The Clinical Center’s Dr. Harvey Alter participates in the recent workshop on chronic fatigue syndrome.

NIH recently convened a workshop on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research on campus. About 75 percent of individuals with this disease recall a dramatic and abrupt change in their health status following a viral-type illness. After feeling fine one day, they wake up the next unable to move, sensitive to loud noises, dizzy when standing and suffer severe headaches. They can’t sleep, have muscle aches, report foggy brains and suffer a debilitating, ongoing and relentless fatigue akin to that experienced with cancer or flu.

However, as is the case with many complex, chronic diseases, a lack of consensus on a case definition and heterogeneity in the patient population is deterring accurate identification of ME/CFS. Diagnosis can take years while symptoms typically devastate the lives of patients and their loved ones. No cure exists for ME/CFS, which is found in about two to four times as many women than men and affects roughly 1 million to 4 million people of all ages, races and ethnic groups in the U.S.

To the frustration of patients and public health officials, the causes of ME/CFS have eluded investigators for more than 35 years. Several virologists highlighted the controversy on the potential association of a retrovirus, XMRV, with ME/CFS, and presented data on the possible role of enteroviruses or herpes viruses in the etiology of the disease. Without known causes, research on ME/CFS has mainly focused on the pathophysiology of the ailment related to immune and neuroendocrine dysfunctions.

Participants at the workshop learned how new systems biology approaches are revealing striking similarities and differences among ME/CFS patients. Still, treatment for these patients is limited to symptom management until a better understanding of the causes is determined.

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