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.
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