Bloomberg: Chronic Fatigue Was Neglected for Decades. Then Came Covid

SNT Gatchaman

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Bloomberg: Chronic Fatigue Was Neglected for Decades. Then Came Covid [Archive]

ME/CFS patients battled for recognition as researchers struggled for funding. The pandemic finally gave science the scale to start finding answers.

Jason Gale

Bateman came to understand the impact of exertion over many years of interacting with patients. Some struggled even to remain upright because their bodies weren’t properly regulating heart rate and blood flow. Long Covid made it even clearer that these limitations weren’t simply a result of poor physical conditioning. Among the sick were athletes who kept trying to exercise their way back to health, only to become sicker.
“People who were really fit suddenly couldn’t do anything,” Bateman says. “That is not deconditioning. Hello.”

“The pathology of PEM is completely different from being physically inactive,” Rob Wüst, a muscle physiologist at Vrije Universiteit Amsterdam who co-led the research, said at the time.

For Bateman the idea that targeting the immune system might relieve ME/CFS has a personal resonance. Years after developing the condition, her sister was diagnosed with cancer. Bateman watched as chemotherapy did something neither woman expected: Shauna’s ME/CFS symptoms receded. The improvement didn’t last indefinitely, but Bateman never forgot it.

Cancer doctors in Norway noticed something similar.

Beginning in 2007, oncologist Øystein Fluge and physician-researcher Olav Mella at Haukeland University Hospital in Bergen found that some cancer patients with ME/CFS felt better after treatments that affected their immune system. They began investigating whether the immune system might also be playing a role in ME/CFS.

Researchers then tried daratumumab, another cancer drug that targets different immune cells. The results were striking, if preliminary.

The study group was small, everyone knew they were receiving the drug, and there was no placebo group — producing the kind of early result that’s misled the field before. Fluge and Mella are now waiting for the results of a larger randomized trial involving 66 patients, which began in 2025 and is expected to report in 2028.

Bateman describes the growth in scientific knowledge as an exponential curve: nearly flat for years before bending sharply upward after Covid. “I’m in my seat with my seat belt on,” she says. She knows, though, that scientific excitement doesn’t necessarily translate into progress that changes patients’ lives.
For most of her career, Bateman says, the field lacked the science, funding and “traction” needed to mount meaningful treatment trials. Now, at least, those trials have begun.
 
I don't recognise the characterisation that Long Covid has brought amazing science and rigour to the field. It actually brought a bunch of ill informed people to replicate prior findings who then on the whole went on to completely ignore the existence of ME/CFS and PEM. Prior conditions were meant to be excluded as part of Long Covid but a very large percentage likely have ME/CFS and yet no one has assessed them properly for it and the methods these people have used for assessing PEM or ME/CFS have been frankly atrocious. They sure burnt a lot of money getting no where.

For all that what did ME/CFS get? A decrease in funding at the NIH and barely any increase in papers. Now the Long Covid money has dried up the papers are slowing down and we don't seem to be any closer, we just had a flurry of activity for 5 years with lots of people who didn't know what they were doing and never bothered to check.
 
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