M. E. strikes savagely and indiscriminately

Press, 14 April 1984, Page 19

M. E. strikes savagely and indiscriminately

The outbreak of myalgic encephalomyelitis in Dunedin and districts has caused more than the great distress for those who have contracted the disease. It has also opened up a few wounds in the medical profession. Ken Coates reports.

One of the most knowledgeable and articulate people on M.E. is 42-year-old Peter Bradshaw, of Dunedin. He speaks from first-hand experience ... as a sufferer. Before becoming seriously ill in September, 1982, he led a full and vigorous life as a senior lecturer in clinical psychology at Otago University. 'His academic and personal life has been severely disrupted. But while he has suffered, he has read all available literature on the disease, talked to fellow sufferers, helped form an active support group, and investigated the mysterious disease’s effects. ,Mr Bradshaw’s public involvement began in mid-1983 when he observed from reports that the mystery illness at Tapanui seemed to be spreading. He had been ill for about nine months, his wife for two riwnths, and a friend for longer. ■•'People telephoned, and he started reading the medical literature. This gave him a clue that the illness was connected with a disturbance of the body’s immune system that enables it to combat disease. He asked himself and other sufferers what they experienced in common: all had muscle fatigue. The similarity of symptoms in 15 csses was striking. .> By November last year, a branch of the Australian and New Zealand Myalgic Encephalomyelitis Society was formed in Dunedin. With the number of known sufferers then about 20, research got off the ground.

r “Now we have 148 contacts in Dpnedin, including three families, each with at least three children, who have told us they have M.E.,” he says. Ten per cent of sufferers have spouses or partners with the disease. The literature suggests it is contagious in its early stages, and during relapses. The society, also established in Auckland, is trying to raise the level of awareness of M.E. among doctors, aid research by making sufferers available, and provide support to people trying to cope with the illness. ■•M.E. is no respecter of age or station. It has struck mothers, young children, and people in their seventies. Three in every four

sufferers are women. No more than a handful of M.E. sufferers had been diagnosed in Dunedin last November, but a telephone survey early this year showed 37 of 77 people who thought they might have it had a firm or tentative diagnosis of the disease. The society sent a pamphlet to every medical practitioner in New Zealand. People told Peter Bradshaw that their doctors now had come round to viewing symptoms differently, rather than attributing them to depression and stress.

Four main symptoms are described: muscle weakness, such as a rubbery feeling in the legs; difficulty in walking upstairs or in performing a simple task like washing dishes (some people are immobilised, and often a particular set of muscles is affected); fatigue and tiredness (sufferers cannot resist going to sleep for long periods); and all with M.E. refer to feeling “awful” at times, saying it is as if they have a dreadful hangover, or

are 100 years old. It has no set pattern in the way it affects people, or when. Its effects can fluctuate wii'l-, from hour to hour, week to weJc. Any set of 60 symptoms can impose themselves: “You may have headaches and nausea for a couple of months, and this shifts to swelling of hands and dizziness,” says Peter Bradshaw. Even now, he wakes up with nausea and his hands are so puffy he cannot close his fists; previously it was headaches and dizziness. During an attack, usually 15 to 20 symptoms are apparent, though there can be gaps between severe bouts of months or even years. But even between attacks, people are not well. Other symptoms include diarrhoea, stomach pains, and vom-, iting. Strange pains are felt in muscles, or perhaps below the rib cage. Pain can be felt in the neck and down the arms. “I could not move my left arm which became extremely painful and inflamed,” says Peter Bradshaw. Some people cannot move their neck from a pillow. Sore joints and swelling, similar to rheumatoid arthritis, is also suffered, and sore throats are common and persistent. The urinary system is affected. M.E. also strikes at the nervous system, with a tingling in the limbs or loss of sensation. Sense organs are affected, including the eyes so that vision becomes blurred and focus difficult. Reading can become virtually impossible. Ringing in the ears is common, and there can be some hearing impairment. Circulation is affected; hands will go cold, white, and clammy, as will feet.

An irregular heart-beat can make an M.E. sufferer feel as though he is falling through the bed, and muscle twitches can con-

tinue through the night. Those affected report night sweats, but with their temperature below normal.

So all-encompassing is the disease in its debilitating embrace, it also seriously affects the central nervous system. Loss of concentration is marked. Extreme irritability in mood accompanies M.E., as well as a profound feeling of depression, or sense of impending doom and inward panic. A sufferer can begin crying for no apparent reason, and can have difficulty in finding the right word, using its opposite, like “hot” for “cold.”

Not for nothing does the name include “encephalo” from the Greek, meaning in the head — a clear brain malfunction is denoted by these effects. Uncertainty of diagnosis brings a host of problems. No standard test can determine whether a person has M.E. though muscle abnormality, or abnormal immuno-globulin levels (disease-fighting substances in the blood) can be present. The sheer profusion of symptoms complicates chances of diagnosis. Perhaps a sufferer will describe five to his doctor, explains Peter Bradshaw. At the next visit, perhaps a month later, he will describe another set of five completely different symptoms. The sufferer might also have a preconceived idea of what is wrong with him and this further confuses the doctor. “In the end, the doctor says he can find nothing wrong, and this quickly gets translated into, ‘there is nothing wrong with you.’ There might be talk of a psychiatric referral with the possibility that the patient is generating his own symptoms. The patient is unlikely to return. “Out of exasperation, some doctors say patients are enlarging

their problems, and this has resulted in an anti-medical stance.” Referring a sufferer to a specialist is unlikely to provide the answer, as it narrows the line of inquiry, and not all specialists are sympathetic even to the existence of the disease. Sufferers have serious problems over employment because the disease waxes and wanes. Some have to stop work for months, and have problems over getting medical certificates for social security payments. Working solo mothers can be specially hard hit. Attitudes of work-mates and friends can make the suffeper feel like an outcast from society because M.E. is so unpredictable. “People say, ‘how can he have that dreadful disease when I saw him walking down the street large as life. He’s on the benefit, and knows which side his bread is buttered on’.” Dr Peter Behan, a Glasgow neurologist, has been researching muscle abnormalities in M.E. patients. He has shown, through using nuclear magnetic resonance apparatus, that patients have an abnormality in the way oxygen is used in their muscles. It has also been found that immuno-globulins in the blood (the antibodies that attack viruses) are more disturbed in their distribution than in normal people. Dr Behan has said there is now a

way to find abnormalities in patients in whom years ago, without such advanced techniques, a diagnosis of hysteria (imagination) would have almost certainly have been made. Necessary treatment, says Peter Bradshaw, is rest. He admits it is easier said than done. “I have had to re-arrange my life completely, with no patients; a kind of floating self-determination,” he says. “I work when I am able at a parttime job (for Environment Access for $99 a week).” Other treatment involves vitamin B injections, though he maintains there is no data to support beneficial effects. Calcium seems to help cramp, and anti-depres-sants can be of assistance for severe depression. Another curious aspect of M.E. is a tendency for patients to develop allergies to both food and drugs, even though some have no previous history of allergy. Some people with it may become allergic, say to petrol fumes or eggs, while others react to wheaten products. The allergy can show up in skin outbreaks, and in different moods. Peter Bradshaw says allergies

seem to be the product of what has hit the immune system, and may develop at the end of the first year. Some people are going to private specialists for “provocation neu-

tralising therapy.” They are being injected with small amounts of potential allergens. It is being found a neutralising effect is achieved with injections of diluted amounts of the substance causing the allergy.

Treatment given by a doctor in Masterton and another in Auckland seems to be working for some, says Peter Bradshaw. Others have had partial relief. Evening Primrose Oil, which chemical research shows seems to have an effect on multiple allergies, is also being tried. The oil, though “incredibly expensive,” may be helpful for some sufferers.

Peter Bradshaw says some doctors tend to attribute M.E. symptoms to the condition a person is left in after a viral attack, but although the disease can be contracted say, after a bout of influenza, it can come after pregnancy, an accident, operation, or other condition.

“It also just comes out of the blue, starting with dizziness and headaches,” he says. In a telephone survey of those tentatively or firmly diagnosed M.E. sufferers, 53 per cent reported having signs of the illness before the time when they became really sick. Of these, 13 felt signs were present at least a year earlier, and five estimated five or more years previously.

Peter Bradshaw sees a need to determine the proportions of the Otago epidemic so preventative measures can be devised. He urges a study of households, with information as to when the disease was contracted, the number diagnosed, as well as people reporting symptoms but not diagnosed.

No set term seems to be observed by M.E. For example, in Iceland, five years after an epidemic, 75 per cent of sufferers are still ill and their lives seriously affected. Some staff of the Royal Free Hospital in London are reported still ill after 29 years. Peter Bradshaw is perhaps luckier than some. As a man who lived an active and productive life as an academic — he headed a research unit set up by the Health Department in Britain at the University of Liverpool before coming to N.Z. — he is just now, after 19 months of M.E., starting to think about applying for a new post. It is unlikely that anyone in New Zealand has talked to so many sufferers, but he continues to express surprise that in some quarters, including some specialists at the Otago Medical School, existence of the disease is still questioned.

“They feel free to take an insulting attitude, even referring to the society as ‘a club for nutters’,” he adds.