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A new report tries to simplify diagnosis of what were called ME/CFS patients and says that cardiopulmonary exercise tests are not necessary.

A new report tries to simplify diagnosis of what were called ME/CFS patients and says that cardiopulmonary exercise tests are not necessary.

Zuma Press Inc./Alamy

Goodbye chronic fatigue syndrome, hello SEID

A committee convened by the Institute of Medicine (IOM) has proposed a new name for a condition known variously as chronic fatigue syndrome or myalgic encephalomyelitis. The unwieldy new moniker: systemic exertion intolerance disease, or SEID. In a report released today, the committee also suggests a new set of diagnostic criteria for SEID.

After reviewing more than 9000 scientific studies, hearing testimony from experts, and soliciting input from the public, the committee concluded that “the name ‘chronic fatigue syndrome’ has done a disservice to many patients,” calling it  “stigmatizing and trivializing.” Myalgic encephalomyelitis (ME), they noted, “does not accurately describe the major features of the disease.”

At least 20 sets of diagnostic criteria exist, the committee noted, which has confused patients, clinicians, and their families, as well as researchers studying the disease. The proposed diagnostic criteria are more focused on “the central symptoms” such as a reduced or impaired ability to work and study, malaise after exertion, and “unrefreshing” sleep.  The report, “Beyond Myalgic Encephalitis/Chronic Fatigue Syndrome: Redefining an Illness,” runs 235 pages.

Peter Rowe, who heads the Chronic Fatigue Clinic at the Johns Hopkins Children’s Center in Baltimore, Maryland, and was one of 15 committee members, had high praise for the process and the product. “This is a phenomenal report,” Rowe said, noting that it had unanimous support. “It has the best summary of the evidence that I’ve ever read.” The U.S. Department of Health and Human Services and the Social Security Administration sponsored the IOM study and report.

Systemic exertion intolerance disease does not exactly roll off the tongue. IOM committee member Ronald Davis, a biochemist who heads the genome center at Stanford University in Palo Alto, California, says the group considered about 100 options. “Boy, did we  struggle with that,” he said. “It’s hard to come up with a good name, and I don’t think this is a perfect name.”

But Davis thinks its essential to do away with chronic fatigue syndrome. “My son is sick with it, and when I tell people, they say, ‘I had that once,’ because they were tired once,” he said. “ME is a better name, but there are no real data that fit the name.”

Davis hopes the report will convince all clinicians that they can diagnose the disease and that it is real. “I hope it will get rid of those who may not believe it,” Davis said. “They’ll have to keep it to themselves. It’s incompetence and it’s malpractice.”

The new diagnostic criteria build on what are known as the Canadian Consensus Criteria, first put forward in 2003. But the report offers a distinct, simpler definition that focuses on “the central element of this disorder,” said committee chair Ellen Wright Clayton at “public release event” held at IOM this morning. “The essence of this disorder is that if patients with this disorder engage in exertioncognitive, emotional, physical, whateverthat their symptoms are made much worse and often for a prolonged period of time,” said Clayton, a law professor at Vanderbilt University in Nashville. The name, she said, reflects this. “We want to name it for what it is,” she said. “This is what the patients experience.”

The committee was  “struck by the relative paucity of research” that has gone into SEID. “Remarkably little research funding has been made available to study the etiology, pathophysiology, and effective treatment of this disease, especially given the number of people afflicted,” the report noted. (It cited estimates that said between 836,000 and 2.5 million Americans have chronic fatigue syndrome or ME, but Davis points out that some popular diagnostic criteria have far too liberal definitions of the condition.)

The report recommends that a multidisciplinary committee review the diagnostic criteria for SEID within 5 years. Rowe says they may want to review the name, too. “We don’t believe it’s going to be the name forever, but it’s a step forward,” he says.