An Institute of Medicine committee chaired by Vanderbilt University’s Ellen Wright Clayton, M.D., J.D., on Tuesday called for a new name and new diagnostic criteria for what is familiarly known as chronic fatigue syndrome.
As many as 2.5 million Americans suffer from debilitating symptoms of what has been called myalgic encephalomyelitis/chronic fatigue syndrome, the committee said in its report. The economic cost in lost productivity and medical expenses approaches $24 billion a year.
Yet because the syndrome is poorly accepted and poorly understood, most patients are never diagnosed, Clayton wrote in a column posted Tuesday by the Journal of the American Medical Association. They shouldn’t “wander around in the wilderness for years trying to get a diagnosis,” she told the Associated Press.
The committee recommended a new name — Systemic Exertion Intolerance Disease or SEID — and described three core symptoms: impaired day-to-day function; worsening of symptoms after physical, cognitive or emotional activity; and unrefreshing sleep.
Either cognitive impairment or orthostatic intolerance (symptoms occurring on standing that are improved by lying down) also must be present. Patients should experience moderate or more severe symptoms at least half the time for at least six months to distinguish the condition from other diseases.
Clayton, the Craig-Weaver Professor of Pediatrics and professor of Law, noted in her column that “making the diagnosis is essential for providing appropriate care … Effective symptom management is often available, whereas the wrong interventions can make symptoms worse.”
The committee also called for more research. “This opportunity must be seized,” Clayton wrote. “These patients, who for too long have received inadequate attention in research and clinical settings, deserve better.”
A member of the Institute of Medicine of the National Academies since 2006, Clayton has served on 10 report committees, chairing four, and in 2013 was awarded the institute’s David Rall Medal for “exemplary” service.
