Science or guilt?

The funding for study into the disputed “chronic fatigue syndrome” highlights the role of politics in disease research

ATLANTA (AP) – The television spot shows a 40-year-old woman, in slow motion, as her family and co-workers rush by over the course of a day. It ends with her sitting alone, amid the remnants of a birthday party.

“The worst part isn’t even that everyone thinks the problem’s in my head,” a female voice intones. “The worst part of chronic fatigue syndrome is missing my life.”

The spot is the centerpiece of a remarkable $4.5 million public awareness campaign bankrolled by the U.S. Centers for Disease Control and Prevention. It’s remarkable, in part, because of the role advocacy and politics played in creating it.

Chronic fatigue syndrome is not contagious or life-threatening, and medical skeptics continue to question its merits as a focus for public health. But the money is being spent, in part, thanks to strategic lobbying and congressional interest.

It is not the only example, or the most successful. In 2000, the March of Dimes lobbied Congress to create a center on birth defects within the CDC. In December, advocates – including Autism Speaks, an effective fundraising organization founded by General Electric Co. Vice Chairman Bob Wright – were credited with passage of a bill that targeted nearly $1 billion over five years to research that condition.

But chronic fatigue syndrome paved the way, said Shelley Hearne, former executive director of Trust for America’s Health, a public health advocacy group. She is now a visiting scholar at Johns Hopkins University’s Bloomberg School of Public Health.

In the 1990s, Congress authorized money for CDC to study the cause of chronic fatigue syndrome. In 1998, advocates caught the CDC diverting nearly $13 million of that funding and spending it in other areas. There was a federal probe, and CDC eventually replaced the money.

It proved to be a turning point in how the agency interacts with – and is influenced by – advocates and the lawmakers who support them, Hearne said.

“I think it was really the first wake-up call to the agency that it needed to understand and respond to the needs of the public,” she said.

Disease debate

Clearly, most researchers believe chronic fatigue is real and that there is strong justification for the CDC to be working on it. But some are skeptical, and feel the agency has leaned too far, at times putting lesser ailments ahead of the public good because advocates and politicians demand it.

“I personally believe the CDC’s emphasis on this has been wrong from day one. They have responded to pressure,” said Dr. Peter Manu, a New York-based researcher who does not believe chronic fatigue is a real disease.

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.

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.

Money trail

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.

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 1994 gave advocates a place on a U.S. advisory committee on chronic fatigue syndrome. It was a turning point, because the 4-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.

An investigation found that nearly $13 million of $22.7 million meant for chronic fatigue work was spent on other programs. Lawmakers grilled the CDC director at the time, Dr. Jeffrey Koplan.

Porter, the Illinois congressman, was upset but there wasn’t much he could do, since Congress usually doesn’t mandate how the CDC should divvy its money among programs. Congress puts spending recommendations in appropriations reports, but they’re not binding, said Porter, who now works for a Washington law firm.

That’s an important point: There are authorization bills that often get a lot of press, such as the recent autism bill, but they don’t come with actual money. Advocates say it’s a bit like parents giving their teen permission to go to the movies, but not the allowance money to buy the ticket.

“Almost never do we substitute political judgment for scientific judgment in the actual appropriations” for the CDC, Porter said.

Some current and former CDC officials said that shifting funds to other disease-fighting efforts was not a crime. “This wasn’t a case of someone taking money for a holiday on the French Riviera,” Koplan said, in a recent interview.

But the agency clearly bungled how it communicated with Congress, said Koplan, now an administrator at Emory University. “We had not done procedurally what the CDC should do, which is inform Congress and ask their permission when funds for one health problem are used for another health problem,” he said.