An institute panel recommended that the illness be renamed “systemic exertion intolerance disease.” The term reflects what patients, clinicians and researchers all agree is a core symptom: a sustained depletion of energy following minimal activity, called post-exertional malaise.
The new name “really describes much more directly the key feature of the illness, which is the inability to tolerate both physical and cognitive exertion,” said Dr. Peter Rowe, a member of the panel and a pediatrician at Johns Hopkins who treats children with the condition.
The Institute of Medicine panel was convened at the request of the Department of Health and Human Services, the Centers for Disease Control and Prevention, the Food and Drug Administration and other federal agencies.
The new recommendations are not binding, but they are likely to influence diagnosis and treatment of the disease.
An alternate name for the illness, myalgic encephalomyelitis, meaning “brain and spinal cord inflammation with muscle pain,” was coined decades ago. Many experts now refer to the condition as M.E./C.F.S.
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