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Chronic Fatigue Syndrome Still Puzzles

Widespread malady has yielded many questions, few answers

FRIDAY, March 26, 2004 (HealthDayNews) -- People get run down, tired, even exhausted at times. For most of them, a good night's sleep or a short vacation is enough to recharge their batteries.

But what if you could never shake that weariness? And no matter how much you slept or tried to exercise, the soul-dragging exhaustion never left?

That's what it's like for the estimated half million Americans or more with chronic fatigue syndrome (CFS). No amount of sleep helps them feel more awake, while activity -- both mental and physical -- may make them more tired. Many also endure muscle pains and weakness, memory problems and other symptoms with no detectable source.

The scope and causes of chronic fatigue, and even its existence -- it has been derided as the "yuppie flu"-- are hotly debated.

To shed more light on the condition, March has been declared National Chronic Fatigue Syndrome Awareness Month.

A 1994 panel of experts defined chronic fatigue syndrome as the following: at least six months of severe, lingering exhaustion without any other medical explanation; and the presence of four or more additional symptoms, including memory or concentration problems, sore throat, tender lymph nodes, muscle or joint pain (without swelling or redness), headaches, "unrefreshing" sleep and post-exercise malaise that persists more than a day.

Complicating matters, the symptoms must have recurred across six or more consecutive months, and they must not have predated the onset of chronic fatigue.

Scientists once suspected a link between CFS and infection with the Epstein-Barr virus (EBV), which causes mononucleosis. They have since backed away from that connection, and now no single infection is thought to bring on the disorder.

"Fatigue as a state is something that's very common, and it's something that everyone has experienced," says Leonard Jason, an epidemiologist and psychologist at DePaul University in Chicago. At any given time, for example, one in four Americans reports being fatigued.

Only about 4 percent to 5 percent of people say they're exhausted for six months straight. Many of them have non-medical reasons for their fatigue -- job stress or a new baby, for example. Those who meet the definition of chronic fatigue syndrome make up perhaps 0.4 percent of the population, Jason says. Women with the condition outnumber male patients three-to-one.

Still that works out to "an incredible public health challenge" by numbers alone, Jason says. Despite the sheer volume of patients -- most of whom go undiagnosed, he adds -- the condition is the Rodney Dangerfield of diseases: It gets no respect.

"There's a lack of appreciation for the seriousness of the condition," Jason says, "because everyone has experienced tiredness and fatigue. They say, 'I'm tired and I go to work. Why don't these people?' "

In his own research, Jason has found that the popular stereotypes about chronic fatigue syndrome don't hold true. Contrary to being a "yuppie" ailment, most of the people reporting symptoms consistent with the condition in the Chicago area are poor and members of ethnic minorities. "It wasn't middle-class white women," he says.

If the public is confused about CFS, they're in good company. Dr. Timothy Craig, a CFS expert at the Pennsylvania State University College of Medicine, says scientists have made relatively little progress against CFS. "I think a lot of physicians still don't understand what it is, how to diagnose it," he says.

A smattering of medications work in some patients, though no one drug helps everyone, Craig says. These include antidepressants, nasal steroids to treat sinus infections and new-generation sleeping tablets. But so far, there's no such thing as an "energy pill" that can help all CFS sufferers, he says.

Kim McCleary, who heads the CFIDS Association of America, says treating chronic fatigue is "purely symptomatic at this point. A provider who understands the basics of this syndrome should start by trying to tackle the most severe symptom" first. That's usually -- but not always -- fatigue.

"Sleep can compound pain and cognitive problems. It just generally makes everything worse," McCleary says.

While it's not clear what does help people with chronic fatigue, here are a few things that almost certainly do not work, according to the U.S. Centers for Disease Control and Prevention.

  • Dehydroepiandrosterone (DHEA). Although preliminary studies suggested some benefit in CFS patients with this drug, subsequent research failed to confirm those results. Health officials say people should consider DHEA "experimental" and that only those with abnormally low levels of the substance should consider taking the drug.
  • High colonic enemas. This procedure has shown no evidence of effectiveness in treating CFS. What's more, the CDC warns that high colonic enemas can trigger intestinal disease.
  • Kutapressin. This substance, made from pig's liver, has shown no value in treating CFS. However, it can cause allergic reactions.

Ultimately, McCleary says, treating CFS requires a great deal of patience on the part of both doctors and patients. "It can be very frustrating," she adds.

More information

For more on chronic fatigue syndrome, go to the CFIDS Association of America or the National Library of Medicine.

SOURCES: Leonard Jason, Ph.D., professor, psychiatry, DePaul University, Chicago; Timothy Craig, D.O., professor, medicine and pediatrics, Pennsylvania State University College of Medicine, Hershey, Pa.; Kim McCleary, president and chief executive officer, CFIDS Association of America
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