By DORSEY GRIFFITH
December 13, 2006
Chronic fatigue syndrome has been called a lot of things in the past 20 years. Mostly, it has been a stepchild of an illness, maligned or misdiagnosed by doctors, pooh-poohed by employers and neglected by drug makers.
That is beginning to change. The federal government last month launched its first awareness campaign about chronic fatigue syndrome. The cause is bolstered with new research and millions in additional funds dedicated toward finding a cause and possible cure.
"This isn't hooey," said Dr. William Reeves, chief of the chronic viral diseases branch at the federal Centers for Disease Control and Prevention. "This illness ... was thought to be a bunch of upper-class, yuppie, white women who were whiners. But there is a substantial body of solid, scientific literature accumulating."
Although symptoms can vary among chronic fatigue syndrome sufferers, their illness is typically marked by aches, fatigue, memory loss and confusion, and insomnia or unsatisfying sleep.
Although researchers have not pinpointed a single cause for chronic fatigue syndrome, they know that at least 1 million Americans have the illness, and that it affects men, women and to some extent children - regardless of race, ethnicity or economic status.
"Someone who has CFS is as disabled as someone with muscular sclerosis, someone with AIDS or end-stage renal disease," said Reeves. "The others will die from their diseases, but those with CFS are no less disabled."
No blood test or X-ray can detect chronic fatigue, but documented changes in the brain structure, immune system, central nervous system and genetic makeup of patients provide potent clues for unraveling its mysteries.
Those afflicted are relieved to see that the medical establishment is beginning to believe that their suffering - long thought to be imagined - is real.
"We, as people who are at the bottom of the food chain, are at their mercy," said Mike Riley, who has chronic fatigue syndrome. "But it's probably the most seriously the federal government has ever taken the disease."
Health officials in the United States first took interest in the condition in 1985, after a cluster of people in Lake Tahoe's Incline Village came down with a mysterious illness that featured headaches, sore throats and prolonged fatigue.
Similar outbreaks were reported, including one in Raleigh, N.C., about the same time.
"The entire North Carolina symphony came down with a flu-like illness and several members never recovered from it," said Dr. Charles Lapp, who runs the Hunter Hopkins Center in Charlotte, a CFS clinic, and sits on the federal CFS advisory committee.
Although mononucleosis was suspected, research determined that the virus that causes mononucleosis, Epstein-Barr, was not the sole cause for the patients' long illnesses.
The CDC officially named the malady "chronic fatigue syndrome" in 1988. But the name would be little help to those affected, who continue to suffer in the absence of adequate medical care and lingering skepticism.
Frustrated by the general lack of empathy, people with chronic fatigue often resort to doing their own research on the Internet, and those desperate enough seek unproven therapies.
I've been fired by doctors," said Arlene Rubb, a 58-year-old California woman who believes her illness was triggered by an aerobics class and made worse after a car accident in 1982. "We are too hard to treat. We don't fit in a box."
A former hiker who ran a group home and worked as a bookkeeper, Rubb is now disabled. She takes nine medications, including morphine for pain and a stimulant for energy during the day. She requires oxygen while she sleeps, which she does in a reclining chair in her living room.
Rubb has lost a lot of mobility and has limited stores of energy. She can barely walk the 50 yards between her home and mailbox. She gets exhausted just talking on the telephone; her neck muscles are so weak that her head hangs down, her chin resting on her chest.
She said she could not manage without the help of her husband of nearly 30 years, Rick Rubb, and others who shuttle her to doctor appointments and pharmacies.
"It's humiliating," she said of the debilitation, which, over the years, dashed her dreams of a college education and weighed on her relationships with friends and family.
"I was always a very independent person, and I have reached the height of dependence."
Part of the CDC's awareness campaign includes an introduction of a CFS diagnostic tool kit and a push to get medical schools to teach the subject.
The federal government also can point to a growing body of scientific evidence to help sway physicians who still doubt the illness is real.
Dr. Anthony Komaroff, a professor of medicine at Harvard Medical School and longtime chronic fatigue syndrome researcher, cites, for example, some genetic abnormalities in people with the disease. He said he believes the illness requires a genetically vulnerable immune system, which is then triggered by certain injuries or infectious agents.
"The immune system becomes engaged in a constant, months and years-long low-grade war against this foreign infection," he said.
Reeves said the central nervous system - the brain and spinal cord - clearly plays a role in chronic fatigue syndrome. He said physical or emotional stress, commonly cited as a condition preceding the onset, activates a part of the nervous system involved in the immune system and body's use of energy.
"Do we have a rapidly increasing idea of the pathophysiology of CFS? Yes," he said. "Do we have something amenable to a curative treatment? I am hoping, but I don't have anything now."
Scripps Howard News Service, http://www.shns.com
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