The Wall Street Journal and the New York Times do an excellent job of running several stories on ME/CFS throughout the year. I wanted to post a few excerpts and links to three recent articles that were just out by these two popular papers.
The Puzzle of Chronic Fatigue
One snowy afternoon in October 1985, eight children from the tiny farming community of Lyndonville, N.Y., went sledding together. Within a few weeks, they all got sick. David Bell, the local doctor who treated the children, recalls that their symptoms were similar to the flu: sore throats, fevers, muscle aches and severe fatigue. After three days, they hadn’t recovered. Then a week. A month. Ninety days. Six months after their sledding trip, the children still couldn’t go back to the lone school in town. They had trouble getting out of bed. Light gave them a headache. Four of the eight were so sick that they were essentially disabled, Dr. Bell recalls. Tests ruled out mono and other infections. “We had no idea at all what it was,” he says.
An Illness That’s Hard To Live With—Or Define
In 1990, after a bout with mononucleosis, I contracted chronic fatigue syndrome. For month after month, I felt as if I had the worst case of the flu, and I had little stamina to do even the most basic life activities. I had to leave my work as a psychology professor for a year and a half. I was lucky to have a strong support system and an understanding work setting—something many other patients don’t have—but I discovered just how mysterious and frustrating the illness is. I also realized how easy it is for people to confuse the experience of everyday tiredness with the incapacitating illness known as CFS.
Troubles of Chronic Fatigue Syndrome Start With Defining It
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.
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