Dr. Philip Lee, the respected former U.S. Assistant Secretary of Health and Human Services, gave the equivalent of electric shock therapy to the movement to scrap the name “chronic fatigue syndrome” in favor of something less polarizing, less trivializing.
On Saturday afternoon, when he was presented with the Gov. Rudy Perpich Leadership Award, Lee made a compelling argument for changing the name of the illness even before scientific research resolves questions about just what the illness really is.
“I believe it is time for a change in the name CFS,” Lee told a surprised audience that was spending the day listening to inconclusive but provocative reports of studies that attempted to hone in on the basis of the illness. Lee said the current name is the result of a committee definition of the illness that “has proven to be useful in some areas, such as prevalence studies,” but because most doctors have no respect for the name, it doesn’t serve patients well.
“The overlap in symptomatology with Gulf War syndrome, fibromyalgia and multiple chemical sensitivity warrants a thorough re-examination by the federal government. This illness needs the same kind of focused attention as is being put into AIDS,” Lee said. “I don’t know that we’ll get $1.7 billion (as is spent on AIDS research), but we should get more than the $10 million that is being spent on this illness now. “We need to move it forward. We need to get on with it,” he said.
The CFIDS Association of America sought to move it forward by co-sponsoring with the AACFS a forum held Monday evening at the close of the conference. Of the 12 U.S. patients who made formal statements, nine urged an immediate change in the name. Janet Dauble suggested environmental illness and Albert Donnay proposed multi-sensory sensitivity syndrome. Nancy Solo said the new name should incorporate brain disease. Pat Fero said scientists should choose a name, while John Herd suggested a summit format to select a new name.
On the other hand, Bobby Mulligan urged leaders of the two associations to focus on educating physicians with the current name, and John Trussler urged a delay until more is known about the etiology of the illness to take advantage of the educational opportunity afforded by a name change.
During the conference, researchers and clinicians were asked to complete a survey for their input on the issue. Researchers tended to feel the name was not a hindrance to them, while clinicians felt the name did make it more difficult for them to obtain appropriate specialist care for their patients, to get third-party reimbursement for their own services, and to assist their patients with disability issues. (Details from this survey will be included in the next issue.)
On the morning following the name change forum, the Department of Health and Human Services’ CFS Coordinating Committee picked up the momentum and assigned CFIDS Association Executive Director Kim Kenney to survey representatives of the international community about renaming CFS.
The issue remains a difficult one, as Dr. Anthony Komaroff of Harvard Medical School told The Boston Globe: “There’s unanimity on one point: The current name is really bad because it trivializes the illness, but we don’t know enough to choose the right name. And we’d damn well better get it right and be prepared to live with it for the next decade.”