Monday, Jun. 29, 1987
Stealthy Epidemic of Exhaustion
By Dick Thompson
Gerald Kennedy, a high school teacher in Truckee, Calif., first attributed his flagging energies to the extra stress at the end of the school year. Then he developed more severe symptoms, including blinding headaches and painful sensitivity to light. He found it increasingly difficult to stay awake. Says Kennedy: "It was all I could do to get up to go to the bathroom." He was not alone. In the nearby Lake Tahoe area, about 150 others reported similar complaints. Two years later Kennedy has yet to return to work. Says he: "If you push yourself, you pay for it."
Like Kennedy, thousands of Americans believe they are victims of a stealthy epidemic that is draining their physical strength and mental energy. Initially, physicians attributed the mysterious affliction, which often strikes clusters of people, to a mixture of depression, hypochondria and mass hysteria. It has been called the yuppie disease -- because a disproportionate ) number of its victims have been young, white professionals -- chronic mononucleosis or, simply, fatigue syndrome. Hollywood is rumored to be plagued by the disease. Film Director Blake Edwards struggled with it for three years. "Your body starts to collapse," he says. "It was a matter of hell every day."
Decades after it was first reported, fatigue syndrome still lacks a formal name, a cause or a cure. It saps both physical and intellectual reserves, producing symptoms that include swollen glands and fever. Its most devastating physical effect is extreme exhaustion. People use similar words to describe the weakness ("It's hard to lift my coffee cup," "It's like an anvil on my chest"). Many sufferers report suicidal depression and mental impairments, such as flawed memory and inability to read.
Medical researchers remain puzzled by the syndrome. Says Epidemiologist Jonathan Kaplan of the Centers for Disease Control (CDC) in Atlanta, who investigated the 1985 Lake Tahoe outbreak: "We don't know what causes it, and we have a hard time diagnosing it." Still, notes Stephen Straus, a virologist at the National Institutes of Health (NIH), who has interviewed sufferers, "you have to start believing what they're describing."
The symptoms and grouping of victims reminds some virologists of epidemic neuromyasthenia, a polio-like syndrome that occurred in clusters from California to Iceland between 1934 and 1960. Some victims suffered tiredness for years. No organic cause was ever discovered. The latest medical research has focused on several viruses active in fatigue-syndrome sufferers. One frequently cited suspect is Epstein-Barr virus, a member of the herpes family that is carried by an estimated 90% of American adults. Researchers speculate that stress, an immune-system deficiency or even environmental toxins could activate EBV, which is known to cause most cases of infectious mononucleosis and has been linked to Burkitt's lymphoma.
But they are unsure whether EBV causes fatigue syndrome or whether its presence merely reflects an immune system so weakened by another organism that it no longer keeps the virus in check. Two recent reports in the Journal of the American Medical Association failed to link EBV to fatigue syndrome. Harvard Researcher Anthony Komaroff, an author of one study, suspects that another virus, perhaps an "EBV mutant," will eventually prove to be the cause.
Of 500 Boston patients studied by Komaroff's team, 21% claimed to have suffered extreme exhaustion for at least six months. None had pre-existing organic illnesses that could account for their symptoms. The second J.A.M.A. paper, by Kaplan's CDC team, revealed that only 15 of 134 patients studied in the Lake Tahoe outbreak had "severe, persistent fatigue" of undetermined cause. The remainder either had symptoms that quickly disappeared, missed little or no work because of illness, or had other conditions that could have brought on fatigue.
"There certainly are people who are ill and who can be disabled by this," says the NIH's Straus. "But the percentage is relatively small compared to the claims." Unfortunately for the victims, doctors have few treatments to offer. Stress reduction or sleeping pills may provide some relief. For now, says Gidget Faubion, who runs a 9,000-member support group for the afflicted that is based in Portland, Ore., most sufferers must learn to accept the severity of their condition. Says she: "If you don't change your attitude, you're going to make a suicide call to me within six months."
With reporting by Scott Brown/Los Angeles and Steven Holmes/Washington