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No magic cure for chronic fatigue syndrome

Feel like you simply never get enough sleep? Even after long periods of rest, do you wake up feeling sluggish, unrested, worn down? You may be suffering from a condition known as chronic fatigue syndrome.
“Chronic fatigue syndrome is something that’s only recently begun to be recognized as an actual disease in the medical community,” said Sarah Estes, J.C. Blair sleep technician.
“It’s quite nebulous in that the condition is really a group of symptoms, and each case requires symptom-based treatment. The one constant, however, is that people who suffer from the condition oftentimes find themselves in a constant grind that not only attacks the body physically, but also impacts coping mechanisms in the brain.
“There’s no one ‘magic bullet’ cure for the condition – the symptoms of each patient must be evaluated in order to arrive at a suited treatment.”
Chronic fatigue is a non-contagious, non-fatal condition whose existence some medical skeptics continue to question. It is characterized by at least six months of severe fatigue not helped by bed rest. Patients also report muscle pain and impaired memory, among other symptoms. The CDC estimates more than 1 million Americans have the condition, with the rate four times higher among women.
Over the last decade, some pressure has been put on the powers that be to advance research for and heighten public awareness of the condition. In the 1990s, congressmen authorized money for CDC research into the cause of chronic fatigue. In 1998, advocates caught the CDC diverting nearly $13 million of that money and spending it in other research areas. There was a federal probe, and the agency eventually replaced the money.
It proved to be a turning point in how the CDC interacts with – and is influenced by – advocates and the lawmakers who support them.
“I think it was really the first wake-up call to the agency that it needed to understand and respond to the needs of the public,” said Shelley Hearne, a veteran health advocate and visiting scholar at Johns Hopkins University’s Bloomberg School of Public Health.
Estes said those who suffer from CFS generally are impacted both “physically and economically.”
“These patients tend to have very broken sleep,” she said. “They experience a lot of alpha intrusion, which refers to brain wave activity. Alpha intrusion will not usually wake a person up from sleep, but it takes away from the benefits of sleep, in particular, it interrupts the restorative phases that make sleep feel ‘refreshing’.
“This interruption can impact the immune system, as many who suffer from CFS report a low threshold for pain and a propensity for illness.”
Most researchers believe chronic fatigue is real and that there is strong justification for the CDC to be working on it.
By and large, Estes said the results of CFS treatment are positive.
“Good, solid sleep will positively impact the effectiveness of the immune system,” she said. “Again, there’s no one cure for CFS; sometimes anti-depressants work to alleviate the symptoms, in other instances, psychological treatment is required.
“One thing that helps is maintaining a regular sleep schedule. In other words, establishing a regular bed time and wake up time that’s the same every day will help to level things off.”
Estes also recommended decreasing or eliminating caffeine and nicotine intake, especially near bedtime. She also said that room temperature and noise levels during rest contribute to a person’s ability to sleep soundly.
“One thing people need to understand where good sleep is concerned is that the bedroom should be considered a sanctuary,” she explained. “Many people take the ‘real world’ into this sanctuary – paying bills, watching TV, working on the computer, ironing clothes, etc. To get the most out of sleep time, people need to keep the ‘real world’ out of the bedroom.
“Ideally, the only activities that should be taking place here are sleep and sex.”
In the 2006 budget year, the CDC spent about $6 million on chronic fatigue research. That doesn’t include the $4.5 million for an ad campaign unveiled in Washington last fall; and the National Institutes of Health spent another $5.5 million on the disorder. CDC funding for the condition has been steady in recent years.
“With proper treatment, almost all patients suffering from CFS can attain at least some level of relief,” Estes said.
(The Associated Press contributed information to this report.)
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On the Net:
J.C. Blair Sleep Lab: http://www.jcblair.org/sleepstudy.htm
CDC: www.cdc.org