In 1987, when David Patterson was a junior at the University of North Carolina, his life as an active, athletic young man suddenly came to a screeching halt. Patterson was diagnosed with what is now known as chronic fatigue syndrome (CFS), an ailment causing tiredness, muscle pain, and mental confusion that can put people's lives on hold for months, if not years. Patterson had to limit his activities severely for the next three years. "My social life was nonexistent," he recalls. "I would just go to class, come home, and crash."
Today, the 30-year-old Patterson has fully recovered from the debilitating effects of CFS and is a full-time accountant in Charlotte, N.C. He and his doctors still don't really know what it was that helped him get better, because a definite cure has yet to be found. The exact causes of the illness are the object of much speculation, and some doctors question whether CFS is an illness in its own right or a loosely defined collection of ailments. Despite such controversy, the malady is now getting more serious scientific and medical attention. The 500,000 Americans who are diagnosed with CFS can expect better treatment and more effective support than ever before.
"YUPPIE FLU." When Patterson first got sick, CFS was unnamed and unknown. In the mid-1980s, it was thought to be the Epstein-Barr virus, a condition that has features similar to CFS. It was also derided as "yuppie flu," since it seemed to afflict mostly young professionals. CFS received a formal clinical label only in 1988. Today, doctors can identify CFS symptoms more easily by ruling out similar-looking illnesses such as lupus and Lyme disease. People diagnosed with CFS often describe its onset as a bad case of the flu. But whereas the symptoms of flu go away after a few weeks, they persist or recur in a person suffering from CFS. Unexplained fatigue lasting more than six months, a persistent mind-fog like that of a serious hangover, headaches, and muscles that feel like putty are the hallmarks. And they often afflict people who otherwise appear perfectly healthy and whose medical history or genetic makeup gives no clue of a predisposition to the illness.
If those symptoms sound familiar, don't panic. About 95% of people who think they have chronic fatigue really suffer from a temporary state of overwork or depression, says Anthony Komaroff, professor of medicine at Harvard Medical School and head of CFS research at Boston's Brigham & Women's Hospital. If you suspect that you have CFS, get a good physical evaluation to make sure nothing else is going on. A wide range of conditions, from multiple sclerosis to iron deficiency, can mimic CFS symptoms.
If you are diagnosed with CFS, scientific research is on your side. Recent studies at Johns Hopkins Hospital in Baltimore link CFS to a potentially treatable blood-pressure disorder. By giving patients salt tablets to counteract sudden drops in blood pressure or putting them on a steroid therapy commonly used to regulate pressure, doctors are finding that episodes of exhaustion, muddled thinking, and dizziness can be relieved significantly.
Unfortunately, the new salt and steroid treatments seem to be more effective on young patients who haven't had CFS for very long than on people who have been ill for years. In the absence of a universal cure, the most common strategy is to tackle symptoms individually. To relieve sleeping disorders that affect many CFS patients, low doses of older antidepressants, such as Elavil and Norpramin, are frequently used. (New-generation medications such as Prozac seem to be ineffective.) Nonprescription analgesics such as ibuprofen and acetaminophen can calm muscle pain and fever.
The downside to the medications is they can produce unpleasant side effects. Steroids have a capacity to cause a blood-pressure surge, weight gain, fluid retention, and potassium depletion, which in turn can increase your fatigue. Antidepressants can make you feel wired and jittery.
Some patients and physicians prefer to employ alternative therapies such as acupuncture and homeopathy. In addition, magnesium and other natural products have been used to reduce muscle pain and fatigue--with mixed results, to be sure. Grapefruit-seed extract, olives, garlic, and lactoferrin--a protein found in mothers' milk--have helped some patients overcome the bloating and headaches that are linked to a high level of toxins in the gut.
"SHARK CARTILAGE." None of of the above remedies, however, qualifies as a quick fix. While alternative medicines may help some people improve their overall health, there are no scientific studies proving their effectiveness. "Sufferers shouldn't waste money on shark cartilage, evening primrose oil, and megadoses of vitamins and minerals," says Marvin Lipman, a clinical professor of medicine at New York Medical College in Valhalla, N.Y.
Whichever therapy you opt for, make sure you confer with a competent doctor. "It's very dangerous when patients start to self-medicate," says Orvalene Prewitt, president of the National Chronic Fatigue Syndrome Assn. in Kansas City, Mo. Prewitt cautions that patients run the risk of overdosing or taking medication that can cause undesirable cross reactions. For example, an excess of vitamins can be intoxicating and may even lead to increased fatigue.
Stay away from too many drugs. What helped Patterson in the end was not the plethora of exotic therapies he tried--including gamma globulin shots to boost the immune system--but slowing down and getting lots of rest. "I had to start listening to my body," he says.
With limited energy, a change in lifestyle is inevitable. But doctors advise patients with CFS and other chronic illnesses to continue leading as normal a life as possible. "Try not to drop out," says Komaroff. "Find a pace of life that works for you, but don't rest too hard, either."
Indeed, many doctors encourage mild exercise to keep up physical conditioning--for example, low-level weightlifting or riding a stationary bike without resistance. Don't overdo it, though. "What most hurts people is when they try to exercise their way back to health," says Dr. Paul Cheney, whose Charlotte (N.C.) practice is entirely dedicated to the study and management of CFS. Cheney warns that heavy aerobic exercise makes CFS patients sicker.
CFS can be costly. Some people go through scores of expensive lab tests before they get diagnosed--and persuading health insurance companies to reimburse you for expenses can be tough. Most carriers do not recognize CFS as a real illness because there is no definitive medical test that can prove you have the disorder. One way to obtain compensation is to have your doctor list individual symptoms, such as muscle aches or sleeping disorders, without mentioning CFS.
NO PROOF. It's hard to apply for long-term disability with this malady. An increasing number of disability insurers are limiting benefits for victims of CFS and other "self-reported" illnesses, where medical tests fail to pinpoint a cause. Leading the way is UNUM Life Insurance Co., the nation's largest group disability carrier, which has received approval in 39 states to restrict coverage for CFS and other long-term unspecified ailments to two years. "If all someone is doing is telling their doctor they are tired and can't work, and there is no medical evidence to prove it, they are not eligible for long-term disability," says John Roberts, senior vice-president for disability at UNUM. From 1989 to 1995, claims from chronic fatigue sufferers quadrupled, he says.
In the absence of a definite cure, CFS patients remain in medical limbo. But statistics show that many eventually overcome the more troublesome symptoms, and about 30% recover completely, according to the Centers for Disease Control & Prevention in Atlanta. And as doctors and public institutions take the disease more seriously, CFS sufferers can now ask for help without being labeled hypochondriacs or sick yuppies.