Chronic Fatigue Syndrome Coordinating Committee

holds open meeting

WASHINGTON, September 22, 2000 (GulfLINK) - An independent panel recently held a public meeting in Washington, D.C., to review a recent report by the General Accounting Office and determine how to improve its service to veterans experiencing chronic fatigue; one of the symptoms some believe to be associated with Gulf War.

The Chronic Fatigue Syndrome Coordinating Committee, sponsored by the Department of Health and Human Services, is a 12-member panel tasked with assuring coordination and communication regarding chronic fatigue syndrome research between agencies of HHS, the medical community and volunteer organizations which support chronic fatigue patients. Open meetings are one way the committee works to include support organizations and people diagnosed with chronic fatigue syndrome in their efforts.

In her opening remarks, Ruth Kirschstein, acting director of the National Institutes of Health, described chronic fatigue as a debilitating disease that involves pain, impairment and bone crushing fatigue. She said some people feel the name "chronic fatigue syndrome" doesn't adequately explain this disorder, because the syndrome has many symptoms in addition to fatigue.

"I want to assure you that the National Institutes of Health takes this disorder, as it takes all disorders, very seriously," Kirschstein said. "It's a complex, multi-system illness. We deal with these all the time. Sometimes we know what causes them, sometimes we don't, but we work hard through research to try to do as much as we can.

"We know that people are very disabled by this syndrome. We want to find ways not only to look for causes but also to be able to treat this very difficult problem. We need to train health care providers to recognize the syndrome and to see it as the patients see it."

Kirschstein also focused on one of the difficulties doctors have faced - establishing a reliable way to know when they encounter a case of the disorder.

"We've been working with others to assess clinical and other data concerning a case definition of CFS," she said.

Currently, chronic fatigue syndrome may be diagnosed if a patient suffers severe chronic fatigue for six months or longer and has at least four other symptoms from this list: short term memory loss, sore throat, muscle pain, tender lymph nodes, joint pain, headaches, unrefreshing sleep and malaise after exertion that lasts more than 24 hours. Diagnosis is difficult because there are no laboratory tests to identify the syndrome, and many other illnesses have a similar group of symptoms.

The committee invited comments from the members of the public who attended, most of whom suffered from chronic fatigue syndrome or represented support groups. Their concerns were consistent. They expressed the need for more research into the cause of, and possible treatments for the illness, and the funding to get that research done. Committee members expressed agreement with the speakers, at least in part because the syndrome doesn't appear to be as rare as originally thought.

Jonathan Sterling, a committee member and President of the New Jersey Chronic Fatigue Syndrome Association, pointed out that studies done in 1997 estimated fewer than 20,000 Americans with the syndrome. Last year's prevalence studies estimated more than 800,000 cases.

"That's a 40-fold increase of the number of people suffering from this illness," Sterling said. "You would think that as you see those numbers rising, that the agencies would be doing everything to get more research generated."

Although, funding for chronic fatigue research has increased since 1987, in the last four years funding has remained more or less level. In 1999, the National Institutes of Health spent about $6.9 million on chronic fatigue research, while the Centers for Disease Control and Prevention budgeted about $6.5 million. Jeffrey Koplan, director of the CDC, explained their approach.

"CDC is not a research institution," said Koplan. "Its traditional constituency is state health departments. The CDC only does research that relates to public health, such as vaccine safety, or the cause of a West Nile virus outbreak. The CDC is very directive in research, while [the National Institutes of Health] funds research that is investigator generated."

The CDC has focused largely on measuring prevalence and searching for disease causes, primarily exploring infections and immunological avenues. It has also done a significant amount of work trying to ferret out a case definition for CFS, Koplan said.

At the NIH, however, the mission is research. Scientists there have focused on possible causal agents and looked at the syndrome's effect on various body systems.

"In the next few months we'll be beginning field work for a national survey of chronic fatigue syndrome," Kirschstein said. "And we're beginning work on the protocol for a patient registry which will include a tissue repository. Also, we're pleased to link up with our partners in the public health service to help provide professional education on diagnosis and management of CFS."

Research into possible causes of CFS has centered on possible infectious agents and patents' immunologic dysfunction. Other possibilities pursued involve hormone imbalances and poorly regulated metabolic functions like blood pressure. At this point, no theory seems to stand out.

So far, the coordinating committee has made few formal recommendations to the secretary of Health and Human Services. The committee's first recommendation was to ask HHS to examine opportunities to combine existing data from various sources, to better understand the prevalence and epidemiology of CFS. The committee has also asked the secretary to help develop some clinically useful instruments that could be linked to other CFS information and that more money be made available to attract more researchers into the field.

Sterling summed up the committee's primary message at the end of the meeting. "Increasing funds and intellectual resources has got to be a priority," he said.