Pain meets politics in focus on chronic fatigue

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.

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