Wednesday, June 7, 1995
LIFESTYLES
UNIVERSITY DAILY KANSAN
CHRONIC
Edmee Rodriguez / KANSAN
Charles Yockey, chief of staff at Watkins Memorial Health Center, designed this stool as a metaphor for the healing process. Each leg contains an aspect of healing (physical, spiritual and mental) and supports the word "health."
Continued from Page 1B
are completely psychological.
Yockey said that the problems that plague diagnosis of diseases in general further confounded identification of CFS.
"The biggest problem in medicine is the debate between cause and effect." Yockey said. "Which is the cart and which is the horse?"
Yockey said that one of the most frequent complaints that accompanied fatigue was depression. But is the depression caused by the fatigue or vice versa? He said that of all the people who feel fatigued but who have completely normal physical lab tests, thus tagging them as potential CFS sufferers, 75 percent actually are clinically depressed instead of chronically fatigued.
Such uncertainty about the disorder has led some doctors to dismiss chronic fatigue as imaginary. An August 1993 report in Redbook magazine found that 30 percent of doctors viewed chronic fatigue syndrome as little more than a yuppie manifestation of simple depression.
I've met some of those doubting doctors. Some of them treated me. Some of them mistreated me.
My fatigue carried with it crashing depression. For a while even I was convinced that it was all in my head. But after months of trying to talk it out with various therapists and psychologists, I was only getting worse.
One doctor thought it would be good to start me on a series of drugs that would alter my brain chemistry. When I continued to get worse, she decided to call my parents and suggested that I would be better off if I were checked into a hospital.
I promptly left her office and never returned. I finally have found an empathetic doctor, but never did I feel so out of control, so sick and as ashamed as I did when I was being "cares" for by doctors who didn't care to find the truth.
immune system attacking itself. Others think that the disorder is caused by environment, genetics or even allergies.
--immune system attacking itself. Others think that the disorder is caused by environment, genetics or even allergies.
Yockey is a firm believer that the disorder exists.
"I think it's very real, a definite impairment," Yockey said.
As far as explaining a cause, Yockey agrees with a growing number of physicians who believe the illness has many causes.
"I don't think for a minute that there's only one cause for CFS," Yockey said. He added that there are too many symptoms and too many differences among the patients who have CFS to believe that there is only one cause.
Dr. Edwin Jacobson presented a similar theory in March during a seminar for medical professionals.
He tends to agree that CFS is multicausal.
Jacobson said 150,000 to 720,000 people suffered from severe fatigue each year, but these cases weren't serious enough to classify as CFS.
Causes for standard fatigue can include irregularities in biochemistry or metabolism, overexposure to chemicals and toxins, deficiency in neurotransmitters, a dysfunction of any major organ system, stress, and drug allergies or addictions, Jacobson said.
As for chronic fatigue, Jacobson theorized that any or all of these factors could conspire and cause the extended, multi-symptomatic fatigue of CFS.
Other doctors believe CFS has its genesis in some kind of viral infection. Brewer said that the initial belief that CFS was a virus caused it to be categorized as a part of his infectious diseases department at St. Luke's.
"One of the leading theories is that it is infectious and that it is viral," Brewer said.
Historically the virus that has received the most scrutiny is the Epstein-Barr virus, which causes mononucleosis. But recent research has proven that Epstein-Barr is not a singular cause of CFS. Some doctors believe that chronic fatigue is actually the body's own
Brewer said his experience at St. Luke's made him leery of allergy explanations for CFS.
"People get really carried away with that one," he said. "People can say they're allergic to the vinyl wall paper, and the theories can just go on and on."
He does support, however, the possibility that CFS is caused by some failure of the immune system.
The only certainty shared by all is uncertainty.
"There is no known cause for chronic fatigue," Yockey said. "In the final analysis, we may never know the exact cause."
Vockey has a visual aid that he uses with all his patients who have chronic fatigue. It's a three-legged stool that he made in his garage. He says it illustrates healing, especially for a disorder like chronic fatigue syndrome.
There are few certainties with CFS, but this list of questions and answers compiled from books, magazines and interviews with medical professionals may help.
Questions?
Each of the legs has a different label: physical, emotional and spiritual.
If I have chronic fatigue, how long does it last?
Can I get well?
His white lab coat billowed a bit as he tried to balance his chair on two legs. He demonstrated that it takes all three legs to sit in good
The syndrome has an erratic pattern of attack and retreat. The average duration of the illness is 2.9 years with lower and upper limits recorded at six months to 1.3 years. Physicians note that the sharpest decline in health comes in the first few years of the disease.
Is CFS contagious?
A certain answer can't be had until a positive cause has been found, but there is no evidence that the syndrome is contagious.
The syndrome usually strikes people in their 20s or early 30s. Based on statistics from case studies, women are twice to three times as likely as men to develop CFS.
Demographic studies have also shown that Caucasians are more likely to be diagnosed as having CFS than people of other races.
Joseph Brewer, physician and infectious disease specialist at St. Luke's, warns that these statistics may be warped.
health.
Who is affected?
"I a relatively amdent person who makes $10,000 a year in a stressful, high-tech job gets sick... that person is not going to just sit idly by." Brewer said.
"That's the sort of person who will go to the doctor, slam his fist on the desk and say, 'I want an answer!'"
A second school of thought, the one that believes the original cause of CFS is viral or allergenic, believes a complete cure could come from a change in diet. Yockey believes in a variety of treatment methods that include more rest, exercise and the use of antidepressant drugs. But he also believes that the doctor must give the patient a large dose of empathy.
"It's difficult and fatiguing to try and do," he said.
Of those doctors who have a regimen of treatment, the great majority believed the only treatment was treatment of individual symptoms. This could mean pain-killers for flulike aches and pains, sedatives to help regain a normal sleep pattern and antidepressants to help with the psychological stress.
Then with a bit of a lunge he went up on one leg, for a split second. "THAT is unlucky."
He also said national surveys of varied demographics aren't yet available.
With his chair safely back on the ground, he said the best cure for chronic fatigue syndrome would come when each patient found a way to put all three legs on the ground.
Susan Levine, a physician who estimates that as many as 30 percent of doctors don't even believe in the disorder, also estimated that of those doctors who did believe the syndrome was real, only 10 percent would treat it with anything more than bed rest.
I was amused by Yockey's gyrations, but in his metaphor and his demonstration I saw an image of myself wobbling unsteadily through my illness. I saw a picture of myself trying once again to have my legs planted firmly on the ground.
As many theories as there are about CFS, there is no cure for the syndrome. But for each theory of causality there are different theories for treatment.
The patient needs an understanding empathic physician, he said.
Yockey said he understood how frightening a disorder like CFS could be. The patient needs to hear the doctor say, "I believe you, and I understand what you're going through," he said.
"We haven't dug into it deep enough," Brewer said.
An empathetic approach can keep patients from what Yockey calls "doctor shopping," or getting sicker as they search for a doctor who believes them when they say they're in pain.
Yockey also said the mental desire of the patient to be well again could be more powerful than any
Defining the disorder
For decades chronic fatigue syndrome was mysterious and misunderstood. In 1988, the Centers for Disease Control, the federal public health agency in Atlanta, published an official definition of CFS.
According to the Centers for Disease Control and Prevention, two major criteria must be fulfilled before an official diagnosis of chronic fatigue can be made;
1. The onset of "persistent or relapsing, debilitating fatigue." The fatigue is severe enough to reduce a person's daily activity to less than 50 percent for at least six months.
2. Other medical conditions that could produce similar symptoms must be excluded through examination and testing. Specific conditions that the CDC says must be eliminated first include:
CBC says must be enlarged
• autoimmune diseases
- autoimmune diseases
- localized infections
- AIDS, or HIV-related infections
- a parasite disease like Lyme disease or tuberculosis
  or HIV related infections
- sis or schizophrenia
- chronic psychiatric diseases such as depression, neuro-
neuropsychia
- drug abuse
- multiple sclerosis
- diabetes
- any other known chronic pulmonary, cardiac, or blood-related disease.
The CDC also requires that a patient report six or more of the following symptoms. These, too, must have persisted for more than six months:
1. Mild fever or chills
2. Sore throat
3. Painful lymph nodes
6. Generalized fatigue lasting 24 hours after light exercise
4. Unexplained muscle weakness
7. Headaches that differ in type or severity to those prior to illness
8. Severe joint pain without swelling
9. At least one neuropsychological complaint such as excessive irritability, confusion, inability to concentrate or depression
10. Sleeve disturbances
The following symptoms must be documented by a physician on at least two occasions, at least a month apart;
1. Low-grade fever (between 99.5 and 101.48 degrees Fahrenheit)
2. Inflammation of mucous membranes, throat or upper respiratory
3. Palpable or tender lymph nodes
amount of medication.
"We can't choose the things life deals us, but we can choose how we deal with them," Yockey said.
I write the final draft of this article surrounded by thatched piles of papers and photocopies. I've been too tired to organize them or clean them up. Diluted sunlight cascades through my blinds and cuts bars of light on the floor.
I've been lucky the last few weeks. I've been able to see a little more sunshine. But there are still times when fatigue and depression drift like clouds in front of that light.
I've been able to research and write this article. I feel tired
now. My bed sits in the corner,
unmade and inviting,
I hope those of you who feel that some debilitating fatigue have had the strength to finish this article. I hope it has provided some answers or at least sparked some new questions.
I know what you're going through. This article is as much help as I know how to offer you. I hope you can find an emphetic doctor, one who can help you through this hard time.
I hope you make it out of the shadow and see a little more sunshine.
As for me, I'm tired. I'm closing the blinds and heading for bed. I need a nap.
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