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The condition often called chronic fatigue syndrome was neglected for decades and it still has no proven treatments. Now the results of an ambitious study from the National Institutes of Health are bringing new attention to the condition, NPR's Will Stone reports.
WILL STONE, BYLINE: Like many patients, Sanna Stella traces her illness back to a cold, in this case bronchitis, that she came down with nearly 10 years ago.
SANNA STELLA: Within a month, I was unable to make it, really, from the sofa to the dining room table.
STONE: Eventually, she received her diagnosis, ME/CFS, short for myalgic encephalomyelitis - or chronic fatigue syndrome. Stella resolved to make herself as useful to science as possible, so when she was selected for an intensive study by the NIH, she was all in.
STELLA: The whole thing was pretty tough to do. I mean, after the first four or five days, I could only get to testing on a stretcher.
STONE: A pool of more than 200 patients was painstakingly narrowed down to only 17. The aim was to take the most detailed snapshot ever of the biological underpinnings of the illness. Now the findings are out.
AVINDRA NATH: It involves the brain, the gut, the immune system, the autonomic nervous system.
STONE: Dr. Avindra Nath is at the National Institute of Neurological Disorders and Stroke.
NATH: And the illness itself cannot be explained by deconditioning or psychological factors because we excluded patients who had those kinds of confounding problems.
STONE: The research stands out because of how deeply it probes the illness. There were biopsies, hours spent in tightly controlled metabolic chambers. Cutting-edge technology turned up irregularities in the immune system. In spinal fluid, the team found low levels of molecules that regulate the nervous system and link that to cognitive and physical symptoms.
NANCY KLIMAS: It was an amazing study.
STONE: Dr. Nancy Klimas studies ME/CFS at Nova Southeastern University in Florida.
KLIMAS: As thorough an evaluation as has ever been delivered (laughter) in any clinical study that I know of in any disease.
STONE: The NIH team Made all its data available, which will provide plenty of fodder for future research. Klimas says one key takeaway...
KLIMAS: That this is a disease that comes from the brain.
STONE: The study took years to complete, one reason was the COVID-19 pandemic. Dr. Lucinda Bateman runs the Bateman Horne Center in Utah, which treats patients with chronic fatigue syndrome. She applauds the work but notes the limitations.
LUCINDA BATEMAN: These patients aren't necessarily as sick as many ME/CFS patients.
STONE: In one experiment, the team used brain imaging to show a certain region was not as active when patients with ME/CFS were completing a physical task. Dr. Anthony Komaroff at Harvard Medical School and Brigham and Women's Hospital found this intriguing.
ANTHONY KOMAROFF: It's like they're trying to swim against a current.
STONE: Komaroff says the study also turns up lots of evidence of chronic activation of the immune system.
KOMAROFF: As if the immune system was engaged in a long war against a foreign microbe, a war it couldn't completely win and therefore had to continue fighting.
STONE: This is one prominent hypothesis, both for chronic fatigue syndrome and long COVID, that there's an antigen, something the immune system can't clear. Maureen Hanson at Cornell University studies this line of evidence that was also seen in the NIH study. She says a chronic infection can lead to inflammation and immune dysfunction, including a problem with part of the immune system known as T cells.
MAUREEN HANSON: So you have what's called T cell exhaustion if you're continuously exposed to an antigen.
STONE: The study's authors suggest that drugs called checkpoint inhibitors could be tested for ME/CFS. Hanson says future research needs to focus on treatments.
HANSON: It's really imperative to start doing clinical trials for people who have been sick for decades.
STONE: And she hopes this study brings new urgency.
Wil Stone, NPR News.
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