Brought To You By The Houston Chronicle
Feb. 15, 2001, 7:57PM
Eyes are opened by advances in chronic fatigue syndrome
By PATRICK O'NEILL
You're tired. Dead tired.
Sleep comes grudgingly, if at all. And when it arrives, it doesn't restore your energy.
If you force yourself into activity, you pay a hefty price. You might be bedriddden for the whole next day if you try to do a couple of loads of laundry.
You can't concentrate. You feel as if your brain's trapped in a fog bank.
You have unexplained muscle aches and headaches.
This is the purgatory of chronic fatigue syndrome, and it seems to be destroying your life:
Your spouse doesn't understand this new you and is running out of patience quickly.
Your friends are drifting away because you don't have the energy to go out to dinner. And the explanation that you're too tired has worn thin.
You're taking loads of sick time, and your boss plainly thinks you're a flake.
You've been to the doctor, but he thinks you have depression. You see another doctor, who orders test after test, but she can't find any specific disease that would account for the way you feel.
Nobody understands. Nobody believes. Nobody offers help.
Well, almost nobody.
There is a growing awareness of chronic fatigue syndrome -- a mysterious and debilitating disease -- and certainly one of the most frustrating for physicians and patients alike. But there is no cure, no treatments that work consistently to alleviate symptoms, no easy lab tests to tell if you have it.
Nonetheless, researchers are chipping away at the mystery at a slow but steady pace. About 400 of them met last month in Seattle at the American Association for Chronic Fatigue Syndrome's fifth international conference. No breakthroughs were announced, but there were tantalizing hints of progress.
Even small steps forward are good news to Floyd Skloot, an award-winning Oregon writer and former marathoner who hasn't taken a running step in 13 years.
An estimated 800,000 Americans have the disorder. Skloot is one of the fortunate 10 percent who have been diagnosed. When Skloot, 53, became ill in 1988, it took him five months to get a positive diagnosis.
His life changed. Utterly.
He left a busy social whirl in Portland for the tranquillity of rural Amity, where he simplified his life.
"The secret is learning how to manage the illness," he said.
Skloot saves his energy like a miser hoards gold.
"I've come to understand a great deal about my limits in terms of daily activities," he says. "I still can't get through the day without several extensive breaks for sleep and rest. I honor that and incorporate that into my day."
Saving energy means cutting down on human interaction.
"Now that I've moved out to the country I see very few people," he said. "I don't have a social life. That's not a complaint. That's something that's had to be in order for me to function even minimally."
Eventually, Skloot wrote a book of essays The Night-Side: Chronic Fatigue Syndrome and the Illness Experience.
The author isn't counting on any quick fixes for the disease. And he hasn't seen much improvement in his own condition.
"My clustering of symptoms, the whole business of neurological difficulties, is still every bit as severe as it ever was," he says.
If it's frustrating for Skloot, it is as much so for doctors and researchers. The condition nearly defies definition. Victims can have as many as 70 symptoms without an obvious illness.
Some doctors still claim that CFS is a "bogus condition," a harbor for malingerers. But that kind of skepticism is giving way to solid biological evidence that people with CFS are different from those without it.
Roderick K. Mahurin, a University of Washington researcher, has found that the brains of CFS sufferers like Skloot struggle harder to process information than those of normal people.
"The brain's not working as efficiently," said Mahurin, who presented his findings at the Seattle conference.
Using sophisticated brain imaging techniques, Mahurin has found that problem-solving areas of the brain operate at a higher metabolic level in CFS patients. This tells him that the brains of the ill people are frantically bringing in more resources to deal with problems that well people can solve with ease.
That doesn't necessarily mean that CFS is a brain disease, he says -- only that when most people with the disease are put under stress, the brain works harder than normal.
So why do the brains of CFS sufferers work differently?
Finding the answer will take the cooperative efforts of neurologists, endocrinologists and immunologists, Mahurin said: "The answer is going to be so multidisciplinary that no one of us is going to have the answer."
Researchers are finding evidence of an inflammatory process at work in the disease.
One researcher pointed to "significant reductions" in fatigue, muscle pain, headache and painful lymph nodes after eight weeks of treatment with etanercept, a drug approved in 1998 to treat rheumatoid arthritis.
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