It has been splashed across the covers of national magazines and featured on popular television shows such as "The Golden Girls." Celebrities such as Cher are reputed to have it, as are more than 100,000 lesser known Americans.
But despite its high profile, chronic fatigue syndrome (CFS) -- an illness primarily characterized by profound lethargy -- remains a mystery to the medical community. No cause or cure has been identified, and until recently, laboratory tests uncovered few abnormalities in patients, leading some physicians to claim that the illness is psychological.
However, a growing body of research is starting to dissolve some of that skepticism, as well as helping to close in on possible causes and treatments. Most recently, a study published last month in the Annals of Internal Medicine showed that nearly four out of five CFS patients examined had a brain inflammation detectable by magnetic resonance imaging (MRI) scans. Of healthy people examined, only one in five had evidence of such inflammation.
The study, which was conducted by researchers from eight medical centers including the Brigham and Women's Hospital in Boston, also showed that 70 percent of those with CFS were infected with human herpes virus-6. But it did not identify the virus as the cause of the syndrome.
"I think this will help the cause of CFS sufferers" by showing that they do have physical abnormalities, said Esther Rodman, a Pikesville woman who developed the disorder in 1987 and now operates a national chronic fatigue syndrome hot line. "Maybe if doctors see this, they'll realize that they're being too quick to say, 'Send her to a psychiatrist, it's all in her mind.' "
Those who have CFS typically experience a debilitating fatigue that lasts at least six months. Many also suffer from flu-like symptoms such as sore throats, headaches, swollen lymph glands, and pain in the joints and muscles. Depression and cognitive problems such as memory loss or inability to concentrate are also experienced by some sufferers, as is insomnia.
The disorder, which is not progressive or fatal, afflicts people of all ages and both sexes, although women in their 30s are the majority of patients. Because some of the first-publicized cases involved young high achievers, CFS has been labeled "yuppie flu" -- a term most patients find trivializing and inaccurate.
Other research is also shedding new light on the disorder. A study in the December issue of the Journal of Clinical Endocrinology and Metabolism reported hormone deficits in the
brains and endocrine glands of people with CFS. This finding indicates that drugs that stimulate the brain to restore hormone levels to normal may work to treat the ailment, according to Dr. Mark A. Demitrack, the head of the research team performing the study and an assistant professor of psychiatry at the University of Michigan Medical Center.
And in a related discovery, Baltimore neurologist and psychiatrist Dr. Alan Greenberg has found significantly low levels of neurotransmitters in many CFS patients. Neurotransmitters are chemicals in the brain that act as brakes and accelerators for various brain and body functions -- and also affect the levels of hormones. The depletion of such chemicals, which include serotonin, dopamine, and norepinephrine, could explain CFS patients' fatigue, as well as symptoms such as insomnia and inability to concentrate, said Dr. Greenberg, who theorized that a virus invading the body somehow causes the depletion. Much of the recent research has led doctors to believe that the disorder is caused by one or more viruses and is related to an abnormality of the immune system, he said.
Still, skepticism about the syndrome persists, which first came to prominent attention in 1984. According to Ms. Rodman, it's not unusual for CFS sufferers to be told that their symptoms are psychological. "I've have thousands of people tell me that their -- doctors say it's all in their head," she said.
Sometimes, that response may be justified, according to Dr. Janet Horn, a Mount Washington internist who treats many CFS patients. "Not as many people have [CFS] as think they do," said Dr. Horn, who noted that disorders with similar symptoms have been reported in medical literature for centuries. "With the pace we keep these days, everyone's tired. It's really tempting to say, 'Gee, I've got this syndrome.' But I caution people about that. I'd much rather find something else that can respond to treatment."
Indeed, many people who think they have CFS actually suffer from depression -- an illness which is far more treatable, though perhaps carries a greater stigma, she said. To insure that her patients don't have other ailments, she puts them through batteries of tests, and often sends them to neurologists and psychiatrists for evaluation.
Studies conducted by the U.S. Centers for Disease Control, however, show that only half of CFS patients exhibit any signs of depression. The majority of those developed that disorder only after they became afflicted with CFS, according to Dr. Walter Gunn, the CDC physician who led the research.
That's the case for Scotty Stevenson, 36. Until he came down with CFS four years ago, Mr. Stevenson, an artist who supported himself by working as a cook at a local restaurant, "never got depressed."
But now, with his activities curtailed severely because of his illness, the Hollins Market resident finds himself occasionally afflicted with the blues.
"I guess I get depressed when I can't do the things I used to be able to do," said Mr. Stevenson, who finds that walking a block can exhaust him, and who suffers intermittently from leg pains, swollen glands, and insomnia. Because of his illness, he is
unable to work. "I've never had the strength to be able to guarantee an employer that I'd show up."
Mr. Stevenson has treated his illness by resting as much as possible and by avoiding strenuous exercise. He's also found some relief by taking Kutapressin, an experimental drug which is administered by injection, and which seems to increase energy levels in some CFS patients.
Despite the discoveries made by research, no truly effective treatment for the disorder has yet been found, although there are many experimental drugs, including Kutapressin and Ampligen, which are thought to improve the symptoms, said Dr. Greenberg. Most doctors deal with the ailment by prescribing plenty of bedrest, as well as anti-depressants and anti-inflammatory drugs, said Dr. Horn.
Because a malfunction of the immune system is thought to play a large part in CFS, Dr. Greenberg often advises patients to bolster their immune systems by reducing the amount of fat in their diets, as well as by taking vitamins.
As researchers uncover more information about the disorder and about the immune system, the likelihood of finding more effective treatments grows, said Dr. Greenberg, who noted that some patients recover from the illness within months, while others remain sick for years.
There is certainly no lack of research. Despite an initial slowness by the American medical community to investigate the disorder, in addition to other studies, the U.S. Centers for Disease Control in Atlanta has been researching the syndrome since 1989, and support groups and chronic fatigue associations have sprung up all over the country to promote awareness about CFS.
Help can't come quickly enough for those who suffer from the syndrome. "Before this happened, I thought I was on top of the world, doing everything I wanted to do," said Mr. Stevenson. "Then you get this to hit you, and it can really bring you down."
No one is sure what causes chronic fatigue syndrome. But many researchers point to a combination of viral and immunological factors.
One popular theory suggests that an abnormality of the immune system permits a virus that has lain dormant inside the body to be revived. That impairment "allows the virus to persist in the body and to sap its vitality," said Dr. Alan Greenberg, a Baltimore neurologist and psychiatrist.
A prime suspect in the past was the Epstein-Barr virus; currently, attention is focusing on human herpes virus 6. But many researchers think more than one virus is involved.
A related theory proposes that the immune system overreacts to the virus, continuing to battle it even after the threat has disappeared, according to "Hope and Help For Chronic Fatigue Syndrome" (Simon & Schuster, $10) by Karyn Feiden. In so doing, the system persists in producing chemicals called cytokines which cause such flu-like symptoms as lethargy and muscle aches.
This theory would explain why many of those with CFS have respiratory allergies predating their illness. Allergies are linked to an overactive immune system.
Stress, a genetic predisposition, or environmental toxins could all play a part in the malfunctioning of the immune system, according to "Hope and Help For Chronic Fatigue Syndrome."
For more . . .
The following groups have more information about chronic fatigue syndrome:
* Chronic Fatigue Immune Dysfunction Syndrome Society, P.O. Box 230108, Portland, Ore. 97223, (800) 442-3437.
* Chronic Fatigue and Immune Dysfunction Syndrome Association, P.O. Box 220938, Charlotte, N.C. 28222, (800) 442-3437.
* National Chronic Fatigue Syndrome Association, 3521 Broadway, Suite 222, Kansas City, Mo. 64111, (816) 931-4777.
* The Chronic Fatigue Syndrome Hotline (410) 358-1203, contact: Esther Rodman.