Some skeptics view chronic fatigue syndrome (CFS) as a disease of depressed housewives or employees looking for an excuse to get out of work. But several current and former members of a California CFS support group suggest a different pattern: ambitious professionals who strove valiantly to keep working despite feeling debilitated by a mysterious ailment.
After Julie Woodside, a former account executive, caught what felt like the flu, she continued dragging into work for several years, often working only part of the week and then spending the next three days in bed. “I spent a lot of time managing my fatigue instead of my work and covering up for my errors,” she says, recalling that cognitive difficulties led her to make numerical mistakes in handling her clients' money.
“Chris” tried to keep his job as an information technology specialist for two years after getting a persistent flu, even though the number of days he made it to the office each week dwindled. “It was very rewarding work,” he says. “I didn't want to give that up.”
Steven D. Patterson, 43, managed to finish law school while suffering from symptoms including severe cramps, constipation, night sweats, flulike fatigue, food allergies and ringing in his ears. He wanted to keep his demanding job handling federal disaster assistance but was laid off, he believes, because his employer thought he was malingering.
Perhaps a sign of their desperation to find a cure and get their lives back on track is the willingness of many CFS patients to try treatments ranging from the occult to the alternative.
Woodside spent her savings to travel to London for “polarity therapy” — which claims to heal people by manipulating their “energy” forces — after she heard of a woman there who could work miracles. The woman waved her hands around, claiming to marshal healing forces, but Woodside didn't feel a thing.
“It was emotionally devastating when it didn't cure me,” she recalls. She has also tried acupuncture, herbs, homeopathy, vitamins, anti-depressants, sleeping pills, diet changes, mineral treatments, anti-viral medications and antibiotics. Nothing worked.
All CFS suffers say the syndrome has taken a devastating toll on their lives. Woodside stopped working in 1991 and has resigned herself to being “productive” only about two hours a day. Both “Chris” and Patterson say their girlfriends broke up with them because of the illness. Patterson moved to Florida last year to be close to a doctor he thinks can help him with his gastrointestinal and cognitive problems. Meanwhile, his memory and reading comprehension are so unreliable he has given up practicing law unless he has an associate to fall back on.
For some patients, the most painful aspect is encountering doctors who don't take the disease seriously and treat their problems as psychologically induced rather than biological. “We hear heartbreaking stories of people struggling to find someone who will listen to them,” says Woodside, president of the California Capital CFIDS Association, a patients' group in Sacramento.
Now that's changing. “More often, now, people will get the diagnosis, but the doctors don't know what to do for them,” Woodside says.
Johnson, Hillary , Osler's Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, Crown Publishers, 1996.
A journalist suffering from chronic fatigue syndrome (CFS) charges that federal investigators have not taken the illness seriously.
Natelson, Benjamin H. , Facing and Fighting Fatigue: A Practical Approach, Yale University Press, 1998.
A New Jersey Medical School neuroscience professor and leading CFS researcher describes the major medical hypotheses about the causes of the syndrome.
Showalter, Elaine , Hystories: Hysterical Epidemics and Modern Media, Columbia University Press, 1997.
A Princeton University English professor argues that CFS and Gulf War illness are modern versions of mass hysteria.
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Three British psychologists are skeptical that American researchers will find a single biological cause of CFS, arguing it more likely has psychological, social and biological causes.
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, Feb. 7, 2002, at http://www.guardian.co.uk/Archive/Article/0,4273,4351248,00.html.
A London physician who doubts that CFS is a biomedical disease criticizes a recent British government report (cited below), arguing that diagnostic labels like CFS simply make patients more hopeless. Critical responses from patients give a flavor of the controversy over whether CFS is biological or psychological. Responses are at: http://www.guardian.co.uk/Archive/Article/0,4273,4352791,00.html
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A neuroscientist summarizes the latest CFS research.
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, Jan. 19, 2002, at http://bmj.com/cgi/content/full/324/7330/124. One of the first CFS researchers at the National Institutes of Health criticizes a British government report (cited below) for sanctioning a treatment endorsed by patients but not by research, which involves carefully limiting one's activity.
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Commenting on a recent review of CFS treatments (see Whiting below), a British psychologist correctly predicted a hostile response from patients who argue that CFS is more biological than psychological. He urged “rapprochement” between physicians and patient groups over the issue.
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After surveying 350 studies on CFS treatments, British and American researchers concluded that cognitive behavioral therapy (CBT) and graduated exercise were most effective.
Chief Medical Officer, Department of Health , UK, Report of the CFS/ME Working Group, Jan. 11, 2002, athttp://www.doh.gov.uk/cmo/cfsmereport/index.htm.
A British government panel recommended behavioral therapy for CFS, combined with carefully limited lifestyle — a compromise criticized by chronic fatigue patients and medical experts — for opposite reasons.