Sacramento Bee – October 5, 1993

 

Wipe-out

By Wanda Benedetti

Karen Lang thought she might be crazy. After all, that’s what the doctors were telling her.

 

In 1989 the competitive master swimmer suffered flulike symptoms, fevers and a sore throat.

 

Once able to swim 4,000 yards a day, she was so tired she could barely pull herself out of bed.

 

But a battery of tests said one thing only — she ws a healthy woman. And after repeated visits to her doctor, he finally told her that what she really needed was a psychiatrist.

 

“I walked out of that office– I was furious with him.” Lang says, “But I also was afraid he was right.”

 

When Lang tells this story four years later, she explains that even today she sometimes finds herself completely lost in her own hometown. She can’t read a book because she forgets the previous paragraphs and says her children have to remind her to turn the oven on after she puts dinner in.

 

But the Sacramento mother of three now knows she isn’t crazy — she has chronic fatigue syndrome.

 

There is no cure for the disease.

 

While the malady manifests itself in a variety of forms, sufferers usually complain of fever, muscle and joint pain, swollen glands, pounding headaches, difficulty thinking and memory loss.

 

And as its name implies, overwhelming fatigue virtually chains many sufferers to their homes and beds.

 

“When you wake up in the morning you have to decide, am I going to take a shower or eat breakfast because I don’t have the energy to do both.” says Roblyn Lefler, head of the Roseville chronic fatigue support group.

 

Cindy Stratton, leader of the Sacramento support group, was bedridden for about six months with crushing exhaustion, fever and headaches that struck her in 1986. The disease left her unable to work for a year.

 

There is no cure for the disease.

 

While the malady manifests itself in a variety of forms, sufferers usually complain of fever, muscle and joint pain, swollen glands, pounding headaches, difficulty thinking and memory loss.

 

And as its name implies, overwhelming fatigue virtually chains many sufferers to their homes and beds.

 

“When you wake up in the morning you have to decide, am I going to take a shower or eat breakfast because I don’t have the energy to do both.” says Roblyn Lefler, head of the Roseville chronic fatigue support group.

 

Cindy Stratton, leader of the Sacramento support group, was bedridden for about six months with crushing exhaustion, fever and headaches that struck her in 1986. The disease left her unable to work for a year.

 

And for Lang there is an added stress. Her 14-year-old son has the disease too.

 

Since he came down with it in 1990, her son, who asked not to reveal his name, has missed the better part of three years of school. Unlike most boys his age, he can’t play basketball and must face the normal challenges of studying while struggling with the “brain fog” that accompanies the syndrome

 
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“What is really tough is worrying about what is going to happen to my son.” Lang says. “His academic future is at great risk.”
The stories go on and on. Lefler and Stratton together lead about 120 members in two groups, members whose conditions have been just as bad, if not worse, than their own.

 

And while they won’t die, they probably won’t live their lives the same way, either.

 

For some, the loss is too much. Sacramento doctors who regularly treat chronic fatigue patients say suicide is the most common form of death from the syndrome.

 

According to the Centers for Disease Control and Prevention, chronic fatigue syndrome tends to strike after an illness or traumatic event. No one knows for sure what causes it, but the theories seem to be as varied as the symptoms.

 

Viruses, immune disorders, parasites, environmental toxins, a genetic predisposition, a malfunctioning limbic system (a part of the brai that controls emotions, behaviors and other things) — researchers think one or all of these may be at the root of the problem.
Chronic Fatigue Syndrome has broken out in clusters at least seven times in Northern California since 1975, according to information published by the Nightingale Research Foundation, a nonprofit group that studies chronic fatigue syndrome, and the CDC

 

The first and most prominent outbreak was documented at Mercy San Juan Hospital in 1975.

 

Dr Erich Ryll, a Sacramento physician who headed the outbreak investigation, said approximately 200 hospital employees came down with the disease.

 

Since then, cases have been reported in Truckee, Placerville, Sonora, Roseville, Elk Grove and most recently, in a downtown Sacramento office complex.

 

The CDC is investigation the Twin Towers state office buildings at 714 and 744 P St. Dr Keiji Fukuda, the medical epidemiologist at the CDC who oversaw the study, said a survey of the buildings completed in June turned up 17 people with chronic fatigue syndrome.

 

Dr William Reeves, principal investigator for the CDC’s Chronic Fatigue Syndrome Program, said the organization is in its third year of a chronic fatigue study to determine the prevalence of the disease.

 

So far, it appears two to seven out of every 10,000 adults over 18 have the disease in the four cities the CDC studied. Reno, Atlanta, Grand Rapids Mich, and Wichita, Kan. Ninety seven percent of the patients were white and 85 percent were women, Reeves said.
Rutherford said the same percentages probably hold true for California and the Sacramento area, meaning roughly that between 400 and 900 people suffer from the disease locally.

 

“It just seems like every time I turn around someone has it or knows someone who has it.” Lefler says.

 

For years, chronic fatigue syndrome was dismissed as a “yuppie flu,” so named because it seemed to attack young professionals.
Despite a growing acceptance of the syndrome as an authentic disease, both patients and chronic fatigue specialists complain that most doctors still lack the knowledge and compassion to help those suffering from it.

 

“I’m sick of doctors saying it’s in your head,” Lefler says. “If they can’t chart it in their tests, then it doesn’t exist.”

 

Dr Jay Goldstein, director of the Chronic Fatigue Sydnrome Institute in Anaheim, said the elusive nature of the disease, with its multiple symptoms and unknown cause, is at the root of the problem.

 

“It’s almost like saying the person is possessed by demons, when they have chronic fatigue syndrome.” he said. “Doctors have a poor tolerance for that sort of ambiguity. They feel uncomfortable with situations they can’t understand and they can’t control.”

 

Dr Fred Herman, and immunologist in Roseville, believes that many physicians in Sacramento don’t believe in the disease or aren’t educated enough to help those with it.

 

And Lang wonders how many other young children like her son have been told they aren’t really sick, they just have “school phobia.”
Herman plans to present a seminar on chronic fatigue syndrome in November, and hopes it will help physicians and medical personnel learn how to properly diagnose patients.

 

But as mainstream medicine has failed them, many syndrome sufferers have turned to less traditional treatments, — some beneficial, some not.

 

“A lot of these patients are desperate, so they are susceptible to charlatans that offer them a cure.” Herman said. “There is no cure and they need to be aware of that.”

 

Maryann Turgeon says she traveled to a clinic in Mexico to have hydrogen peroxide dripped into her bloodstream. The former Thousand Oaks kindergarten teacher who now gives seminars on the disease says the treatment didn’t work and her hair fell out.

 

“People are so desperate when they get to that point that they will try anything,” she said, explaining how she lost her house to the medical bills she ran up in her search for a cure.

 

But Turgeon and others with the disease have found some relief in treatments such as relaxation techniques, gentle massages and nutritional supplements.

 

And for Lang, both a sense of humor and an acceptance of her situation has helped her survive.
“You can’t get well until you accept where you are.” she said.