Less than one-third of medical school curricula and less than half of medical textbooks include information about myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). This dearth of available information has led to confusion about the disease among health care professionals, including how to diagnose and treat patients with the condition, which has delayed diagnoses and led to inappropriate management of patients' symptoms.
In response, the Institute of Medicine (IOM) convened an expert committee to examine the evidence base for ME/CFS, which it explored in a Feb. 10 report(www.nationalacademies.org) that proposed new diagnostic criteria for and changing the name of the condition to systemic exertion intolerance disease (SEID).
Key Report Findings
The committee said in the report that naming the condition SEID captures the fact that with this disease, exertion of any sort -- physical, cognitive or emotional -- can adversely affect patients in many organ systems and also in many aspects of their lives.
- The Institute of Medicine (IOM) released a Feb. 10 report proposing new diagnostic criteria for the condition commonly known as chronic fatigue syndrome, as well as renaming it systemic exertion intolerance disease.
- Co-author and family physician Theodore Ganiats, M.D., wrote a companion piece to the study in which he broke down the key elements of the group's research.
- Ganiats recommended that family physicians interested in quickly getting up to speed on the findings and suggested changes reference the IOM's 20-page Report Guide for Clinicians.
The group offered the following criteria for diagnosing SEID:
- a substantial reduction or impairment in the ability to engage in pre-illness levels of occupational, educational, social or personal activities that persists for more than six months and is accompanied by fatigue, which is often profound, of new or definite onset (not lifelong), not the result of ongoing excessive exertion and not substantially alleviated by rest;
- post-exertion malaise; and
- unrefreshing sleep.
At least one of two manifestations -- cognitive impairment or orthostatic intolerance -- also is required.
Family Physician Co-author's Take
Study co-author Theodore Ganiats, M.D., of the Department of Family Medicine and Community Health in the Miller School of Medicine at the University of Miami, wrote a companion piece(annals.org) to the study in which he broke down the key elements of the group's research.
He told AAFP News that ME/CFS has been ignored or mismanaged by clinicians in the past because some doctors don't consider it a real disease; other times, it's simply misdiagnosed. Regarding the latter, Ganiats said that just as hypertension and diabetes may be missed during a clinical visit, ME/CFS can be misdiagnosed for a variety of reasons.
"Plus, there are many diagnostic strategies (for ME/CFS) out there, so it is confusing to doctors," he said. "We hope that the IOM strategy, based in evidence and simpler, will facilitate the diagnostic process."
Ganiats pointed to elements of the diagnostic criteria the IOM committee created that provide evidence that ME/CFS is a legitimate disease with a physiological basis.
"One of the three required elements is post-exertion malaise -- there is objective evidence of that," he said. "A person without the disease will perform about the same on exercise tests done on successive days. However, a person with this disease will perform much worse on the second day, even when putting out the same, maximal effort."
He added that one of the two additional criteria is autonomic dysfunction -- specifically, orthostatic intolerance, which can also be measured objectively.
Researchers also found pretty good evidence that many patients with ME/CFS have immune dysfunction.
"For example, natural killer cell count and cytokine production can be altered," Ganiats said. "The reason this is important is twofold. First, it gives insight into a possible mechanism for the disease. Second, it provides the hope for a biomarker for the disease. However, at this time, none of the changes are sufficiently specific for it to be used as a biomarker. As such, research in this area continues."
Ganiats said the IOM committee agreed collectively that the term "chronic fatigue syndrome" can result in stigmatization and trivialization and should no longer be used as the name of this illness.
"Patients don't like the disease, and physicians now have the wrong idea about it," he said. "By changing the name, we emphasize that the IOM has looked at the evidence and sees that the name is misleading."
Ganiats recommended that family physicians interested in quickly getting up to speed on the findings and the committee's suggested changes reference the 20-page IOM's Report Guide for Clinicians,(www.nationalacademies.org)
which summarizes the full 255-page report.
More From AAFP
American Family Physician: "Chronic Fatigue Syndrome: Diagnosis and Treatment"