Health
Campaign puts a spotlight on chronic fatigue syndrome
■ Treatment tips for physicians are provided in a new CDC initiative to improve care for the many people with this disorder.
By Susan J. Landers — Posted Nov. 27, 2006
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Washington -- The Centers for Disease Control and Prevention is intent upon raising the profile of chronic fatigue syndrome, a puzzling condition that often evades medicine's traditional diagnose-and-treat radar.
After years of research, a critical mass of scientific data is providing solid evidence that CFS is a valid medical concern, said CDC Director Julie Gerberding, MD, MPH. What's more, she said, it affects about a million people in the nation.
Dr. Gerberding unveiled Nov. 3 a national CFS public education and awareness campaign called "Get Informed. Get Diagnosed. Get Help."
Suspicion that CFS was not a real disease has dogged physicians and their patients for decades. After all, who doesn't get fatigued, the critics asked. Now the message is that this is a real illness that needs real medical care, Dr. Gerberding said.
Thousands of research studies provide abundant evidence that CFS is a physiological illness, not a form of depression or hypochondriasis, according to the agency.
Central to the new education campaign are materials designed to help physicians recognize and treat patients who have the debilitating syndrome. Early detection is key to a successful outcome, said William Reeves, MD, director of the CDC's Viral Exanthems and Herpesvirus Branch, who also spoke at the event.
CFS is characterized by profound, debilitating fatigue that lasts at least six months and results in substantial reduction in occupational, personal, social or educational activities, according to the CDC's new CFS Toolkit for Health Care Professionals. The fatigue is not improved by rest and may be worsened by physical or mental activity.
Additional symptoms include problems with memory and concentration; unrefreshing sleep; muscle and joint pain; headaches; tender cervical or axillary lymph nodes; recurrent sore throat; and an increase in fatigue and patient-specific symptoms that persist longer than 24 hours after mental or physical exertion.
In addition, there often is a pattern of symptom relapse and remission.
A large study conducted in Wichita, Kan., found that more women have the syndrome than men and it occurs most frequently among people ages 40 to 59, Dr. Reeves said. CFS affects all ethnic groups and races in countries around the world. Although people of all income levels can develop the syndrome, it is more common among lower-income households, CDC material states.
Evidence also shows that 40% to 60% of people with the illness recover either partially or totally, but it can take years.
"Although the bad news about CFS is we still don't know what causes it, we do have 4,000 studies that show underlying biological abnormalities in patients with this illness," said Anthony Komaroff, MD, professor of medicine at Harvard Medical School who has studied the disease for 20 years.
Researchers have employed new imaging technologies to look closely at the brains of people with CFS, he said. Many studies show differences in the brain's hormone system among people with the syndrome. Studies also reveal impairment of cognitive function and the autonomic nervous system that could explain some symptoms, he said.
Having treated 20,000 or more CFS patients in the past 20 years, Nancy Klimas, MD, director of the CFS Research Center at the University of Miami, Fla., understands the treatment challenges. She has had patients who are angry and defiant and others who hid their condition.
"The lack of credibility for the disease has been a stumbling block," Dr. Klimas said. "And although advances continue, there are still challenges to care."
Clinical trial data are needed on the safety and efficacy of treatments, and insurance companies need to recognize CFS as a medical condition and provide coverage, she added.
In addition, fewer than 20% of people who have CFS have been correctly diagnosed with it, the CDC says.
Although there is no "magic bullet," physicians can treat symptoms, such as sleep disorders and pain, according to agency materials. And they should advise patients to pace their activities and maintain good nutrition. Alternative therapies such as gentle massage and meditation also might prove helpful.
Strengthening and conditioning programs can reduce patients' pain as well as improve strength and flexibility and boost stamina, CDC material states.
The agency cautions against prescribing multiple medications. For example, tricyclic antidepressants can do double duty by helping with sleep and pain.
Many CFS patients are sensitive to medications that act on the central nervous system, making it necessary to start with low doses and build gradually as tolerance is determined.
Patients also are likely to turn to alternative therapies, and physicians should encourage them to discuss this to ensure that options are safe and effective.
The National Institutes of Health has stepped up efforts to improve the disease's science base by awarding several new grants to continue research in the field. "This is just the beginning, but we commit to doing more," said John Agwunobi, Health and Human Services assistant secretary for health.