By Eleni Berger, CNN
Imagine getting only three or four hours of sleep a night for eight years. Then having a pain as severe as a toothache throughout the entire body at the same time. Add to that the feeling that memory is fading.
That's what life can be like for people who suffer from chronic fatigue syndrome (CFS), says Dr. Jacob Teitelbaum, an internist who specializes in treating this mysterious illness.
"This is a serious disease that can destroy people's lives," says Teitelbaum, who directs the Annapolis Research Center for Effective Fibromyalgia and CFS Therapies in Annapolis, Maryland.
He became interested in the illness after succumbing to it in medical school in 1975.
"There was not even a name for it back then," recalls Teitelbaum, who says he battled the disease for years before being cured.
Poorly understood and difficult to diagnose
Characterized by debilitating fatigue that doesn't improve with bed rest, chronic fatigue syndrome usually is accompanied by a number of other symptoms, including muscle pain, weakness, memory impairment, joint pain and insomnia, according to the Centers for Disease Control and Prevention.
The illness is thought to affect 500,000 to 800,000 Americans, according to health officials, though some advocates say the number of sufferers is much higher.
Whatever its prevalence, the condition is poorly understood and difficult to diagnose.
Unlike other diseases, a blood test can't determine definitively if a patient has the condition, Teitelbaum says. Moreover, many symptoms are common to other diseases so doctors first must rule out other explanations for the illness.
But Teitelbaum says many doctors don't recognize the condition when they see it. He likens treatment to the early days of multiple sclerosis and polio. Those diseases were not immediately recognized as serious medical conditions, he says, but dismissed as the effects of psychological problems.
As many as 90 percent of patients who have the disease have not been diagnosed and are not being treated, according to the Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) Association of America, an advocacy group.
The group recently surveyed 8,100 medical professionals across the United States and found that 77 percent of them said the amount of education doctors receive about the condition is inadequate.
"Unfortunately for most patients, the standard treatment is to be told, 'There's nothing wrong with you,' " Teitelbaum says.
Other advocates agree problems exist.
"There are seriously ill patients out there who are being dismissed as malingerers or hypochondriacs," says Jill McLaughlin, executive director of the National CFIDS Foundation, a grass-roots organization that works to raise awareness and promote research of chronic fatigue syndrome.
What's in a name?
One of the main reasons chronic fatigue syndrome isn't taken as seriously as other diseases, advocates say, is the name itself.
"No matter how much you describe it, the name undermines every definition you can give of the illness because fatigue isn't an illness," McLaughlin says. "You can't convey the clinical severity of a disease whose name connotes tiredness."
Kim Kenney, CEO of the CFIDS Association of America, agrees. Often, she says, people don't grasp the impact of the condition until they see the dramatic change in a sufferer who was once healthy.
But there are other difficulties.
The disease was discovered in the early 1980s around the same time as AIDS. But unlike AIDS, no causative agent such as HIV has been found that can become a target of research, Kenney says.
"There is no body count" to capture public attention, she says.
"People who die from [chronic fatigue syndrome] — it's often suicide that's involved," Kenney says. "They've lost family, friends, jobs and choose not to go on anymore."
Focus on more research
So what can be done to help people who suffer from a debilitating condition that few doctors recognize or understand?
First and foremost, advocates say, is a need for more research. Doctors must determine what causes the condition — a virus, immune system dysfunction, hormone dysfunction, brain abnormalities or other factors — before they can find a cure.
In the meantime, patients have to make due with a patchwork of treatments that target various symptoms.
Typically, patients initially are treated for insomnia since sleep disruption often makes other symptoms worse. They're also given pain medication and treated for any infections.
Teitelbaum focuses on proper nutrition and on regulating the activity of the hypothalamus — a "control center" in the brain that affects sleep, hormones, immune function and other functions.
Even alternative therapies such massage, cognitive therapy or lifestyle adjustments can be helpful, Kenney says.
But raising awareness about the nature of the disease, advocates say, is as important as funding research and improving treatment.
"It's a serious illness. It's a complex illness. It impacts nearly every system in the body," Kenney says. "It's worth learning more about because chances are somebody you know is dealing with it."