Sufferers of Chronic Fatigue Syndrome Face Learning to Relearn : Health: Laguna Beach neuropsychologist works to help patients crippled by memory loss and distraction.

By LESLIE BERKMAN

Jan. 31, 1993 12 AM PT

TIMES STAFF WRITER

LAGUNA BEACH — The doctoral candidate in psychology was studying for a strenuous oral examination when she fell sick with fever and exhaustion.

After three months of bed rest, the high-achieving student picked up an issue of People magazine and couldn’t comprehend it. And she could no longer follow the story line of television soap operas.

“It was scary,” recalled Janice, 30, of Upland, one of hundreds of thousands of people who have a little-understood disease called Chronic Fatigue Syndrome.

There is no cure for CFS, which often starts with flu-like symptoms but ultimately may sap the energy of its victims, as well as their ability to learn and to function at home and work. Both the cause of the disease and whether therapy has any effect are the subjects of some controversy.

Janice, who like other victims of the disease did not want to give her full name, is a patient of Linda Miller Iger, a neuropsychologist in Laguna Beach. Iger has dedicated most of her practice to helping victims of Chronic Fatigue Syndrome discover new ways to carry on with their lives.

Iger, who said she has treated 450 CFS patients over the past six years, said their symptoms profoundly distort their view of the world. They are overwhelmed by bright lights and other sensory stimuli around them. They have difficulty carrying on a conversation in a crowded room or choosing food in a supermarket. They have trouble shopping in large malls or comprehending a full page of print without focusing on one line at a time.

And they have problems judging distances and following directions--a disability that Iger said leads about 25% of her patients to give up driving altogether.

They also experience the terrible insecurity that comes from short-term memory loss. Iger says she has worked with a school principal who couldn’t remember the names of teachers, lawyers who couldn’t remember their legal arguments in court, a chemist who couldn’t remember how to calibrate his instruments and a professional pianist who forgot 16 bars in the middle of a concert.

An acute sufferer of CFS is Jan, 37, from Mission Viejo, who resigned from a job she loved as a computer analyst. Although she felt memory loss creeping up, Jan said, one day everything fell apart.

“I couldn’t remember where I parked the car or what building I worked in or my boss’ name,” she said. Adding to her frustration, she said, “I went to the doctor and got lost on the freeway.”

Tom Williams of Loma Linda, who was willing to allow his full name to be used, said he gave up a job as a health care administrator when, in the middle of staff meetings, he would forget the topic under discussion.

Jan and Williams, both patients of Iger’s, said they are now unemployed and trying to rebuild their lives while dealing with a disease that waxes and wanes without warning.

Iger, who has adapted many of the techniques used to rehabilitate people recuperating from strokes and head injuries, said her patients need to “relearn how to learn.” She uses whatever memory reinforcements are necessary, from tape recorders to study carrels that block out distracting sounds, to win that skill back for them.

They “cannot wait for medical research to find a magic bullet to wipe out CFS. They need help now,” she said.

But Curt Sandman, a neuropsychologist and professor of psychiatry at UCI College of Medicine, is skeptical that any of the therapy techniques work.

“The attempt to develop rehabilitative therapies for Chronic Fatigue Syndrome is in its infancy,” Sandman said, adding that no scientific study has been published showing therapy makes a difference.

Iger concedes that until larger numbers of patients can be systematically tested, the kind of evidence Sandman demands will be lacking. But Iger said she is convinced that the techniques she has been using have helped her patients take giant strides toward more normal lives.

Janice, for instance, has learned to read again and has passed her oral examinations. Although she still has limited energy, she is confident she will be able to pursue a career as a child psychologist.

“I expect to be invited to her graduation within the next year,” Iger said.

The Centers for Disease Control and Prevention has spent three years looking for the disease by studying the populations of Grand Rapids, Mich.; Atlanta; Wichita, Kan.; and Reno. Preliminary results of that study show that between two and seven of every 100,000 adults suffer from CFS.

But what causes the disease is unknown.

“There is no scientific consensus,” said Dr. Keiji Fukuda, an epidemiologist with the Centers for Disease Control and Prevention.

Theories among medical researchers about what triggers CFS, Fukuda said, range from a dysfunction of the immune system to a viral infection to a form of depression. There also seems to be a relationship between stress and CFS, Fukuda said, but it is difficult to determine which comes first.

One of the first things Iger teachers her patients is how to relax and pace their daily activities to make the most of their extremely limited energy.

Williams, formerly a self-described “workaholic,” said he rebounded from deep depression by accepting his predicament.

“I had to face up to the fact I had an illness. I didn’t have to like it. But I had to accept it,” he said.

He also slowed his life drastically, allowing himself 10 to 12 hours of nightly sleep supplemented by midday naps. “If I tried to do the same things I had always done, I would only make myself sicker and worsen my memory. I needed to give my body a rest.”

Jan said she has learned to cope with her lapses of memory on bad days by making preparations on days she is thinking more clearly. She writes step-by-step “recipes” that instruct her how to perform such everyday tasks as making dinner or feeding the cat.

Janice, the psychology graduate student, said, “Life for me now is a lot of planning ahead.”

Spotting Chronic Fatigue

Here are some of the symptoms that could indicate the presence of chronic fatigue syndrome. Fatigue lasting six months that diminishes activity up to 50% Low-grade fever (99.5-101.5 degrees Fahrenheit) Sore throat Generalized muscle weakness or pain Lasting fatigue 24 hours after exertion Headache Traveling joint pains Neuropsychological complaints: blind spots in vision, bright lights that hurt eyes, forgetfulness, excessive irritability, difficulty thinking, inability to concentrate, depression Source: Centers for Disease Control and Prevention Researched by CAROLINE LEMKE / Los Angeles Times