Two weeks ago, independent researchers announced that the disease known as "chronic fatigue syndrome" is linked to the same family of retroviruses that has been associated with AIDS. Ironically, it was good news for those who suffer from the mysterious illness. At least now the scientific world may believe they are really sick.
Their disease has been derisively labeled "yuppie flu" because it often strikes young, middle-class people with symptoms that might as easily be caused by trendy workaholism. The victims are tired, depressed and anxious in addition to suffering from flu-like symptoms. In severe cases, the patients cannot even get out of bed. The illness is not fatal.
For years, the government refused to do adequate research on chronic fatigue syndrome, even when Congress ordered that research. Up until two years ago, scientists from the National Institutes of Health (NIH) and the Centers for Disease Control (CDC) were apt to say the disease was a figment of the patient's imagination.
Only constant grass-roots pressure from people with chronic fatigue syndrome has produced any action from the government. In 1988, Congress, under heavy lobbying from the victims, appropriated $1 million to the NIH for research into the disease and ordered NIH to investigate any links with AIDS or cancer.
So far, the government has little to show for its work except an ambiguous "surveillance" system of four cities to get a better count of the number of victims.
An outbreak of chronic fatigue syndrome in Incline Village, Nev., in 1984 is typical of how the government has handled the disease. Two CDC researchers were sent to the town. They took blood samples from victims and reached no conclusions.
Paul Cheney, a leading independent investigator into chronic fatigue syndrome, had asked the CDC to investigate the Incline Village outbreak. He told our reporter Paul Zimmerman that "it was like pulling teeth to get them out in the first place." When the CDC researchers showed up, "they didn't spend a lot of time with the patients," Cheney said.
Cheney is one of the researchers who released the study earlier this week linking chronic fatigue syndrome to the family of viruses responsible for AIDS.
Since 1985, the CDC has not conducted any lab testing of blood samples of chronic fatigue sufferers. The government research lab hasn't even supported a consistent label for the disease, which has gone through four name changes in five years.
It took the CDC until 1988 to come up with a working definition of chronic fatigue syndrome, and there is still no test for the disease. Doctors can only diagnose patients by ruling out other ailments.
There are some recent signs of movement at the CDC. Walter Gunn, head of the CDC investigative team looking into chronic fatigue, told us the CDC no longer considers the disease a mental illness. Instead, the depression that victims suffer, he said, is a result of the illness, not the cause of it. Gunn is beginning case studies of chronic fatigue patients, which he hopes to finish within a year.