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CDC Diverts Chronic Fatigue Funds

July 6, 1999 GMT

ATLANTA (AP) _ Congress, responding to thousands of citizen appeals, set aside $22.7 million to study chronic fatigue syndrome. Federal researchers assured lawmakers they would investigate the mysterious disease, then used millions to study other illnesses.

At least $8.8 million, 39 percent of the funds earmarked for CFS, was spent on other research, including measles and polio. Government auditors say they cannot determine what happened to an additional $4.1 million.

Activists say some officials at the Centers for Disease Control and Prevention don’t believe CFS is a real disease, never intended to study it and merely paid lip service to the malady in testimony to lawmakers pressing for action.

``It’s been amazing with the CDC how much some of the scientists are concerned more about politics than science. They want to protect their careers. That’s why they put forth the token effort,″ asserts Kim Kenney, executive director of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America.

Patients diagnosed with CFS say they become so tired they can’t perform even the simplest tasks. One sufferer, Michelle Akers, a star on the U.S. women’s soccer team for more than a decade and now playing in the World Cup, is sometimes unable to work out with the team and often plays only half a game.

The symptoms of CFS _ muscle and joint pain, headaches and memory loss _ are difficult to measure, and attempts to pinpoint its cause have failed. Much like Gulf War Syndrome, CFS is not completely understood by the health community, and it’s usually diagnosed by ruling out other problems.

Researchers are sometimes reluctant to accept diseases characterized by such elusive symptoms, acknowledges Dr. Peter Rowe, director of the Chronic Fatigue Clinic at the Johns Hopkins Children’s Center in Baltimore. ``Lupus is an example. It wasn’t until better blood testing that recognition improved.″

The CDC’s alleged misappropriation of funds came to light last year when a researcher in the department assigned to CFS blew the whistle. An audit released May 10 by the inspector general for the Department of Health and Human Services confirmed his allegations.

``CDC officials provided inaccurate and potentially misleading information to Congress concerning the scope and cost of CFS research activities,″ the audit says.

Although the CDC was not legally prohibited from using CFS funds elsewhere, agencies tend to follow Congress’ recommendations to avoid offending the lawmakers who control their budgets.

That may be where part of the problem lies, some say.

``Most politicians aren’t very smart researchers, and most researchers aren’t very smart politicians, so you’ve got a real dilemma,″ says Dr. John Renner, president of the National Council for Reliable Health Information. ``Spending money wisely is what’s got to be done.″

In his complaint to Congress, Dr. William Reeves, a branch chief in the CDC’s National Center for Infectious Diseases, accused Dr. Claire Broome, then-acting CDC director, of providing false information to Congress when she testified that part of the 1996 CFS research money was spent on a new laboratory in Reeves’ department. No such laboratory was built.

Reeves also said the division director, Dr. Brian Mahy, transferred funds from the CFS program to research areas he deemed more important.

Mahy has refused to comment.

Rep. John Porter, R-Ill., chairman of the subcommittee that handles the CDC budget, says the problem is not that chronic fatigue money was used for other research, but that CDC officials lied about it.

``I have no problem if they had come back to us and said look, they don’t think there is any good research we can follow here, this is not good use of the money,″ Porter says.

Renner, however, notes that researchers are under pressure to appease lawmakers. If a CDC official told Congress that CFS was not worthy of research, he says, ``they probably would have shot the guy the next day at sunrise out in front of the Capitol building.″

Porter acknowledges the political pressure on researchers but says it is sometimes justified.

``CDC is a publicly funded institution of the government and it has to respond to some degree to the concerns of the people of this country, and those people are represented in Congress,″ he says.

In response to the audit, CDC director Jeffrey Koplan says the agency will share a CFS spending plan with Congress and nonprofit groups and add training for budget managers and staff.

The CDC denies the funding diversions arose from a lack of interest in chronic fatigue syndrome, says spokeswoman Barbara Reynolds.

``It was a lot more a question of the accounting of the ways the funds were spent as opposed to diverting the funds,″ she says.

But Reeves, the whistle blower, scoffs at the idea the problem lay with poor accounting. For more than a year, he says, he internally reported the diversion of funds and was ``basically told to shut up.″

Renner, whose Reliable Health Information council tracks medical fraud and misinformation, calls chronic fatigue syndrome ``an illness that has brought out the worst medical politics.″

CFS is ``something we don’t understand yet,″ he says. ``We have to be very, very cautious about how research money is going to be spent.″