Exhausting Victory

byline: D'arcy Jenish

Chronic Fatigue Syndrome Wins Legal Recognition

Sharon Baillie once loved to read. Not any more. By the time she gets to page 3 of a book, she has generally forgotten what she read on page 1. She used to enjoy 25-km hikes on weekends. Now, she can barely manage a 20-minute walk with her golden retrievers, Buddy and Dusty.

Baillie, 54, who lives with friends on a farm near Redwater, Alta.,about 50 km northeast of Edmonton, suffers from chronic fatigue syndrome, a debilitating condition with symptoms that include exhaustion, memory loss, and aching muscles.

Diagnosed in May 1991, Baillie won a precedent-setting legal decision when Alberta Court of Queen's Bench Judge Philip Clarke ruled that she is entitled to disability benefits from her former employer, Regina-based Crown Life Insurance Co.

"At times I wondered if I could stick it out," she said after the March 2 decision was made public. "But I paid into their plan and I'm entitled to benefits."

Victims of CFS - more than 70 percent of them women - applauded the ruling, the first in Canada to recognize the disease as a physical rather than a psychological condition.

Although as many as 30,000 Canadians are believed to suffer from the disease, insurance industry executives say they have no way of estimating the number of claims that could be filed as a result of the decision. Meanwhile, a Crown Life spokesman said the company is considering an appeal, and other industry representatives said they will still deal cautiously with chronic fatigue claims because the condition is difficult to diagnose, and symptoms can vary widely. In fact, Doctors who treat the syndrome concede the causes are unknown and they can only treat it, not cure it.

"This is an emerging illness," says Calgary physician Beverly Tompkins, 43, who developed it herself 10 years ago and now devotes her practice to the syndrome. "Many physicians can't recognize it in a patient."

Over the past decade, several internationally recognized organizations, such as the Atlanta-based Centers for Disease Control and Prevention, have accepted the illness as a physical condition. But some doctors still maintain that it is psychological in origin.

One of Canada's leading experts on CFS, Ottawa physician Byron Hyde, describes it as "an injury to the software of the human body," meaning the central nervous system and the autoimmune mechanisms. The nature of that damage is unknown, but the disease can develop slowly or it can be triggered suddenly by another illness such as food poisoning. Some researchers believe that victims suffer from a reduction in the flow of blood to the brain which leads to fatigue, poor concentration, disrupted sleep patterns, and other symptoms.

"It has been a disaster for patients," says Hyde. "And it's going to take us another 50 years to break the disease down."

The complexity of CFS often leads to strained relations between doctors and patients, according to both Hyde and Tompkins, who treat many victims referred by other physicians. The syndrome is frequently misdiagnosed, or inappropriate treatments are prescribed. Patients can become depressed when their condition fails to improve, and doctors become frustrated when treatments don't work. "For the average physician who hasn't seen a hundred of these patients, it's a baffling disease," said Tompkins. "Most doctors don't want to deal with this illness."

Early diagnosis and proper treatment can lead to nearly complete relief from the symptoms, Tompkins adds. The best approach, she says, is to strengthen the body's natural healing powers with a high-protein, low-fat diet, built around poultry, fish, and fresh fruit and vegetables. Healthy sleep patterns must be re-established, she adds, usually through the use of sedatives. Tompkins used that approach in her own recovery. She had gone from being extremely fit and active - she lifted weights, taught aerobics, and cycled long distances - to being barely able to walk up a flight of stairs. "I read the research literature and figured out what was going on," she says. "It took me eight years, but I put together a comprehensive treatment program."

Many victims are not so fortunate. Baillie became ill in September 1989, following a bout of food poisoning during a Florida vacation. Eight months later, unable to keep up with her responsibilities, she had to resign from her job as a computer systems manager at Crown Life's head office, then in Toronto. She moved to Vancouver on the advice of her physician, who thought a change of climate might help, and was finally diagnosed with CFS in May 1991. After moving to Alberta in early 1992 - on a doctor's advice that the drier climate would help - she spent 18 months trying to obtain disability benefits from Crown Life. In November 1993, she launched a lawsuit.

> But it took more than 4 years of legal wrangling to get the case to court last February. Baillie's lawyer, Mark Feehan, called several doctors to testify about the severity of her disability and the physical nature of the disease. Crown Life called one medical witness, Cochrane, Alta., psychiatrist Keith Pearce, who told the court that Baillie suffers from a mental condition called conversion disorder, in which an overloaded central nervous system turns stress into physical symptoms.

The judge's decision was unambiguous, "CFS is not a psychoneurotic injury," Clarke ruled. "It is organic." And he said Baillie is entitled to disability benefits, yet to be specified. Feehan says his client should be receiving nearly $2,100 a month in the future, and over $210.000 in unpaid benefits dating back to May 1990, when she left Crown Life. Equally important, he says, is the fact that Baillie won a long legal battle in which the odds were stacked against her. "These people are usually broke," he says, "and they don't have the energy to fight an insurance company." Baillie was the exception, and the result was a decision that could help many other weary, financially strapped victims of a much misunderstood condition.

As printed in - Maclean's Magazine - May 4th, 1998