CDC Diverts Chronic Fatigue Funds

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01:10 AM ET 07/06/99

CDC Diverts Chronic Fatigue Funds

By PATRICIA J. MAYS

Associated Press Writer

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, 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.

Rowe, director of the Chronic Fatigue Clinic at the s 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. 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. Reeves, a branch chief

in the CDC's National Center for Infectious Diseases, accused Dr.

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. Mahy,

transferred funds from the CFS program to research areas he deemed

more important.

Mahy has refused to comment.

Rep. 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 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.''