Board Changes Name of Chronic Fatigue Syndrome

by Kristin Thorson, Fibromyalgia Network Editor
Posted: March 15, 2007

Chronic fatigue syndrome (CFS) patients have fought for 10 years to get the name of their condition changed. Finally, at the International Association for CFS conference, which was held in Fort Lauderdale, Fla. in January, board members voted to change the name to CFS/ME.

The ME stands for myalgic encephalopathy, meaning that the pain and other symptoms in the muscles (myalgic) are produced by an unspecified malfunctioning in the central nervous system (encephalopathy). Given that several brain imaging studies in patients with CFS (as well as FMS) have shown abnormal changes in brain blood flow and function, the addition of “ME” to the name is appropriate.

The sentiment of CFS patients 10 years ago was that a new name was needed for doctors to take them seriously.

At that time, Kristin Thorson, president of the Fibromyalgia Network and founder of the American Fibromyalgia Syndrome Association (AFSA), served as a patient representative on the government’s Chronic Fatigue Syndrome Coordinating Committee (CFSCC). She was asked to look into the issue of a name change for CFS. “Patients were rightfully clamoring that CFS was a meaningless and trivializing name,” Thorson said. “And they wanted to know what the medical community thought of a name change.”

Thorson sent out 2,700 surveys to physicians and researchers in the Fibromyalgia Network database and received 440 replies. The survey included six short questions about the name change, and one question about how they perceived FMS versus CFS in terms of therapy approaches. Here are some highlights of the 10-year-old survey:

  • The responses from rheumatologists, family physicians, internists, and other medical specialties all tended to be the same.
  • 38% said CFS was not an adequate name, while 54% said it was.
  • 35% percent said the name should be changed, while 43% said NO.
  • 75% said FMS and CFS were overlapping syndromes and this response was the same regardless of whether the physician was a rheumatologist or a family physician.
  • The most frequent comment from the physicians regarding the name change was: “I’d go for it if we knew more about the etiology (cause).” Many expressed that the CFS name was derogatory and a much smaller number thought that the name described the syndrome well.

On the survey, Thorson also asked the physicians how they approached the treatment of fibromyalgia and chronic fatigue syndrome, two diagnostic labels that basically have the same set of symptoms.

“We discovered that the FMS-diagnosed patients were more likely to receive aggressive treatment for their symptoms, while CFS-diagnosed patients were more likely to be told to change their lifestyle and less likely to be prescribed medications,” said Thorson. “I am eager to see how the medical and research communities react to this recent name change. Hopefully it will finally provide patients with the respect and credibility they deserve.”

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