New York Times blogs, report by David Tuller, 10 February 2015.
The Institute of Medicine on Tuesday proposed a new name and new diagnostic criteria for the condition that many still call chronic fatigue syndrome.
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.
About one million people in the United States are believed to have the syndrome. Many say they have been accused of imagining or exaggerating their symptoms, and many doctors have long viewed it as a psychological illness.
Patients attribute much of their mistreatment to the name “chronic fatigue syndrome,” chosen by the disease centers in 1988.
“We wanted to move it away from this label that often elicits very trite comments, possibly intended to be humorous, like ‘I’m tired, I must have that too,’ ” Dr. Rowe said. “Everybody’s had some experience of fatigue, but this is so much more than that.”
Leonard Jason, a psychology professor at DePaul University in Chicago and an expert on the illness, predicted that patients would be reluctant to accept the new name.
“The committee has come up with a name without vetting it,” said Dr. Jason. “And they will basically get a tremendous amount of discontent and dissatisfaction right from the starting point, because the patients want something very different.”
Many strongly prefer myalgic encephalomyelitis, because it underscores a physical basis for the condition.
The authors of the new report agreed that the term chronic fatigue syndrome “has done a disservice to many patients,” but said that myalgic encephalomyelitis “does not accurately describe the major features of the disease.”
Although some research has suggested that inflammation of the central nervous system is involved, its role is not proven, and muscle pain is not as prominent as other features.
Most patients develop the syndrome after contracting a cold, flu or other viral illness, but other environmental or toxic exposures may act as triggers. Although no cause has been identified, people with the illness may suffer neurological, hormonal and immunological impairments.
The new diagnostic criteria include six months of profound, unexplained fatigue and post-exertional malaise, as well as a third key symptom: unrefreshing sleep. Patients must also exhibit cognitive problems or “orthostatic intolerance,” an inability to stand upright for more than a short period.
Developing diagnostic criteria is easiest when medical tests can be used, as with HIV or hepatitis C, and much harder when an illness must be defined by its symptoms. Researchers and clinicians have developed at least 20 different definitions over the years for ME/CFS.
The most commonly used has been the C.D.C.’s definition, but many researchers and clinicians complain that those criteria identify many patients who more likely are suffering from depression and other conditions that can cause prolonged fatigue.
The new report is one of two studies that have been the focus of intense debate among patients with ME/CFS. The National Institutes of Health is currently revising a draft report about research priorities for the illness.
Patients have sharply criticized both efforts.
Although the I.O.M. panel’s 15 members included some clinicians with strong experience in treating patients with ME/CFS, a majority were not known to have any expertise in the illness.
Before the panel began deliberations, dozens clinicians and researchers signed a letter declaring that a case definition developed by an international committee of experts in 2003 should be the basis of any discussion.
That definition included multiple symptoms, but some clinicians complained it was difficult to apply in practice.
READ THE REPORT
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness
Released:February 10, 2015
Report at a Glance
– Presentation (PDF)
– Report Brief (PDF)
– Key Facts (PDF)
– Diagnostic Algorithm (HTML)
– Proposed-Diagnostic-Criteria (HTML)
Download an introductory slide for this report >>
Between 836,000 and 2.5 million Americans suffer from myalgic encephalomyelitis/chronic fatigue syndrome—commonly referred to as ME/CFS. This disease is characterized by profound fatigue, cognitive dysfunction, sleep abnormalities, autonomic manifestations, pain, and other symptoms that are made worse by exertion of any sort. ME/CFS can severely impair patients’ ability to conduct their normal lives.
The Department of Health and Human Services (HHS), the National Institutes of Health, the Agency for Healthcare Research and Quality, the Centers for Disease Control and Prevention, the Food and Drug Administration, and the Social Security Administration asked the Institute of Medicine (IOM) to convene an expert committee to examine the evidence base for ME/CFS. In Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness, the
committee proposes new diagnostic criteria that will facilitate timely diagnosis and care and enhance understanding among health care providers and the public.