Long before the world had heard of long COVID, Sanna Stella experienced first hand how a simple respiratory infection can shape shift into a chronic illness.
Receiving an official diagnosis did little to change Stella's daily reality."I got pretty frustrated and angry that I was going to be stuck in bed and nobody could do anything," she says. Launched in 2016, the study was disrupted by the COVID pandemic, which slowed its progress and limited the number of participants — only 17 ME/CFS patients were ultimately included.
The authors conclude that ME/CFS is primarily a brain disorder, probably brought on by immune dysfunction and changes in the gut microbiome.The study provides compelling evidence, he says, that the immune system is chronically activated:"As if it's engaged in a long war against a foreign microbe, a war it couldn't completely win and therefore had to continue fighting."
A region of the brain that's involved in perceiving fatigue and generating effort was not as active in those with ME/CFS.This is a novel observation, says Komaroff, demonstrating that a brain abnormality makes it harder for those with ME/CFS to exert themselves physically or mentally.Despite the huge amount of data collected, the small number of people in the study and its strict inclusion criteria mean the findings don't necessarily apply to the broader ME/CFS patient population.
Bateman says she was disappointed the team did not shed more light on post-exertional malaise. That's the escalation of illness that develops in the days after a patient pushes themselves.
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