Troubles of Chronic Fatigue Syndrome Start With Defining It

By DAVID TULLER
Published: March 4, 2011

When reports emerged 30 years ago that young gay men were suffering from rare forms of pneumonia and cancer, public health investigators scrambled to understand what appeared to be a deadly immune disorder: What were the symptoms? Who was most susceptible? What kinds of infections were markers of the disease?

They were seeking the epidemiologist’s most essential tool — an accurate case definition, a set of criteria that simultaneously include people with the illness and exclude those without it. With AIDS, investigators soon recognized that injection-drug users, hemophiliacs and other demographic groups were also at risk, and the case definition evolved over time to incorporate lab evidence of immune dysfunction and other refinements based on scientific advances.

Once a disease can be diagnosed reliably through lab tests, creating an accurate case definition becomes easier. But when an ailment has no known cause and its symptoms are subjective — as with chronic fatigue syndrome, fibromyalgia and other diseases whose characteristics and even existence have been contested — competing case definitions are almost inevitable.

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