Thursday, June 26, 2008

Fatigue syndrome affects millions

National photo exhibit to highlight patients’ experience

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Restful, sustained sleep is not possible for Willow Turansky of Frederick.

While her husband slumbers beside her, Turansky naps for no more than an hour at a time and glances at the clock. She wakes up in the afternoon only to feel more tired than when she went to bed.

Turansky, 43, said she suffers from chronic fatigue and immune dysfunction syndrome (CFIDS), a debilitating illness characterized by extreme fatigue lasting at least six months and resulting in decreased stamina and activity level.

CFIDS – also known as chronic fatigue syndrome – is accompanied by symptoms of muscle and joint pain, unrefreshing sleep and problems with memory and concentration. Sleep and rest often does not improve fatigue, and physical activity can worsen it.

There are no diagnostic tests for chronic fatigue syndrome, no cure and no known cause. Those who have it appear healthy and treatment is based on managing symptoms, which vary in severity from patient to patient.

The U.S. Centers for Disease Control and Prevention first identified chronic fatigue syndrome in 1988, and in 2006, launched a national public awareness campaign.

To further raise public awareness, the CDC and the CFIDS Association of America are sponsoring ‘‘The Faces of Chronic Fatigue Syndrome,” a national photo exhibit featuring the stories and portraits of patients, family members and health care providers at the Maryland Science Center in Baltimore. The exhibit runs through Sunday.

Dr. Peter Rowe, a professor of pediatric medicine at Johns Hopkins University, runs the chronic fatigue clinic at Johns Hopkins Children’s Center in Baltimore. He noted that chronic fatigue syndrome is not a new illness. Since the 1800s, different labels such as ‘‘nervous exhaustion” and ‘‘combat fatigue” were used to describe it.

‘‘It’s only been in the last 20 years that we’ve called it chronic fatigue syndrome, but it’s been around for a long time,” Rowe said.

The illness affects people of all socio-economic and ethnic backgrounds, mostly in their 30s and 40s. In the last 15 years, the amount of scientific data supporting chronic fatigue syndrome as a real, complex illness has changed public perception.

Therapies have not been adequately studied and research is underfunded, though, Rowe said.