THE VIRGINIAN-PILOT
Copyright (c) 1995, Landmark Communications, Inc.
DATE: Sunday, November 5, 1995 TAG: 9511060191
SECTION: LOCAL PAGE: B3 EDITION: FINAL
SOURCE: BY MARIE JOYCE, STAFF WRITER
DATELINE: NORFOLK LENGTH: Medium: 83 lines
It's still a mystery disease with an unknown cause and uncertain treatment. It was initially dismissed as a psychological problem, then pinned with the derisive label, ``yuppie flu.''
But for the 200 or so people who gathered Saturday for a program sponsored by a local support group, chronic fatigue syndrome - and the related disorder, fibromyalgia - are painful facts of life.
Chronic fatigue syndrome, also called chronic fatigue immune dysfunction syndrome, brings debilitating fatigue, along with other symptoms.
Fibromyalgia causes widespread pain - sufferers ache all over. They may have sleep disorders, digestive problems and chronic headaches.
Only in the past 10 years or so have doctors decided the two conditions, which seem to be immune system problems, are related.
Saturday at Sentara Norfolk General Hospital, sufferers snatched up pamphlets, took detailed lecture notes and pressed around a visiting expert with questions about medications, diet and exercise. The event was sponsored by the The Chronic Fatigue/Fibromyalgia Syndrome Group of Norfolk, the Virginia chapter of the Arthritis Foundation and the hospital.
Participants learned - if they didn't already know - that CFS and fibromyalgia offer more questions than answers. Causes are unknown. There is no definitive lab test. Treatment offers control, not cure.
Even the numbers are slippery. The Center for Disease Control estimates CFS afflicts 4 to 9 adults per 100,000. Advocacy groups say the number is higher; some insurance companies say it's lower. It seems to strike women more than men, and African Americans and Native Americans more than white people.
For a time, most doctors believed CFS was triggered by a virus. The Epstein-Barr virus, the bug that causes mononucleosis, was the named as the probable culprit, although doctors have looked at many others. Many doctors still accept the infection theory.
Others, including speaker Dr. Daniel Clauw, believe that the disorders are genetic. Victims inherit the problem, but it remains dormant unless triggered by an infection or by changes in the body caused by prolonged stress. Clauw is a rheumatologist at Georgetown University Medical Center in Washington.
Clauw worries when he says stress is the trigger, because it sounds like he thinks the problem is psychological.
``We're talking here about the biology of stress, and we're talking about profound physiological changes,'' he said.
Recently, another potential culprit was added to the pool, when doctors at Johns Hopkins found an apparent link to low blood pressure.
Treatment is a problem, especially for the sufferers of chronic pain. Traditional painkillers and narcotics don't work well.
Clauw said he has had good luck with low, daily doses of the tricyclic antidepressant amitriptyline, although some patients don't like the drug because it can make them dopey for the first few hours of the day. He suggested gradually building up the dose, and taking the drug several hours before bed instead of at bedtime.
The most effective treatment he said, is regular aerobic exercise. It's not easy for patients, since the symptoms of pain and fatigue work against exercise.
Clauw said patients should start out with just three or four minutes a day, three days a week, gradually building to 20-minute sessions. MEMO: The Chronic Fatigue/Fibromyalgia Syndrome Group of Norfolk meets the
last Wednesday of each month from 11 a.m. to 1 p.m. at Sentara Norfolk
General Hospital's Raleigh Building, Brickhouse Conference Room 108. For
more information, call 547-0936 or 474-2848. ILLUSTRATION: Graphic
WARNING SIGNS
The symptoms of chronic fatigue syndrome:
Profound fatigue, lasting more than six months, that interferes
significantly with daily life, and four or more of the following
symptoms:
Impaired memory or concentration.
Sore throat.
Tender lymph nodes.
Muscle pain.
Pain in various joints.
New headaches.
Unrefreshing sleep.
Post-exertion malaise. by CNB