Pain meets politics in focus on chronic fatigue

updated 2:52 p.m. ET Feb. 18, 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 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.

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