Published in Washington, D.C. 5am -- July 7, 1999
By Laura R. Vanderkam
THE WASHINGTON TIMES
Federal researchers have blown $8.8 million -- and misplaced another $4 million -- set aside by Congress to study chronic fatigue syndrome. Critics say the Centers for Disease Control and Prevention never took the disease seriously. In fact, they say the CDC merely paid lip service to the malady in testimony before Congress. An inspector general's report found that more than half the $22.7 million appropriated by Congress in 1996 to study the disease was misspent. And a congressional subcommittee responsible for appropriating the funds wonders if Congress was misled on the money's use.
"CDC officials provided inaccurate and potentially misleading information to Congress concerning the scope and cost of chronic fatigue syndrome research activities," the audit report said in May. In a complaint, 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 research money was spent on a new laboratory in Dr. Reeves' department.
No such laboratory was built. Dr. Reeves also said the division director, Dr. Brian Mahy, transferred funds from the CFS program to research areas he deemed more important. Congress does not allocate funds based on the disease, according to sources on the House Appropriations Committee's subcommittee on labor, health and human services and education, but agencies are generally expected to follow congressional guidelines.
In previous testimony, though, the subcommittee was told that the CFS research was continuing as planned. Rep. John Edward Porter, Illinois Republican and chairman of the subcommittee, was "quite upset" about the allocation of funds. "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 a good use of the money," Mr. Porter said. Mr. Porter, who has been on the subcommittee since the 1980s and was one of the first members of Congress to call for CFS research, expressed concern about the purported misappropriation of funds.
He questioned if the CDC misrepresented its research plans to Congress. "The 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 said. The CDC denies that funds were intentionally misspent. "It was a lot more a question of the accounting of the ways the funds were spent as opposed to diverting the funds," CDC spokeswoman Barbara Reynolds said. But Dr. Reeves, the whistleblower, scoffed at the idea the problem lay with poor accounting.
For more than a year, he said, he internally reported the diversion of funds and was "basically told to shut up." Activists say the money was intentionally diverted to other purposes. Chronic fatigue syndrome --which used to be called Epstein-Barr Syndrome, is characterized by muscle and joint pain, headaches, memory loss and general malaise. It is difficult to diagnose and researchers are often reluctant to base a study on a group of elusive symptoms.
Some have suggested that the disease does not really exist, and it has been dismissed as the "yuppie flu" or simply became the diagnosis of choice when doctors aren't sure what the patient really had. Kim Kenney, executive director of the Chronic Fatigue and Immune Dysfunction Syndrome Association of America, said such attitudes toward the disease led to the misappropriation.
"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," she said. After the audit, CDC Director Jeffrey Koplan said the agency would share the CFS spending plan with Congress and nonprofit groups and add training for budget management and staff, but sources in the subcommittee said Mr. Porter was still troubled by the allegations in the audit report, and that "those responsible should be called into account."
The disease affects millions of Americans, according to advocate groups. One famous sufferer is Michelle Akers, a member of the U.S. women's soccer team, now playing in the World Cup. She has battled the disease for eight years, and often must sit out half a game or miss practice.
"I always have to worry if I'm going to run out of gas," she said of
the disease. Still, Miss Akers has managed to help lead the American team.
"I need to play with wild abandon every once in a while or it wouldn't
be me," she says. This article is based in part on wire reports.