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Lifestyle

July 13, 2007

Fighting fatigue: Local woman, art show work to battle stigma of chronic fatigue syndrome

Jean Harrison knows that some of her former colleagues in the art world think she was a prima donna, or worse, that she was lazy.



Toward the end of her career restoring paintings, she was working at the Peabody Essex Museum in Salem, Mass., and had days when she couldn't get herself out of bed before 1 p.m. She often worked at the museum alone until 11 p.m. or later eating Cheez-It crackers and drinking Diet Coke. Her work sometimes wasn't finished until the very last minute. Some days, she slept 16 or 18 hours.



Thinking it might be depression, she saw a doctor. She took kung fu classes, hoping exercise would help. She even got tested for attention deficit disorder.



"I was eager to find anything that would treat this," Harrison said. "I knew there was something wrong."



Nothing worked. She got worse.



"I went to the museum one day and said I thought I would probably be out of work for a while," Harrison said. "I was crawling on the floor - crawling, literally - to get to the bathroom. ... I was probably asleep almost 20 hours a day, easily."



That was in 1994. Harrison, 54, now knows she has chronic fatigue syndrome, a disease that affects an estimated 1 million Americans, the majority of whom have never been diagnosed.



It is a disease that many people assume is all in the patient's head, even though numerous research articles have been published showing otherwise, said Kim McCleary, president and chief executive officer of a patient advocacy group called The Chronic Fatigue and Immune Dysfunction Syndrome Association of America.



That's why The CFIDS Association has put together a photo exhibit, funded by the federal Centers for Disease Control and Prevention, of people who have chronic fatigue syndrome. It opens at the Boston Public Library on Monday, July 16.



"We chose people who might, as a group, represent people you'd see in the mall or the library, people who would remind you of all the people in your life that could have this," McCleary said.



The purpose is to help the roughly 80 percent of patients who don't know they have the disease to learn about chronic fatigue syndrome and feel comfortable seeking help, she said.



"This is real and it has a devastating effect on people's lives," McCleary said. "But there's hope out there. There's courage and dignity, even though there is still some stigma."



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