Living With Chronic Fatigue Syndrome 2-6-97

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Living With Chronic Fatigue Syndrome; Utah Physician Says Mysterious Malady

Has Many Causes

Salt Lake Tribune

02/06/97

BY LEE SIEGEL THE SALT LAKE TRIBUNE

Patients with chronic fatigue syndrome feel exhausted and ill. Frustrated

physicians often find nothing wrong with them, can't help them and sometimes

consider them crazy. But the patients are sick, even if doctors haven't

figured out the mysterious ailment.

``I don't know what causes chronic fatigue, but these people truly are

very disabled. That's the issue some people are forgetting,'' physician

Ries told a group of 33 doctors and other health professionals

during a lecture at the University of Utah Health Sciences Center.

Chronic fatigue likely is neither an infectious disease nor a single

disease, but instead has many causes -- medical, psychological and possibly

cultural, including exhaustion from family and job responsibilities, said

Ries, an infectious-disease professor who directs the university's AIDS

clinic.

``We have to own up to figuring out what it is for each person,'' she

said Monday. ``I'm not convinced there is any one cause.''

Zell McGee, head of the university's Center for Infectious Disease,

called chronic fatigue syndrome ``one of the most vexing aspects of

medicine. . . . We ought to be humble about the fact we don't understand

this.''

Ries and others agreed chronic-fatigue patients should keep as active as

they can. They may risk exhaustion, but their condition isn't deadly.

``You have to learn to live with it,'' Ries said. ``One of the most

important things is not to lie around. . . . People do worse when they quit

their jobs and lie around.''

Scot , a psychologist at the U., tries to help chronic-fatigue

patients deal with treatable symptoms like depression and be as active as

possible at work, home and play.

U. psychiatry professor Wender was skeptical, saying psychosocial

rehabilitation often is ineffective.

McGee said chronic-fatigue patients should manage their energy as they

manage money, doling it out to avoid exhaustion.

Chronic fatigue has been around a long time under other names, but gained

wide attention during the past decade. Ries said chronic fatigue syndrome is

defined as persistent fatigue not attributable to known diseases and that

relapses frequently, leaving patients unable to work more than half-time for

at least six months.

Other symptoms that may be reported by chronic-fatigue patients include

minor fever, sore throat, painful lymph nodes, muscular/skeletal pain or

weakness, generalized headache, sleep disorders and impaired memory and

concentration.

The definition once excluded depressed patients, but depression now is

considered a possible symptom of chronic fatigue, Ries said.

The prevalence of chronic fatigue is unknown, but each patient makes ``25

to 30 visits to a doctor each year, so it's a major economic thing,'' she

said.

Before someone is diagnosed with chronic fatigue syndrome, known ailments

should be ruled out by detailed exams, tests and questioning.

``There are a huge number of fatigued people, but for the most part we

can find reasons for it,'' she said.

Ries, who has seen hundreds of chronic-fatigue patients, said one turned

out to have AIDS, two had breast cancer and several had hepatitis C.

Other ailments that should be ruled out before diagnosing chronic fatigue

syndrome include mononucleosis, cytomegalovirus or other viral infections;

Lyme disease; an underactive thyroid gland; multiple sclerosis; and adverse

reactions to medicines or illicit drugs.

Ries hasn't found any known disorder in the majority of her

chronic-fatigue patients, but worries she may be missing something.

After an outbreak of chronic fatigue at Lake Tahoe, Calif., several years

ago, many but not all patients were found to carry Epstein-Barr virus, which

causes mononucleosis. Later, other viruses were found in chronic fatigue.

``Every time somebody finds a new virus in these people, they try to say

it's the cause,'' Ries said.

But the same viruses also are found in many healthy people, and most

experts doubt chronic fatigue is an infectious disease.

Many chronic-fatigue patients have hyperactive immune systems, and some

support groups call their ailment CFIDS, or chronic fatigue and immune

dysfunction syndrome. Ries believes chronic viral infections may help

trigger the ailment. But hyperactive immune systems also are found in some

healthy people, she noted.

How chronic-fatigue patients get diagnosed can depend on the diagnosing

doctor. Ries said psychiatrists might tell such patients, ``You're nuts.''

Endocrinologists blame hormone problems. Rheumatologists look for muscle and

joint disorders.

But Ries said chronic fatigue ``is not psych, it's not medicine, it's not

rheumatology -- it's all of them.'' She said stress, infection and

psychiatric disorders all may contribute to chronic fatigue by influencing

the body through the nervous and hormone systems.

Like McGee, she believes there may be a cultural component that puts the

chronic-fatigue label on people exhausted by the pace of modern life.

``It's not popular to be a wuss in our society,'' Ries said.

Chronic fatigue afflicts women about twice as often as men. Ries

suggested that might relate to increasing numbers of women working outside

the home and facing increased stress.

``A lot of it's low wages,'' McGee said. ``People are having to work two

jobs just to keep their heads above water financially. That's frequently

associated with disease you can't quite get a handle on.''

said he rarely sees lazy, unmotivated people with chronic

fatigue, so he wonders if sleep deprivation is a factor.

A 1995 study concluded some chronic-fatigue patients have a form of low

blood pressure, and improve when they raise their blood pressure with

medication or increased salt intake, Ries said.

She also noted chronic fatigue is similar to Gulf War Syndrome, which has

sickened veterans even though doctors haven't found a definitive cause.

Exposure to chemical weapons is among suspected causes. She said many

chronic-fatigue patients ``complain of sensitivity to chemicals.''

Ries said antidepressants help about half of chronic-fatigue patients,

but many resist taking the medicines because a psychiatric diagnosis ``is a

stigma like having AIDS.'' She said physical therapy also can help.

Most other treatments used for chronic fatigue are untested or unproven,

including allergy medications, painkillers, gamma-globulin shots,

hydrogen-peroxide injections, so-called colonic irrigations, the new

alternative-medicine fad DHEA and other ``pretty scary'' treatments, Ries

said.