Myalgic encephalomyelitis

Press, 14 April 1984, Page 19

Myalgic encephalomyelitis

No longer is “Tapanui ’flu” Otago’s mystery illness. Bat though the disease has been identified, and may well be widespread throughout New Zealand, it continues to baffle doctors, sufferers, and researchers. JMedicine has invented a jawbreaking name for it — myalgic encephalomyelitis, or M.E. It is one of the most mysterious, debilitating, incurable illnesses known to humankind. An estimate of 1000 sufferers in Otago — an informed guess which a leading authority on the disease in New Zealand at the Otago Medical School stands by — makes this one of the world’s worst epidemics, if cases are confirmed. Medical authorities say M.E. can now be diagnosed accurately, by careful evaluation of a patient’s medical history, blood test results, and symptoms. They see no need

for anyone to undergo a prolonged period of uncertainty, not knowing what is wrong with them. The first recorded epidemic was in Los Angeles in 1934. Since then, more than 50 outbreaks have occurred in 10 countries — in hospitals, schools, factories, military bases, institutions, and in regions. It can also strike sporadically. It has been known by various names, including Royal Free disease (in 1955, at the Royal Free Hospital, London, 292 staff members were struck down), Icelandic disease, and epidemic neuromyasthenia (in the United States). Controversy surrounds M.E. which, because of no laboratory test to aid diagnosis, has often been dismissed as due to mass hysteria, or simply, imagination. Generally, the disease follows an earlier virus infection, or other illness. It can be mild and last only

a few weeks, or can be incapacitating for as long as 30 years. More than 60 possible symptoms, affecting all body systems, including the brain, have been noted. Some doctors call it a “syndrome.” Aching and weak muscles, as well as profound fatigue, is common to most sufferers. Present relevant laboratory tests may or may not be positive, and diagnosis has to be based on excluding other possibilities and the patient’s history and symptoms. The disease is thought to be caused by an immune disturbance brought about by an abnormal response to a virus. (The immune

system keeps the body in a state of balance whereby all systems function properly.) During an acute attack, many sufferers say they feel as though they are dying. But the disease is not fatal, and acute phases pass.

The results of blood tests can give a hint that a patient is not complaining for the sake of it. Sometimes, when tests do not provide some doctors with an explanation of bizarre symptoms, they write off patients as neurotic, referring them to psychiatrists. Dr A. M. Ramsay, an English physician, says this seldom proves helpful and is often harmful. He

has records of three patients in whom the disbelief of their doctors and relatives in the validity of their symptoms led to suicide. About one-third of 70 Otago people who believe they are sufferers surveyed by an Otago Medical School team have a spouse, parent, or child with the disease, suggesting what is termed “an infective agent.” The survey concludes that victims are infected by what it calls “Coxackie virus” which affect the central nervous system and the muscles.

“For some reason, the resulting illness persists for months, and

may in some individuals cause permanent damage to the immune system, and food allergies. “There is no positive diagnostic test and no known treatment, though dealing with allergies may prove the ultimate answer.” Just how one gets the disease and for how long seems to depend on individual physical make-up, and on such factors as how much rest is taken, particularly early in the onset of the disease.

If during a recovery phase too much exercise is taken, this can set the patient back weeks or months. Unlike multiple sclerosis, MJE. is not progressive, and prospects for recovery are relatively good. Even

so, some people follow a course of remission followed by relapse, while severe cases may be bedridden for months or years. Lay initiative, particularly in Dunedin, seems to be well ahead of the Health Department in investigating the extent of ME. and bringing possible relief to sufferers. Dr Peter Hinds, medical officer of health there, says a small number of cases which might be ME. are reported by general practitioners. He says a lot of people suffer from post-viral syndrome and doctors say they expect this and can treat symptoms effectively. The estimate of 1000 cases “needs to be thoroughly investigated by a survey of doctors.” Christchurch’s medical officer of health. Dr W. Malpress, says while he is open to any information, he is unaware of cases of ME. being

diagnosed in his health district. The professor of general practice at Otago Medical School, Dr Campbell Murdoch, arrived from Edinburgh last year and by coincidence came with first-hand experience of ME. Several epidemics of the disease in Scotland have prompted research at the Glasgow Institute of Neurological Sciences with which he is familiar. The professor has not onlv surveyed ME. sufferers in’ the Dunedin area, but has mounted a research project which could well provide leads to more effective diagnosis. By analysing sufferers’ symptoms and comparing them with those of a control group, a diagnostic index, or score system, is being prepared. This should enable doctors to say who definitely has the disease, who might have it, and who certainly does not.