by MIRIAM E. TUCKER
If the prestigious Institute of Medicine pays attention to your disease, that’s usually considered a good thing. But some patients with chronic fatigue syndrome fear that the review of the condition by the institute, an independent organization that advises the government on health issues, might perpetuate the widespread belief that their condition is purely psychological.
The controversy begins with the name. Everyone experiences fatigue, and lots of people are tired most of the time. But long-standing fatigue is just one of many debilitating symptoms.
“There are many people — scientists, clinicians, advocates — who believe the name ‘chronic fatigue syndrome’ does harm to patients,” said Dr. Nancy Lee, a deputy assistant secretary in the Department of Health and Human Services. “I agree.” Lee spoke at a meeting Monday in Washington, D.C., to launch the IOM review.
That harm includes trivializing the condition and a chilling effect on high-quality research, patients say. A far more serious-sounding name, myalgic encephalomyelitis, is used in other parts of the world and is increasingly being adopted in the United States. For the review, both the IOM and HHS are referring to the condition as “ME/CFS.”
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