http://journals.lww.com/neurologynow/blog/webextras/pages/post.aspx?PostID=17
Does anyone have access to "Neurology Now" to see the rest of the content mentioned (on the IOM report ) ?
Does anyone have access to "Neurology Now" to see the rest of the content mentioned (on the IOM report ) ?
Chronic Fatigue Syndrome: What’s in a Name?
In the October/November issue of Neurology Now, we dive deep into an Institute of Medicine report on chronic fatigue syndrome. Along with new diagnostic criteria, the report also recommended a new name for the condition. We've asked some experts their opinion of the new moniker.
BY DARRACH DOLAN
What’s in a Name?
The panel of experts convened by the Institute of Medicine (IOM) looked at whether the current names for chronic fatigue—chronic fatigue syndrome (CFS) and myalgic encephalomyelitis (ME)—accurately reflect the symptoms of the disease.
Many people in the CFS community prefer ME because it sounds more “medical” and doesn’t carry the stigma that tends to be associated with CFS. However, many doctors, including Thomas Sabin, MD, FAAN, vice chair of neurology at Tufts University School of Medicine, object to ME. “Myalgic encephalomyelitis” means muscle pain or fatigue caused by inflammation in the brain and spinal cord, but not all people with CFS show signs of inflammation on brain scans, he explains. “I don’t like calling it by a name that has a pathological implication that isn’t true,” he says. While there have been some indications that the syndrome involves inflammation, and Dr. Sabin does believe inflammation is involved, he thinks ME is still clinically incorrect.
Calling it CFS, on the other hand, trivializes the condition, according to many people who have it. Often, doctors and friends say they have fatigue, too, as if all types of fatigue were equal. And CFS is still associated among some with the term “yuppie flu,” which implies that only the privileged can afford to get it and that those who have it are faking it.
For others, the term CFS just doesn’t reflect how the disease affects multiple systems within the body.
Given the ambiguity and imprecision of ME and CFS, the IOM proposed calling the condition “systemic exertion intolerance disease,” or SEID. Susan Levine, MD, an infectious disease and allergy and immunology specialist in New York City, thinks the IOM is on the right track, but Dr. Sabin is on the fence. He prefers the term CFS, if people were to take it more seriously. But he is not against a name change if it will remove the stigma and draw more positive attention to it.
It is unclear whether SEID will become the new name for this complex disease. However, the IOM report points out that having two competing names, CFS and ME, along with the numerous clinical definitions of the disease, makes it more difficult for researchers to compile data and access funding to study it.
While Dr. Levine does not agree with everything in the report, she does believe that a consensus on diagnostic criteria and a single name would help doctors diagnose the condition more easily and encourage more research. Dr. Sabin believes that whether the name is changed or not, the report succeeds in making it “easier for new doctors being trained in medical school to recognize the disease.” And that’s an important first step.