CFS: Chronic Fatigue Syndrome

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CFS: Chronic Fatigue

Syndrome

Mysterious illness leaves sufferers feeling physically and mentally drained

By Darla Carter

dcarter

 

The Courier-Journal

 

A sharp student-athlete with a head for figures and a passion for playing

tennis who loses the ability to understand math and the energy to get out of

bed.

A grandmother who can't walk around the block with her 5-year-old grandson

without feeling wiped out -- 24 years after first being struck with pain,

confusion and disabling fatigue as a graduate student at Howard University.

These are both examples of people with chronic fatigue syndrome, a

debilitating but nonfatal illness that affects at least 1 million Americans.

 

It's four times more common in women than in men, but it can affect any

gender or race. Though more common in people ages 40 to 59, it also strikes

teens like Andrew Peak, 18, of Jeffersontown, who struggled with CFS in high

school.

" I would almost describe it physically and I guess mentally, too, as just

like constantly carrying around a load of bricks, " he said.

Peak excelled in academics and tennis before CFS and a similar condition,

fibromyalgia, sapped him of his stamina.

" My eyes, especially, felt very heavy, very often, and I would get to the

point where I was exhausted. "

Everyone can relate to occasionally being worn out, but people with CFS

experience profound tiredness that lasts for at least six months,

interfering with their ability to function. They also have to deal with

mental roadblocks, such as memory and concentration problems, that played

havoc with Peak, a recent graduate of Manual High School.

Despite having been an ace at math, when his CFS symptoms reared up, " I

would often forget formulas very quickly, " he said. " I would even

forget

just certain values that I had to plug in for equations. "

Also, " it would be very hard for me to synthesize and put things

together, "

he said. " So while I could carry on a conversation about something, there

were times where my thought process would just be blank. "

CFS is mysterious: Its cause is unknown and there's no definitive test for

the illness.

But the U.S. Centers for Disease Control and Prevention is convinced of its

validity and has launched a campaign to draw the public's attention to the

illness.

Awareness campaign

The multimedia campaign, which includes radio and television advertisements,

is designed " to raise awareness about the illness, not only among the

public

but among health-care providers, " said Marcia Harmon, a spokeswoman for

the

CFIDS Association of America, a charitable organization collaborating in the

campaign.

" CDC research has shown that chronic fatigue syndrome is more prevalent

than

multiple sclerosis, lupus, ovarian cancer and a number of other chronic

illnesses and that it can be really disabling, " Harmon said.

Yet, less than 20 percent of Americans who have the condition have been

diagnosed, according to the CDC.

The campaign features a traveling exhibit, showcasing pictures of CFS

patients, and also includes information on how to diagnosis and manage the

illness.

" Because there is no lab test for CFS, there are doctors who don't feel

comfortable diagnosing it … so we are trying to educate them that there

is a

reliable diagnostic algorithm that they can use, " Harmon said.

Symptoms tend to get worse with mental or physical activity. " Let's say

they

do more on a certain day -- like they do more shopping or they try to clean

the house more or they're trying to be more productive at work. … The

next

day, they're wiped out for a whole day, " said Dr. Lesley Arnold, an

associate professor and director of the Women's Health Research Program at

the University of Cincinnati College of Medicine.

Other symptoms include sleep problems -- not waking up feeling refreshed --

muscle and joint pain, headaches, tender lymph nodes and sore throat, Arnold

said. A person also may have a co-existing condition, such as fibromyalgia,

which often overlaps with CFS.

" We try to make the diagnosis early because in terms of outcomes, we think

that the prognosis is better if treatment is early, " she said.

A study planned

Arnold is recruiting participants for a study of a drug that might improve

energy levels and reduce pain in CFS patients.

Right now, " people do become disabled " because of CFS, Arnold said.

" We're

hoping to find a treatment to prevent that from happening, but certainly

some people do lose their jobs or quit their jobs. "

It's important for people who experience symptoms to get a thorough work-up

because many other conditions, such as thyroid dysfunction and depression,

have fatigue as a symptom, said Dr. Michael Guirguis, an internal medicine

specialist with Baptist Medical Associates.

Sometimes, as tests come back normal, patients are told that " nothing is

wrong " with them, or " Oh, it's all in your head, " said Dr.

Kenneth Schikler,

a pediatric rheumatologist in Louisville who treats children and adolescents

with CFS. But " it's not imaginary. "

" There have been some recent studies that suggest there are at least a few

genetic markers, " which can't be tested for in a doctor's office, said

Schikler, a University of Louisville professor.

The markers are related to " neurotransmitters in the brain or how our

bodies

relate to stress, " he said.

The CDC notes on its Web site: " After more than 3,000 research studies,

there is now abundant scientific evidence that CFS is a real physiological

illness. "

Such statements by the CDC make a big difference for patients, said

Wilhelmina Jenkins, an Atlanta grandmother and former CFIDS Association of

America board member who's had the condition since the early '80s.

" After you've heard nonsense for so many years, to actually hear somebody

acknowledge that this is a real, serious public health issue means more than

I could have guessed, " said Jenkins, who has an adult daughter with the

condition. " It's hard to overestimate how important it is to be able to

walk

into a doctor and say, 'The CDC says.' "

Exercise can help

Though there is no cure for CFS, some patients respond well to a gradual

dose of aerobic exercise, said Schikler, who sees patients at Kosair

Children's Hospital and Frazier Rehab Institute's Center for Pediatric

Fatiguing and Painful Conditions. The exercise helps to recondition the body

promote the production of beneficial hormones and reorient the autonomic

nervous system to respond to signals that get sent during exercise, he said.

 

Furthermore, exercise can positively effect mood, health and weight loss,

Arnold said.

" We recommend a very slow-paced program, beginning typically with

non-weight-bearing kinds of exercise, " such as walking or warm-water

aerobics, she said.

Other options include antidepressants to help with pain and improve sleep.

But there are no drugs specifically approved for CFS and some patients have

trouble tolerating the ones that are used, Arnold said, thus the need for

more research.

Cognitive behavioral therapy is recommended for some patients. " With any

long-term, unpleasant condition, getting a better understanding of the

condition as well as recognizing and developing coping skills ... is going

to be helpful, " Schikler said.

But there are no quick fixes for CFS patients. It often takes months before

a patient gets back to feeling well, he said.

Some studies suggest that 40 percent to 60 percent of people with CFS

achieve partial or total recovery, but there's little long-term data

available.

Some people get better on their own, without help from a doctor, Schikler

said, but " I'd like to think we hasten … recovery. "

Because symptoms tend to be cyclical in nature, it's important for CFS

patients to understand that they are prone to redeveloping them after a

period of wellness, he said.

But patients can work with their doctor to minimize future symptoms. " Once

you've recovered, you know what to watch for and how to head it off at the

pass so that it never has to get as bad as it got the first time, "

Schikler

said.

To treat or not

Whether to get treated is up to the patient. " It all depends on how poorly

you feel, " he said. " If you have somebody who hasn't been to school

in five

months because they just can't get out of bed and they feel miserable, then

it might be worth (it). "

After going through multiple doctors to get diagnosed, it took about a year

for Peak's condition to improve markedly with treatment, said his mother,

Ann Peak. His regimen includes the antidepressant Cymbalta; therapy; and 40

minutes of exercise a day, which helps with his alertness, he said.

Exercise doesn't work for Jenkins, 57, the Georgia grandmother who developed

the condition in 1983. At the time, she was a graduate student, studying

physics at Howard University, and suddenly couldn't understand basic things,

such as comic strips.

Driving to familiar places, she would get lost and end up sitting in the car

crying. " It was terrifying. I had no idea what was going on, " she

said.

Today, she takes medicine that lessens her symptoms, but a variety of

problems, such as pain, vomiting, diarrhea and headaches, still bother her

to varying degrees. " You can't predict what symptoms are going to get

worse

when, " she said.

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