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U.S. funding for study of chronic fatigue illustrates role politics plays in disease research

By MIKE STOBBE

Associated Press

February 20, 2007

ATLANTA — 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 is a non-contagious, non-fatal condition whose existence some medical skeptics continue to question. It is not the only example of outside influences moving a lower-priority health problem higher on the scale of importance.

In 2000, the March of Dimes lobbied Congress to create a center on birth defects within the CDC. In December, autism advocates were credited with passage of a bill that authorized nearly $1 billion over five years to research that condition.

But chronic fatigue paved the way, said Shelley Hearne, a veteran health advocate and visiting scholar at Johns Hopkins University's Bloomberg School of Public Health.

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

It proved to be a turning point in how the CDC 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.

Clearly, most researchers believe chronic fatigue is real and that there is strong justification for the CDC to be working on it. But some 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.

Some doctors dismissed it as "yuppie flu," but several members of Congress took it seriously. One was John Porter, an Illinois Republican on the House Appropriations subcommittee that oversees public health programs. He became involved in the 1980s when a constituent visited and told Porter about his daughter's mystery illness.

At about the same time, an 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 different challenge: Their syndrome doesn't shorten lives, there's no proof it's infectious, and many doctors refused to take it seriously.

The CFIDS Association, led by Kim McCleary, applied pressure by becoming a part of the government. Federal officials in 1995 gave advocates a place on a U.S. advisory committee on chronic fatigue syndrome. Previously only scientists and government officials were on the panel.

It was at one of the committee'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. In the meeting, the CDC's Dr. William Reeves emerged as a whistleblower who refused to back up his boss, Dr. Brian Mahy.

Mahy, who still works at CDC, declined to comment.

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.

Still, the agency 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.

In the 2006 budget year, the CDC spent about $6 million on chronic fatigue research. That doesn't include the $4.5 million for the ad campaign unveiled in Washington last fall; and the National Institutes of Health spent another $5.5 million on the disorder.

CDC funding for the condition has been steady in recent years, and chronic fatigue syndrome is only a minor budget line at the agency.

The public awareness campaign money is considered reparations for the diversion of funds in the mid-1990s, said McCleary.

CDC officials say science is driving the public awareness campaign, not guilt. They note the agency's chronic fatigue research group generated about 80 peer-reviewed papers since 2000 that provided new information about the cost and genetics of the condition.

The new ad campaign is playing a pivotal role in finally moving American society past skepticism, advocates said. By the end of January, the spot has aired 4,425 times in 122 markets on 180 TV stations.

Laura Hillenbrand, a journalist afflicted with chronic fatigue who wrote the best-selling book "Seabiscuit," said it's gratifying most doctors and government officials are taking the condition seriously.

And she appreciates how warmly she's been treated by leaders such as President George Bush.

"It's nice to know that there is understanding and compassion in high places," she said.

On the Net: CDC: www.cdc.org; CFIDS Association: www.cfids.org

Article link: http://www.mailtribune.com/archive/2007/0220/life/stories/chronic_fatigue.htm