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Pain meets politics in focus on chronic fatigue

/ Source: The Associated Press

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.

The CDC’s ‘wake-up call’

In the 1990s, Congress authorized money for the 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.

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.

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.

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.

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Shifting of funds

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.

Paying reparations?

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 slick new ad campaign unveiled in Washington last fall; and the NIH 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. Dental health programs get twice as much, and birth defects and disabilities efforts get more than seven times as much, according to agency budget figures. Domestic HIV/AIDS research and programs typically get more than 130 times the chronic fatigue allocation.

The public awareness campaign money is considered reparations for the diversion of funds in the mid-1990s, said McCleary, who was master of ceremonies at the CDC press conference on the new ad campaign.

“It’s sort of considered their good faith for any of that ever happening,” she said.

CDC officials say science is driving the public awareness campaign, not guilt. Scientists at the press conference noted the CDC’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 science is there and we need to respect and make that science more visible,” CDC chief Julie Gerberding said at the event.

Uncertain causes

At the same time, officials recognized that they still don’t know for certain what causes the illness. There still is no medical test for it, nor a cure. It may be a collection of illnesses, with different mechanisms.

Reeves co-authored a 2004 article that found a decline in chronic fatigue in the first few months after the Sept. 11, 2001, terrorist attacks. A study published last year found that childhood abuse and neglect increased the likelihood of chronic fatigue in some patients.

Such findings may suggest a complex interaction between stress, genetics and other factors in why some people develop chronic fatigue. Or, according to Manu, it may suggest something else entirely — an absence of real physical illness.

“I don’t think there is much to it,” said Manu, a professor at Yeshiva University’s Albert Einstein College of Medicine. He believes many of the skeptical researchers have moved on to other topics and have stopped talking about chronic fatigue.

Manu is one of only a few scientists still making such arguments. Others say scientific consensus has shifted away from Manu, and most doctors no longer doubt chronic fatigue is a real medical condition.

Moving past skepticism

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

Advocates are also working with Hillenbrand, who is considered the highest-profile celebrity to speak often and openly about the condition. Celebrities make a big impression on many members of Congress, McCleary noted.

She recalled watching a hearing several years ago when the actor Anthony Edwards appeared before Congress to talk about autism. At the time, he was starring in the television hit “ER” as Dr. Mark Greene. “They treated him like he was a doctor,” she said.

Hillenbrand said it’s gratifying that most doctors and government officials are finally taking the condition seriously, and she appreciates how warmly she’s been treated by leaders such as President Bush.

“The first thing the president said to me when I first met him was, ‘Don’t get up!”’ said Hillenbrand, who has been to the White House four times, including for a screening of the “Seabiscuit” movie.

“It’s nice to know that there is understanding and compassion in high places.”