine effectively for each person.” #LongCovid

“@PutrinoLab & his colleagues developed a specialized rehabilitation.. unlike graded exercise that encourages patients to push through discomfort, program is scaled back to about 30% of the previous effort at first sign of PEM, & some people won’t progress past a certain level.”

“When Jessica Lambert was seen at a Chicago #LongCovid clinic in May 2021 after months of debilitating symptoms, a physical therapist told the formerly active, 37-year-old she was out of shape and started her on an exercise program.”

“Lambert left the sessions exhausted, a fatigue beyond anything she’d ever felt after weightlifting and cycling. The next day she would wake up feeling worse. Forty-eight hours after therapy, her symptoms peaked, with a fever, deep muscle pain, nausea, and a migraine”

“I couldn’t get out of bed, except to move to the couch. I’d stay there for the next 4-6 days & start climbing out of it just in time for my next appointment.” After 2 and a half months of weekly sessions and a trip to visit her mother, she spent four months bedridden.”

Lambert didn’t know it, but she was experiencing post-exertional malaise, or PEM, one of the most mysterious & debilitating symptoms of #LongCovid. Defined as significant worsening of symptoms or development of new ones following even minor physical, mental or emotional exertion”

“People come in & tell me, I used to work out. I used to run. I used to love my job as VP of my company. And now I can’t do any of that,” says Mark VanNess.. who studies PEM in #LongCovid.. “These are not people that want to stay home & collect disability. They’re forced to.”

Thank you @kaelyn_lynch for this important piece — navigating this topic is a minefield — and I thought you navigated well !