Too often, doctors don't understand chronic fatigue syndrome. They don't know how to diagnose it, and they frequently even believe that patients with the disease are just whining or suffering from psychological problems. This needs to change.
That was the message from the Institute of Medicine's recent report on the illness, which proposed new criteria to diagnose it and recommended ditching the syndrome's confusing and demeaning name. The proposed alternative: systemic exertion intolerance disease, or S.E.I.D.
As a patient for 16 years, I've dealt with plenty of doctors who were ignorant about the disease. So my questions were: Will this work? Is a report from one of the most prestigious bodies in American medicine, an arm of the National Academy of Sciences, enough to make doctors take the disease seriously? Will patients get diagnoses faster and be treated more effectively?
Early indications are discouraging. An article about the report on Medscape, a website for doctors, received 273 comments as of Tuesday, and most were dismissive. Here are a few examples:
• "Absent hard biological evidence, Chronic Fatigue Syndrome might" count "lots of people as 'Sick' who are in monotonous jobs, bad marriages, or plain bored with life."
• "great, disability here I come! glad I got that plan a long time ago."
• "Chronic fatigue and fibromyalgia — two wastebasket diagnoses in search of pathology."
The nearly 300-page report explicitly argued against these sentiments with a thorough review of the scientific literature. It pointed out that chronic fatigue (the condition of being tired all the time) and chronic fatigue syndrome (an illness in which exhaustion is just one of many debilitating symptoms) are very different.
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