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Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a debilitating multisystem disorder from which adults rarely recover. Researchers have struggled to find changes in the body that underlie the illness, which often appears following an infection, partly because it may arise in different forms. Now, scientists at the National Institutes of Health (NIH) have completed perhaps the most comprehensive study of ME/CFS to date by examining a carefully selected group of participants. In the study, which was published today in Nature Communications, the researchers observed changes that reveal how the disease disrupts the immune and nervous systems.

In addition to having overwhelming fatigue, people with ME/CFS experience a range of other symptoms such as brain fog, hypersensitivity to light, and short-term memory loss. Medical professionals have historically dismissed the condition as a psychosomatic disorder by implying the disease lacks a physiological basis.

These dismissive views have held back ME/CFS research, and scientists have made little progress toward developing diagnostics and therapies and understanding the mechanism behind the condition. In recent years some progress has been made in accepting ME/CFS as a real physiological condition, in part because of the emergence of long COVID (a condition that, according to some studies, qualifies for an ME/CFS diagnosis about half of the time). But doubt over its legitimacy lingers. Alison Sbrana, a person with ME/CFS who was a participant in the new study, says that she would be shocked to meet someone with ME/CFS who hasn’t had their concerns brushed aside at some point.

Avindra Nath, a neurologist at NIH, set out to unravel the condition’s inner workings. First, his team had to carefully select a cohort of ME/CFS participants for the study because the condition has numerous forms that might not share the same physiological manifestations. The researchers focused on a subset of people with ME/CFS who had developed the condition following an infection (before the COVID pandemic). They homed in on this group by pursuing a rigorous selection process, and they only included participants whom a panel of five clinicians unanimously agreed met the criteria. Only 17 ME/CFS participants remained after the selection process, alongside 21 healthy volunteers. With its carefully selected cohort, Nath’s team employed a slew of tests to study several body systems.

.Credit:  Jorm Sangsorn/Getty Images

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