Stalking A Shadowy Assailant

By Linda Williams

The symptoms are bad enough: sluggishness, sore muscles, fever, headaches and depression. But on top of all that, people who suffer from chronic fatigue syndrome often have to endure accusations of hypochondria. Now, years after the mysterious CFS gained notoriety as the "yuppie disease," the U.S. Government is finally starting to take it seriously. The Centers for Disease Control in Atlanta, which has been receiving about 1,000 calls a month from people who claim to be CFS victims, or from their relatives or doctors, has launched a $1 million "surveillance program" in which 350 physicians will study CFS patients in Reno, Atlanta, Grand Rapids and Wichita. "We're sort of starting from ground zero with this illness," says Walter Gunn of the CDC's viral diseases division.

To many experts, the CDC program comes none too soon. Last month, when 50 researchers gathered at the world's first CFS symposium in Cambridge, England, Dr. Byron Hyde of Ottawa called the illness "a major health and economic threat, second only to that of AIDS," and berated governments for "turning their backs to this health disaster."

No one knows how prevalent the illness is. Many doctors believe a plethora of past and present ailments, given such names as Royal Free disease, neurasthenia, myalgic encephalomyelitis and chronic mononucleosis, are all forms of CFS. The first documented CFS-like epidemic occurred in Los Angeles more than 50 years ago, and a serious one struck 1,136 people in Iceland in 1948. A huge outbreak in 1984 affected as many as 100,000 people in the U.S., Canada and New Zealand, and fresh reports have popped up steadily since then. While CFS seems to strike young professionals with energetic life-styles particularly hard, CDC's Gunn says it was a mistake to label it a yuppie disease, since it affects "people of all ages, from all walks of life."

Researchers have yet to pinpoint the cause of CFS. The Epstein-Barr virus is active in some, but not all, sufferers, and experts doubt it is the root of the trouble. The illness seems to involve some malfunction of the immune system, perhaps triggered by stress, that can allow any number of normally dormant viruses, including Epstein-Barr, herpes VI and even polio-like pathogens, to become active.

The illness is hard to diagnose, but fevers, swollen lymph nodes, muscle weakness, headaches and bouts of fatigue that last for six months or more can all be signs of CFS. Many patients are unable to work and even become bedridden. Alan Tolkoff, a Los Angeles management consultant who has recovered from CFS, got so weak that his wife had to spoon-feed him. With no specific tests to pinpoint the syndrome, patients having milder symptoms can go through several physicians before finding one who believes something is seriously wrong. However, more and more doctors are listening to the complaints and learning to distinguish CFS patients from people with tendencies toward hypochondria and depression.

With the CDC on the case, a better understanding of the illness may not be too far away. In the meantime, CFS sufferers are getting impatient. "The surveillance program is better than nothing," says 37-year-old Barry Sleight, a CFS patient and lobbyist in Bethesda, Md., "but it needs to be expanded. My God, this is an epidemic."

CHART: NOT AVAILABLE

CREDIT: TIME Chart by Joe Lertola

CAPTION: CHRONIC FATIGUE SYNDROME

With reporting by Cheryl Crooks/Los Angeles