IOM wants to give 'chronic fatigue syndrome' a new name

Critics say patients want a name that acknowledges a physical basis for the disease

A 15-memeber panel of the Institute of Medicine (IOM) on Tuesday proposed changing the name of "chronic fatigue syndrome" to "systemic exertion intolerance disease" in order to more accurately reflect the nature of a disease that more than 2.5 million Americans are believed to have.

The IOM panel was convened at the request of HHS, CDC, FDA, and other federal agencies.

Background on 'chronic fatigue'

According to the report, the old name—which was chosen in 1988—"has done a disservice to many patients" because it tends to "elicit very trite comments" about exhaustion. For instance, some patients say that have been accused of making up or exaggerating their symptoms and that some physicians have refused to view the ailment as more than a psychological issue.

In addition, many individuals with the disease say their diagnoses were extremely delayed, with as many as 77% noting it took more than one year to receive a diagnosis and nearly 30% saying it took longer than five years.

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Peter Rowe, a member of the panel and a pediatrician at Johns Hopkins, says, "We wanted to move away from this label" that can spur commentary "like 'I'm tired, I must have that too.'" He adds, "Everybody's had some experience of fatigue, but this is so much more than that."

Details of the new name

Experts say the proposed name more accurately describes a key component of the ailment: The inability to tolerate both physical and mental exertion for an extensive period of time without "post-exceptional malaise."

Specifically, the new diagnostic criteria include six months of significant, unexplained fatigue, post-exceptional malaise, and unrefreshing sleep. The new recommendations are not binding, but could still impact how physicians diagnose and treat the disease.

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However, critics say the name change will anger patients, who prefer the name "myalgic encephalomyelitis," (M.E. /C.F.S.) because it denotes a physical basis for the condition.

DePaul University professor Leonard Jason says, "The committee has come up with a name without vetting it and they will basically get a tremendous amount of discontent and dissatisfaction right from the starting point, because the patients want something very different."

The authors of the IOM report contend that M.E. /C.F.S. "does not accurately describe the major features of the disease" because muscle pain and inflammation of the central nervous system are not integral components of the condition (Tuller, "Well," New York Times, 2/10; Bernstein, "To Your Health," Washington Post, 2/10).

The takeaway: An IOM panel says "systemic exertion intolerance disease" better represents the symptoms of a disease long known as "chronic fatigue syndrome," but some patients say the new name doesn't do enough to emphasize the physical causes of the condition.

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