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Tiredness you don't get over
Saturday 13 August 2011
The actors in a play about chronic fatigue syndrome performed July 15 at Missouri State University are all healthy. The playwright, Rivka Solomon, who lives in the Boston area, is not.
Solomon, who has had chronic fatigue syndrome for more than two decades, said she was exhausted by the effort to help coordinate the outdoor performance near the university's Taylor Health and Wellness Center.
"I was bedridden for weeks after the play was performed, and I wasn't even there," Solomon said. "It's crazy. I'm still sick."
Such is the life for people with chronic fatigue syndrome, a disease that affects more than 4 million Americans, according to the CFIDS Association of America, a Charlotte-N.C. organization. Its symptoms include incapacitating fatigue that is not relieved by rest, problems with concentration and short-term memory and flu-like symptoms such as sore throat, enlarged lymph nodes and unexplained muscle pain. There is no cure.
The syndrome, also called myalgic encephalomyelitis, was identified in the 1980s. Its cause is unclear although some research has suggested it may be linked to a virus called XMRV that is also found in some prostate cancer patients. Other research has not reached this conclusion.
"It's being tired like you've never been tired before," said Coralu Exter, 68, of Aurora who had to quit her part-time secretarial job. "It's a tiredness that you don't get over."
The disease affects women at four times the rate of men. Sufferers say they are often told by doctors that it's all in their heads.
"They don't understand," Exter said.
Diagnosis is often difficult because there are no definitive physical signs or lab tests that identify the syndrome. Doctors diagnose the syndrome by excluding other diseases that a person could be suffering from.
The CFIDS Association of America said fewer than a fifth of Americans suffering from chronic fatigue syndrome have actually been diagnosed.
Solomon demonstrated at the U.S. Department of Health and Human Services in Washington, D.C., to try to draw attention to the disease, but the effort exhausted her.
"I was bedridden for six weeks after that," Solomon said.
She decided to write "I Represent: Invisible No More" to try to draw attention to the disease since its sufferers often don't have the stamina themselves to lobby for funds for research into its causes. The 40-minute play focuses on the true stories of people. They include a woman so sick she can't speak above a whisper, a teenager who hasn't been able to attend high school because of the illness and Solomon herself.
"Her vision for the piece was to have people who are sick and housebound represented by young, vibrant, healthy people," Nelson said.
The actors were MSU juniors Adam Williams, Emali Kimker, Felicia Basanavicious and Rolo Rodriguez.
"The play is eye-opening on so many different levels," Rodriguez said.
Solomon hopes the play is performed elsewhere and that more people learn about chronic fatigue syndrome.
"I lost my friends, I lost my job," Solomon said. "You're not dead, but you're the walking dead. You're the bedridden dead."
The above, with comments, originally appeared here.
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