IOM report calls for new criteria, new name for chronic fatigue syndrome

ME/CFS, or what will now be termed systemic exertion intolerance disease (SEID) under the new recommendations, affects between 836,000 and 2.5 million Americans, but it is likely that only about 10% receive a diagnosis, she said, noting that those patients who do receive a diagnosis often struggle for years beforehand.

“They often face a really frustrating process,” she said, explaining that clinicians frequently dismiss their concerns.

The commonly used term “chronic fatigue syndrome” perpetuates misunderstanding of the illness, as well as the dismissive attitudes from health care providers and the public.

“It’s clear [the term] chronic fatigue syndrome does tremendous disservice to patients. If I don’t hear another person say to me, ‘I’m chronically fatigued, too.’ or ‘Is this a real disease?’ it won’t be too soon. We’ve got to get over this one,” Dr. Clayton said.

The term myalgic encephalomyelitis also fails to describe the essence of the disorder, she said.

SEID, conversely, describes the central element of the disorder, she explained.

As for the need for a new ICD-10 code, the recommendation was made to ensure that “we’re not stuck with benign ME or CFS,” Dr. Clayton said.

“This needs its own diagnostic criteria, which will be helpful not only for patients, but frankly for the research enterprise going forward,” she said.

She and her colleagues believe the new name, along with the new criteria, will “provide a clear path for clinicians to make the diagnosis.”

“It’s a fresh start. … the diagnostic criteria are evidence-based, which means they will be very convincing to physicians, and I think that people will be able to start to see this illness. We wanted to be sure that symptoms that may have been previously overlooked by clinicians are put front and center in this diagnosis. I think it will make a very big difference not only for primary care, but also for specialists,” said Dr. Lucinda Bateman, committee member and director of the Fatigue Consultation Clinic in Salt Lake City.

The committee called for additional research on the etiology and pathophysiology of the disease, as well as on potential treatments, and for reassessment of the diagnostic criteria within 5 years or sooner if emerging evidence warrants earlier modifications.

The IOM report was sponsored by the Office on Women’s Health within the U.S. Department of Health & Human Services, the National Institutes of Health, the Centers for Disease Control and Prevention, the U.S. Food and Drug Administration, the Agency for Healthcare Research and Quality, and the U.S. Social Security Administration.

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