番茄社区

The Institute of Medicine (IOM) is calling for wider recognition of the condition commonly referred to as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), offering new diagnostic criteria and arguing in favor of a new name.

The proposed diagnostic criteria, set out in entitled "Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness," require that a patient have "a substantial reduction or impairment in the ability to engage in pre-illness level of occupational, educational, social, or personal activities that persists for more than 6 months."

This impairment also must be accompanied by fatigue that typically is profound and is not eased by rest. The diagnosis also requires "postexertional malaise" and unrefreshing sleep.

In addition, the patient also must report cognitive impairment, usually slow information processing, or orthostatic intolerance, with worsening of symptoms in the upright position.

The final recommendation specified that the disorder should be renamed "systemic exertion intolerance disease," or SEID, a term that should replace ME/CFS.

The IOM was asked by the U.S. Department of Health and Human Services (DHHS), the NIH, the Social Security Administration, the FDA, the CDC, and the Agency for Healthcare Research and Quality to examine the evidence and develop evidence-based clinical diagnostic criteria. The agencies also asked IOM to determine whether the condition should be given a new name that more clearly describes the condition.

The IOM report states that ME/CFS is a serious, multisystem, debilitating disorder that afflicts millions but that often is met with skepticism from healthcare providers.

In a webcast presenting the report, committee chair , of Vanderbilt University in Nashville, Tenn., said that the condition is "radically underdiagnosed -- probably only 10% of cases are diagnosed." The literature suggests that the possible numbers range from 836,000 and 2.5 million in the U.S. alone.

This problem of underdiagnosis was emphasized in a commentary published in Annals of Internal Medicine by , of the University of Florida in Miami.

"Although these patients have severe disability, many clinicians misdiagnose -- and, unfortunately, sometimes dismiss -- the condition as a psychological problem. This may be because many clinicians believe there is no objective evidence of pathology," wrote Ganiats, who was a member of the committee.

"The disease has a psychological impact on people. It is a terribly frustrating diseases, but at the core is a physical problem, not a psychological one," he told 番茄社区.

The report makes several specific recommendations. The first is that physicians should make the diagnosis if the criteria are met during a history, physical examination, and targeted medical work-up. In addition, a new ICD-10 code should be designated.

The second recommendation was that the DHHS "should develop a toolkit appropriate for screening and diagnosing patients ... in a wide array of clinical settings," including primary care, subspecialty services such as rheumatology and neurology, and mental/behavioral health clinics.

"This disease can and should be diagnosed by any clinician," Ganiats stated.

It also should be recognized that many patients have comorbid conditions, including fibromyalgia, irritable bowel syndrome, and depression, that also should be diagnosed and treated, according to the report.

The third recommendation called for a re-examination of the diagnostic criteria within 5 years to determine whether modification is needed based on the rapidly changing science.

"It is encouraging to note that progress is already being made in understand the etiology, natural history, pathophysiology, and effective treatments of ME/CFS using a variety of physiological and molecular methods," the report stated.

This ongoing research should therefore help further refine the diagnostic criteria and identify "clinically pertinent subtypes."

As for the potential name change to SEID, the latter is more appropriate "because it focuses on what the central feature of the disease is. This is what these patients experience," Clayton said.

In his commentary, Ganiats noted that various potential causes for the disorder have been suggested and discussed, including viral infections, immune impairment, and neuroendocrine abnormalities.

For instance, he pointed out, the committee found evidence for as well as for the condition developing following .

He concluded that "a new name by itself will not improve the lives of people with systemic exertion intolerance disease. Improved knowledge and acceptance among clinicians, in addition to an enhanced research agenda, will go far to bridge the gap between current practice and helping persons with this condition."