A committee convened by the Institute of Medicine (IOM) proposed a new name for a condition known variously as chronic fatigue syndrome or myalgic encephalomyelitis. The new name unwieldy: systemic disease effort intolerance, or Minion. In a report published today, the committee also suggests a new set of diagnostic criteria for Minion.
Having reviewed more than 9,000 scientific studies, hear expert testimony, and solicit public comments, 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 describes the main features of the disease."
There are at least 20 sets of diagnostic criteria, the Committee noted that confused patients, clinicians and their families and researchers studying the disease. The proposed diagnostic criteria are more focused on "core symptoms" as a reduced capacity or with disabilities to work and study, malaise after exercise, and sleep "unrefreshing". The report, "Fatigue Syndrome Beyond Myalgic Encephalitis / chronic: Redefining disease," runs 235 pages
Peter Rowe, who heads the chronic fatigue clinic the. S Johns Hopkins Children Center in Baltimore, Maryland, and was one of 15 members, had praise for the process and product. "This report is phenomenal," said Rowe, noting that it had unanimous support. "It has the best summary of the evidence that I have ever read." The US Department of Health and Human Services and the 'social security administration sponsored the study and the IOM report.
systemic intolerance disease effort does not exactly roll on the tongue. Committee member of the IOM Ronald Davis, a biochemist who heads the genome center at Stanford University in Palo Alto, California, said the group considered some 100 options. "Boy, did we struggle with that," he said. "it is difficult to find a good name, and I do not think it's a perfect name. "
But Davis believes that its essential to eliminate chronic fatigue syndrome. "My son is sick, and when I tell people, they say, 'I had that once, because they were tired once," he said. "ME is a better name, but n 'there is no real data that match the name. "
Davis hopes the report will convince all clinicians they can diagnose the disease and it is real." I will hope get rid of those who can not believe, "said Davis. "They're going to keep it for themselves. It is the incompetence and it is malpractice."
The new diagnostic criteria are based on the so-called consensus criteria in Canada to first put forward in 03. But the report offers a simple separate definition that focuses on "the central element of this disorder," said President Ellen Wright Clayton of the committee to "public dissemination event" held at IOM this morning. "The essence of this disorder is that if patients with this disorder are involved in the effort - cognitive, emotional, physical, whatever - that their symptoms are made much worse and often for an extended period of time, "said Clayton, professor of law at Vanderbilt University in Nashville. the name, she said, is a reflection." We want to name what it is, " she says. "This is what the patient experience."
The committee was "struck by the relative scarcity of research" that disappeared in Minion. "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 affected, "the report said. (He cited estimates say between 836,000 and 2.5 million Americans chronic or ME fatigue syndrome, but Davis points out that some popular diagnostic criteria have definitions too liberal for the condition.)
the report recommends a multidisciplinary committee reviews the diagnostic criteria Minion within 5 years. Rowe said they may want to review the name, too. "We do not think it's going to be the name forever, but it is a step forward," he said.
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