A UK ME expert with 25 years experience will give at a talk in Galway at the end of the month.
Dr William Weir will speak about ME/chronic fatigue syndrome on Sunday May 30 at 2pm at the Courtyard Mariott Hotel, Headford Road, as part of ME Awareness Month. Admission to the talk, which is entitled “25 years of experience with ME: past reflections, present difficulties and future possibilities” is €5. All are welcome.
Dr Weir qualified in medicine in 1972 from the Universities of St Andrews and Dundee. After training in general internal medicine he specialised in infectious and tropical disease, working in Nigeria and Zimbabwe and also as a lecturer in tropical medicine at the London School of Hygiene and Tropical Medicine.
It was at this time that he began to encounter ME patients and his interest in the illness developed from there. He was appointed consultant in infectious and tropical disease at the Royal Free Hospital in London, where he spent 14 years before going to the Middle East. He treats patients privately in London and Belfast and has seen about 1,500 ME patients during his career.
“My first experience with a patient with ME was 25 years ago,” he recalls. “I was working at the Hospital for Tropical Diseases in London and had seen a succession of fit young men and women return from various tropical countries with malaria and other infectious diseases. Almost invariably we were able to make them better with the modern drugs that were available. Nonetheless there were exceptions. The occasional patient did not recover as expected.
“The acute symptoms of malaria were replaced by an overwhelming sense of fatigue, continuing malaise and sleep disturbance. Most particularly, whatever sleep they could achieve was unrefreshing. Sometimes the sleep pattern was fragmentary and interrupted, sometimes prolonged and unbroken, occasionally lasting more than 12 hours. Always the complaint was of ‘feeling worse on waking’. Cognitive difficulties were frequently volunteered and were a considerable handicap. Attempts to exercise and get fit again were invariably rewarded, sometimes after a delay of up to 24 hours, by an overwhelming feeling of malaise, often with severe muscle pains. In my career so far I had not seen anything like it .”
He says he soon realised this was an illness which could follow any acute infectious disease, not just malaria.
“I became increasingly interested not least because of the extraordinary contention it caused among my colleagues. It seemed obvious to me that the symptoms being complained of were entirely genuine, particularly as many of the afflicted had previously been very fit and were desperate to feel well again.
“My view always has been that there is something organically wrong, probably in respect of immune function. Recent work has demonstrated that the immune system of ME patients seems to be abnormally and inappropriately activated, as if dealing with an infection. But frustratingly no such infection has been consistently demonstrated. The relative absence of such evidence allows the alternative, psychological model of the illness to be promoted in a way which seems to repeat itself in a familiar historical sequence.
“For example, both thyrotoxicosis [a condition in which the thyroid gland produces excess thyroid hormone (thyroxine ) which results in effects on the whole body] and diabetes were once attributed to psychosocial causes until medical science demonstrated the genuine organic basis of these two conditions. Likewise, the characteristic tremor of Parkinson’s disease was given a number of bizarre psychosocial attributions until the biochemical basis of the condition was properly defined.”
Dr Weir believes experts are close to finding the cause of ME. “To coin a phrase, the future looks bright. This is because I am sure that discovery of the underlying cause of ME is not too far off. Already the genetic basis of the immunological dysfunction seen in ME is beginning to be understood. The role of (XMRV ) Xenotropic murine leukemia virus-related virus [a retroviral infection which was recently discovered in humans and evidence of which was found in 67 per cent of a sample of 101 ME/CFS patients] has yet to be properly defined. I look forward to seeing further data concerning the potential role of this virus. Studies are ongoing to find out whether there is evidence of XMRV in other groups of ME/CFS patients. There are also other potential infectious agents which could fulfil this role. With proper elucidation of its cause(s ) the magic bullet for ME may become a reality sooner rather than later. Time will tell.”
Orla Ni Chomhrai, co-ordinator of the Galway ME/CFS Support Group, says it is delighted to have such an eminent expert in the field coming to Galway.
“Dr Weir has had many years experience in this area having seen over a 1,000 patients with the condition. With this meeting, we will have a chance to hear him talk about his views of the illness and will have an opportunity to ask him questions, and so gain the benefit of his knowledge.”
Patients often have problems getting a diagnosis and adequate or appropriate support due to misunderstandings and ignorance surrounding the condition, she says.
“Raising awareness helps educate the general public about the condition and the impact it can have on sufferers’ lives. It is also useful for people to find out that there are others out there experiencing similar problems and that there are patient support groups as it helps them feel less alone.”
About 12,000 people in Ireland are believed to suffer from ME, now often diagnosed under the name chronic fatigue syndrome. Symptoms include overwhelming flu-like exhaustion made worse by even minor exertion (physical or intellectual ), muscle and joint pains, sore throats, swollen glands, disturbed sleep, impaired concentration and memory, and headaches. A particular feature of the disease is that the condition waxes and wanes over time and symptoms can fluctuate a great deal from day to day, or even within a day.
The cause of the condition is still unknown but 80 per cent of sufferers report an infectious onset - which is why it is sometimes called post-viral fatigue syndrome.
During awareness month volunteers will sell blue ribbons with the proceeds going to ME research. For further information contact the Irish ME/Chronic Fatigue Syndrome Association, PO Box 3075, Freepost F4439, Dublin 2 or e-mail [email protected] or telephone (01 ) 2350965.