Fatigued and Frustrated

Area sufferers unite to make public aware of illness

By Karen Brooks
Star Telegram Staff Writer
Photo by Star Telegram/Helen Jau
Published April 1, 1998

If Carol Sieverling is lucky, she gets out of her house maybe three times a week.

The Euless resident hasn't gone to the supermarket or the mall in two years.

It's a life often filled with isolation, pain and frustration.

It's a life for those with chronic fatigue syndrome, also known as chronic fatigue and immune dysfunction syndrome.

"If you haven't had it, you can hardly understand it," said Sieverling, 40. She has had the illness for more than ten years and leads a support group at Harris Methodist H.E.B. hospital in Bedford.

Sieverling wants to help her support group members break free of the isolation while teaching doctors and the public to recognize the syndrome. The group is spearheading a public awareness campaign next month.

An estimated 1 to 4 of every 100,000 people in the United States suffer from the syndrome, according to the Centers for Disease Control and Prevention in Atlanta.

There is no way to test for the condition. But symptoms include severe muscle fatigue, hair loss, balance problems, joint pain, memory lapses, tender lymph nodes, irregular heartbeat and body temperature, nausea, problems with brain functions and flu-like symptoms, the CDC reports.

Before a diagnosis can be reached, patients must suffer those symptoms for at least six months. The patients also must have unexplained, clinically evaluated and chronic fatigue that cuts their activity levels in half, authorities said.

"The best way I've read that describes the fatigue is that it's like I'm wearing a suit of armor, and there's a magnet on the floor," Sieverling said.

The CDC has commissioned studies on the syndrome, which bears a likeness to gulf war syndrome in its symptoms and elusiveness. The results are pending. Doctors now rule out conditions such as sleep disorders, lupus and multiple sclerosis before diagnosing chronic fatigue syndrome, according to the National Institute of Allergy and Infectious Disease in Maryland.

Sieverling, a former high school math teacher who later was pastor of a church in North Carolina, said the disease first came on a decade ago like a severe flu that lasted more than a year. She recovered but relapsed about two years later. The pattern has continued for years.

She now has problems balancing her checkbook and often loses her train of thought in midsentance. Sieverling said because she has difficulty taking care of herself when she's sick, she lives with her widowed mother.

In December, Sieverling began leading the 10-year-old Fort Worth and Mid-Cities CFIDS Support Group, which has more than 200 members on its mailing list. But only 15 to 20 people show up for the meetings, Sieverling said.

Part of the reason for this is a lack of energy, she said. For many sufferers, getting out of bed and showering saps their energy for the day. If sufferers push their limits physically, they often pay for it later with worse symptoms.

"This isn't a group that can get up and get out," she said. "On the other hand, there is a small core group that comes every week. They are the ones who are disabled, who are not working, who are pretty much homebound, and their primary need is to combat that isolation. And they come just to spend an evening with folks who understand, who know what it's like.

"Even if it means they spend the next two days in bed."

The group meets at 7 p.m. on the second Tuesday of each month.

In May, to celebrate International Chronic Fatigue and Immune Dysfunction Syndrome, Gulf War Syndrome and Fibromyalgia Awareness Month, the meeting will be May 1 and feature a nationally known researcher, Dr. Myra Preston of Charlotte, N.C. Preston, who could not be reached to comment, is conducting "brain mapping" research to determine whether chronic fatigue syndrome sufferers experience abnormal brain waves during thinking.

During May, the group will also have displays at area hospitals, libraries and North East Mall in Hurst. For information, call Sieverling at 817 283-1115.

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