WASHINGTON — The National Institutes of Health should increase its support for research into chronic fatigue syndrome in children to match the burden and impact of the illness, Peter Rowe, M.D., said at a meeting of the Health and Human Services Department's Chronic Fatigue Advisory Committee.
More philanthropic support is needed as well to advance the care of patients with chronic fatigue syndrome (CFS), said Dr. Rowe, a professor at Johns Hopkins Children's Center, Baltimore, and director of the center's chronic fatigue clinic.
Currently, just a few hospital or university-affiliated clinical centers are treating children with CFS. There are no training grants to attract new researchers, no university research centers, and only $1 million annually in NIH funds targeted at children with CFS.
“This isn't enough to create a critical level of interest in bringing good people into the field, and it does not make CFS seem like a viable option to the new pediatric researcher,” Dr. Rowe said.
As a result, it's difficult for CFS patients to find physicians to care for them, Dr. Rowe said. CFS specialists are usually overburdened, and when families can't find timely treatment, they sometimes resort to seeing physicians who charge high rates for an evaluation.
Dr. Rowe said he knows of one place where a patient can be evaluated fairly quickly—but at a price tag of $5,800. “I think we have a responsibility to protect children and young families from this kind of economic risk,” he said.
To be diagnosed with CFS, patients generally must have severe chronic fatigue for 6 months or longer with other known medical conditions excluded by clinical diagnosis, and they must concurrently have four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multijoint pain without swelling or redness; headaches of a new type, pattern, or severity; unrefreshing sleep; and postexertional malaise lasting more than 24 hours, according to the Centers for Disease Control and Prevention. The symptoms must have persisted or recurred during 6 or more consecutive months of illness and must not have predated the fatigue.
The heterogeneous nature of the illness itself makes it difficult to recognize and treat the disease, and it's difficult to control for just one variable in a randomized clinical trial on CFS because of the many overlapping and interacting pathophysiologic dysfunctions associated with the condition, he said.
Dr. Rowe proposes conducting randomized trials by withdrawing ostensibly effective therapies. For example, in an otherwise well-managed and clinically stable patient with CFS, the patient would be randomized to receive either a placebo or the active medication. Another option would be to incorporate a “run-in period” for studies during which other influences to symptoms are brought under good clinical control before examining the efficacy of a single agent.