NIH Tackles Neglected Mystery Illness

It has been more than seven months since the National Institutes of Health pledged increased funding for myalgic encephalomyelitis/chronic fatigue syndrome research. Here is how some of that money will be put to use.

Written byTanya Lewis
| 4 min read

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NIH Clinical Center, Bethesda, MarylandWIKIMEDIA, CHRISTOPHER ZIEMNOWICZHundreds of thousands of people suffer from an illness that causes them to feel overwhelming fatigue that doesn’t improve with rest, joint and muscle pain, problems sleeping, and mental fogginess, all of which can severely disrupt their lives. Known as myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS), the condition affects more than 1 million people, according to the US Centers for Disease Control and Prevention, representing an economic burden of up to $7.2 billion.

For decades, physicians and scientists dismissed what’s now typically called ME/CFS as trivial or psychosomatic, a fact not helped by its unknown cause and broad set of associated symptoms. Meanwhile, diagnostic tests and treatments have remained out of reach.

But last fall, the National Institutes of Health (NIH) announced an effort—prompted by an Institute of Medicine report—to reinvigorate research on what NIH Director Francis Collins called “one of the most challenging . . . human illnesses that science has yet to unravel.” The NIH funding commitment involves an intramural study on ME/CFS and the reinvigoration of a multi-agency working group led by researchers at the National Institute of Neurological Disorders and Stroke (NINDS).

“Historically, the NIH has ignored this illness for a long time, and ...

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