Miriam Gallacher says that she once led an active life, working as a registered nurse in an emergency department in Hamilton, taking additional courses in nursing and, with her husband, raising three children. But all that changed dramatically during the spring of 1987. Gallacher said that she suffered from a recurring respiratory infection and, later, began experiencing blackouts, memory loss and extreme weakness. As the symptoms persisted, she was forced to stop working. Finally, in January, 1988, Gallacher's doctor told her that she was suffering from chronic fatigue syndrome (CFS), a debilitating illness that affects at least 100,000 Canadians and more than two million Americans. “I had lost the ability to be a mother,” said Gallacher, now 37. “I had lost my income. I had lost everything.”
Although the disease, which is also known as myalgic encephalomyelitis, was first identified during the 1930s, medical experts say that only in recent years have they begun to realize the full scope and severity of the condition. And now, a drug developed in the United States shows signs of being able to curb the worst effects of the illness. Known as Ampligen, the drug may be available in Canada within the next two months for research purposes.
Over the years, doctors have advanced conflicting theories about the causes of the disease. During the 1980s, some doctors contend-
ed that the Epstein-Barr virus, which causes infectious mononucleosis, a viral infection with similar symptoms, also caused CFS. Researchers have also suggested that the polio virus was responsible for the condition. And different theories still abound. Dr.
Byron Hyde, chairman of the Ottawa-based Nightingale Research Foundation, a privately funded organization that promotes research into CFS, says that he believes the illness begins as a viral infection and results in a lowgrade inflammation of the brain. What is unusual is that it can be triggered by any virus that affects the nerves, brain or spinal cord, including polio, measles, German measles and hepatitis. Hyde says that the disease is “probably” contagious in its early stages.
Other specialists, including Dr. Irving Salit, head of the division of infectious diseases at the University of Toronto and the Toronto Hospital, maintain that additional factors are present when people develop the condition. Although he says that he does not believe the condition is primarily a psychiatric problem, he adds that major stressful factors, including divorce, have
been prevalent in the lives of people before the onset of the illness. His theory is that those people develop a variety of symptoms following a viral infection and, because they are already under stress, the symptoms persist longer than they normally would. Then, because of a subtle immune deficiency, which may also be the result of stress, the patients may be less able to fight off the virus. “And round and round it goes,” Salit said.
Doctors agree that although the virus affects each individual differently, its course follows roughly the same pattern. Symptoms often include memory loss, dry throat, lower-thannormal temperature, tender lymph nodes, extreme muscle weakness, fatigue and pain, headaches, sleep disturbance, confusion and depression. Sometimes, patients are also afflicted by seizures. The symptoms can last one week or become chronic, but Hyde says that the majority of patients are often able to work again within a year. More than 65 per cent of the victims are women, and a high number have had frequent contact with the public, including health-care workers and teachers.
One of the more frustrating aspects of CFS for patients has been the fact that there was no known cure. But Hyde says that two medications may help. One, an over-the-counter nutritional supplement called Efamol, which was developed by a Canadian doctor, is the seed oil from evening primrose plants. Gallacher, who takes eight of the capsules every day, said that the supplement gives her more energy and enables her to think more clearly.
According to Hyde, the experimental drug Ampligen, which interrupts the reproduction of viruses in the body, could prove even more effective. In one trial in Lake Tahoe, Nev., reported at last April’s international symposium on myalgic encephalomyelitis in Cambridge, England, doctors treated 16 patients with Ampligen. Within a year, the majority had significantly improved.
Meanwhile, specialists say that they seem to be winning the battle to make other docg tors treat CFS as a genuine a illness. During the past year, I researchers have developed s brain-mapping techniques I that can demonstrate visually I what happens to the nervous “ system in sufferers as viruses slow the flow of blood to the brain. And for the first time, the Canadian government has given the Nightingale foundation $10,000 for a one-day workshop at the University of British Columbia in Vancouver in the spring during which specialists will draw up guidelines for government action on the disease. Those are positive signs, experts say—signs that in the future, researchers may develop more understanding of what causes the condition and find ways to help victims to recapture their lost lives.
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