Estimated read time: 2-3 minutes
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As many as 800,000 Americans suffer the extreme fatigue, sore throats, swollen lymph glands, memory loss and pain associated with the disease known as chronic fatigue syndrome (sometimes also called chronic fatigue and immune dysfunction syndrome, or CFIDS).
Nobody knows what causes the syndrome or why symptoms come and go. There is no cure, and few treatments work consistently. Information is hard to come by, but here are some useful Web sites:
National Centers for Disease Control and Prevention: http://www.cdc.gov/ncidod/diseases/cfs/
National Institutes of Health's "Health Matters" site: http://www.niaid.nih.gov/factsheets/cfs.htm
The CFIDS Association of America: http://cfids.org
American Association for Chronic Fatigue Syndrome: http://www.aacfs.org/
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TIPS FOR CAREGIVERS
Those who have cared for people with the disease also offer help and encouragement. Borden Flanagan, who cares for author Laura Hillenbrand, has thought long and deeply about his role. He shares his hard-won wisdom:
"It took me a very long time to accept that being with her meant being with her illness, forever. I did my best to avoid facing this fact, to the detriment of us both, I think. ... You need to face the facts before you can carve out a way to live with them."
"Don't be Florence Nightingale for your wife or husband; take care of them out of love, not piety, for the latter puts you at great distance."
"To love someone is to share their sufferings to some extent. One of the greatest rewards has been to see Laura overcome her illness - through sheer determination to be fully alive. ... The other great reward, of course, is the closeness we share from having navigated such difficult waters together."
"The rough spots require the courage to face the crisis head-on; don't pretend that today's signs of a relapse will be gone tomorrow, or that new symptoms can't mean that a novel complication has developed. Doing justice to one's spouse's illness requires facing harsh reality."
"One also needs a certain amount of self-knowledge; you need to know, and have the guts to admit, when you're being impatient or overly fretful, bossy or timid. There are four cardinal virtues - rather traditional ones - that are important to cultivate: wisdom, courage, moderation and justice. Working on these will make your life better, and will make you a better caregiver."
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(c) 2005, The Dallas Morning News. Distributed by Knight Ridder/Tribune News Service.
