Your Syndrome’s Missing Benefit

The primary message of this report is that ME/CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients. In its most severe form, this disease can consume the lives of those whom it afflicts. It is ‘real.’ It is not appropriate to dismiss these patients by saying, ‘I am chronically fatigued, too.’

Not long after its release, the report was fodder for a poignant New York Times column in which the author, a professional science writer, reveals that she has suffered the condition for the past 16 years…

The challenge of living with a syndrome confronts millions of Americans. Roughly 1 percent to 2 percent of the U.S. population, or some 4 million people, have fibromyalgia. Chronic fatigue syndrome affects approximately another million. As many as 50,000,000 of us have irritable bowel syndrome. Nearly 40,000,000 women have premenstrual syndrome. Interstitial cystitis plagues some 700,000 women, and nearly 28 million adults in the U.S. have a migraine headache syndrome.

If you are a member of the enormous population that suffers from one or more syndromes, you can get good medical care. But you may have to work extra hard to do so, and you, too, are apt to suffer the addition of insult to your injury along the way…

But perhaps the most important difference of all between disease and syndrome is the legitimacy attached to them. The lack of confirmatory test results for a syndrome means that there is nothing to “clinch” the diagnosis. Because the causes of syndromes are unknown, treatment is often uncertain, too, and results often less than gratifying…

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