Janet Bohanon, who became ill with CFS in 1975, estimates she spent $30,000 to $40,000 in search of relief during the first ten years she was sick.

Her “treatments”—none of which worked— included herbal remedies, vitamin B12 shots, bee pollen, hair analysis, oral doses of hydrogen peroxide, a fasting diet of water and aloe vera juice, a three-year drug regimen based on the theory that a supersensitivity to yeast was to blame, acupuncture, a potassium supplement that tasted like “motor oil,” and a $200 appliance that propels negatively charged ions into the air. She’s also tried replacing her aluminum and Teflon cooking pans with glassware. She’s had her water supply checked for lead. She’s converted to hypoallergenic products. She’s still sick.

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Comedienne Gilda Radner was mistakenly diagnosed with chronic fatigue syndrome, which delayed the discovery of the ovarian cancer that eventually killed her. That’s one of the worst-case scenarios that can occur with CFS. So if you suspect you may have CFS, you want to be sure your physician has ruled out any other condition that can cause similar symptoms.

Because there’s no diagnostic test for CFS, the Centers for Disease Control established guidelines in 1988 for its diagnosis. According to the guidelines, you must have suffered from debilitating fatigue that has reduced your activities by 50 percent for at least six months. And you should have at least eight of the following symptoms:

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Here are the coping strategies recommended by the experts—physicians, psychotherapists, and patients. Some deal with the physical side of the condition, some with the emotional side of living with chronic illness, and some are simply practical tips. Together with your doctor’s advice and care, they can help you live day to day with CFS.

Establish a partnership with your health-care team. “Interview your doctor and see if it’s a good match,” recommends Meredith Titus, Ph.D., senior psychologist at The Menninger Clinic in Topeka, Kansas. “Ask when he’ll take phone calls, when he returns them. Trust your intuition.” Learn about your illness, too, and don’t be afraid to ask questions.

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