Chronic fatigue syndrome more than being tired

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Chronic fatigue syndrome more than being tired

By Eleni Berger

CNN

(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. 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 polis Research Center for Effective

Fibromyalgia and CFS Therapies in polis, land.

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. "

Find this article at:

http://edition.cnn.com/2001/HEALTH/conditions/12/24/chronic.fatigue/index.ht

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