U.S. health officials stress disease is real, though treatments remain elusive.
By Amanda Gardner
HealthDay Reporter
U.S. health officials on Friday launched a major campaign to increase awareness of chronic fatigue syndrome, an illness that has labored under an intense level of controversy."This disease has been shrouded in a lot of mystery. Sometimes people question if it's real or not real," Dr. Julie Gerberding, director of the U.S. Centers for Disease Control and Prevention, said at a news conference. "We hope to help patients know they have an illness that requires medical attention and help physicians be able to diagnose the illness, and be able to validate and understand the incredible suffering that many people and their families experience in this context."
The campaign will consist of public service announcements, brochures, a "tool kit" for health-care professionals and a photo exhibit called "The Faces of Chronic Fatigue Syndrome," which will travel to cities across the country throughout 2007. "We hope this will be a turning point in the public's awareness of the disease as well as in health-care professionals' ability to diagnose and treat it," Kim McCleary, president and CEO of the CFIDS Association of America, said at the news conference. "This launch is so important to increasing understanding of this illness," added Dr. Nancy Klimas, of the University of Miami Miller School of Medicine. "Historically, lack of credibility of this illness has been a major stumbling block."
According to Dr. William Reeves, of the CDC's National Center for Infectious Diseases, the level of impairment experienced by people with chronic fatigue syndrome is comparable to that of multiple sclerosis, AIDS, end-stage renal failure and chronic obstructive pulmonary disease. One CFS patient, Adrianne Ryan, said that sometimes taking a walk or a shower was too much, and resulted in her collapsing for weeks afterwards. Ryan is a former marathoner.
Doctors still don't know what causes CFS or how to treat it successfully, but more than 4,000 studies over the past two decades show definite underlying biological abnormalities, said Dr. Anthony Komaroff, of Harvard Medical School. "This is not an illness that people can imagine they have. It's not a psychological illness," he said. "That debate, which has raged for 20 years, should now be over."
Among other things, Komaroff pointed out, the brain hormone systems of people with CFS are different than those without the disease. Brain functioning is also impaired and cells' energy metabolism seems to be compromised. Analyses of the activity levels of 20,000 genes in people with CFS have found abnormalities in genes related to the part of brain activity mediating the stress response, Reeves said.
Some 1 million Americans suffer from the disease. Women are affected at about four times the rate as men and non-white women are affected more than white women. The disease can affect any age and demographic but is most likely to strike when a person is 40 to 59 years of age. According to a large study conducted in Wichita, Kans., only half of people with CFS have consulted a physician and only 16 percent have been diagnosed and treated, although studies have shown that those who get appropriate care early in the illness have better long-term results. A quarter of people with the disease were unemployed or receiving disability, with the average affected family foregoing $20,000 annually in income. That amounts to $9.1 billion in lost income and wages for the U.S. economy as a whole, the study found.
While there's reason to be happy with advances in the basic scientific knowledge of the disease, Klimas said she was less happy with advances in care. Over the past 20 years, she said, she has treated more than 2,000 people with CFS who were "angry and defiant, frustrated, trying to convince physicians, friends and families that this was a real illness."
"We need much more work to understand the biological underpinnings and translate this into clinical practice," she said. "At the same time, there are effective strategies we can use right now, treatments that do help and help significantly."
