Pain meets politics in focus on chronic fatigue

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Maligned as the ‘yuppie flu’
Chronic fatigue syndrome is characterized by at least six months of severe fatigue not helped by bed rest. Patients also report muscle pain and impaired memory. The CDC estimates more than 1 million Americans have the condition, with the rate four times higher among women.

It became a national health issue in 1984, when clusters of cases were reported in Incline Village, Nev., and in Lyndonville, N.Y.

Similar reports came in from around the country, although scientists believe the illness probably existed before then but wasn’t recognized.

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One challenge is that chronic fatigue syndrome doesn’t have observable symptoms, said Laura Hillenbrand, a journalist who wrote the best-selling book “Seabiscuit” and who has been diagnosed with the illness.

“I have definitely gotten a raised eyebrow and a ‘You look fine!”’ said Hillenbrand, 39.

Chronic fatigue syndrome came to be known as “yuppie flu,” because many of the sufferers were white, educated and relatively affluent.

Several key members of Congress took it seriously, though, including Harry Reid, the Democratic Senate majority leader, who was a Nevada congressman when the Incline Village cluster was reported.

Another was John Porter, an Illinois Republican on the House Appropriations subcommittee that oversees public health programs and agencies. Porter became involved when a constituent, Chicago-area philanthropist Ted Van Zelst, visited and told Porter about his daughter’s mystery illness. In 1987, Van Zelst became the first person to testify before Congress requesting research money for chronic fatigue.

At about the same time, a small organization formed in Charlotte, N.C., that became the nation’s most influential chronic fatigue advocacy group — the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America.

The group was influenced by AIDS activists, who in the 1980s eschewed gentle advocacy for hard-nosed politicking and government watchdogging. But the CFIDS Association had a tougher challenge: Their syndrome doesn’t shorten lives, there’s no proof it’s infectious, and many doctors refused to take it seriously. It was unexplained, yes, but not fatal — more like a Nancy Drew mystery than an Agatha Christie.

A tepid response to chronic fatigue
At the CDC, the investigation was placed in the division responsible for deadly infections like influenza and rabies. The response there to chronic fatigue was tepid, said Dr. William Reeves, who now heads the CDC’s chronic fatigue syndrome research.

“They deal with acute infectious agents that make people dead. That was the mind-set,” he said.

The CFIDS Association, led by Kim McCleary, applied pressure by becoming a part of the government apparatus. Heeding congressional requests, federal officials in 1995 gave advocates a place on a U.S. advisory committee on chronic fatigue syndrome. It was a turning point, because the 5-year-old panel previously was populated only by scientists and government officials.

It was at one of the panel’s meetings in 1998 that CDC’s misuse of chronic fatigue funding was exposed.

McCleary pressed a CDC official on how the chronic fatigue money was being spent, and Reeves emerged as a whistleblower who refused to back up his boss, Dr. Brian Mahy. Mahy contended $6 million had been spent on the disease in the prior year as Congress requested.

But Reeves had complained to Mahy that chronic fatigue efforts were not getting the money Congress intended.

“It was basically, ‘Go out there and lie for me,”’ Reeves said in a recent interview. “I just basically said ’No.”’

Mahy, who still works at CDC, declined to comment for this article.