The chairperson of the Campaign for an Irish M.E Clinic has pleaded with the new Government to implement a strategy to deal with an illness which affects 12,000 Irish people. David Egan has contacted the Department of Health on numerous occasions, asking that a specialised clinic be built to help treat sufferers and research M.E (Mylagic Encephalomyelitis), but the response has always been the same: “They told me ‘the country’s bankrupt, we can’t afford it’. The attitude is they just don’t care, they’ve got other things to worry about.”
Characterised by an intense fatigue M.E is a chronic physical illness which can affect anyone, of any age, at any point in their life. It is notoriously difficult to diagnose, harder to treat, and almost impossible to cure. However, in some countries, there are parameters set in place, ways for GPs to recognise the symptoms and guidelines to follow having done so. In Ireland there is nothing. Our doctors are not educated about the illness and should you be unfortunate enough to contract M.E in this country you face the prospect of being told it doesn’t exist, of being put on an exercise programme, and of having your symptoms worsened instead of alleviated.
David believes this is an issue which needs to be tackled at grass-roots level. “Young doctors need to be educated about this illness. They need to be updated on the latest developments; the treatments and research, worldwide,” he says. Having spent the last ten years of his life researching M.E, working in tandem with the National Institutes of Health (NIH) in America, David is keen to explain the true nature of a condition which some psychiatrists still maintain is psychosomatic. “I can assure people that it’s not psychosomatic or psychological. It’s biological and that’s been proved by the NIH. It’s also life threatening.”
Gillian Markey of the Health Research Board (HRB) has responded by stating that they have had “just one application for funding in this area,”, and that it “was not successful in obtaining funding following peer review.” Explaining the criteria required of successful applicants Gillian said: “If the person had people active within the clinic who wanted to do research on the number of people in Ireland who had M.E, they would put a proposal in under one of our schemes and then it may be eligible for funding.” This remains a source of frustration for David who believes that with a clinic, the illness could be treated: “If we could get the proper testing in proper labs we could nail down what’s wrong with the majority of patients and start them on treatments. It’s possible to treat patients, to not neglect them and let them die.”
Marie Curran, who was diagnosed with M.E in 2012, echoes David’s sentiments, stressing the need for Irish GPs to understand more about an illness which is affecting more and more people in this country. She too has contacted our Government, sending countless emails to former Health Minister Leo Varadker: “I’ve written to him, umpteen times, just asking him to start at the grass-roots, to start with your medical schools, and teach them about the illness.” In return she received stock letters informing her that it’s “receiving his attention.” Marie (35) has recently been told her blood pressure is high, and that further complications will arise as a result of her illness.
With no clinic or specialists to turn to the majority of sufferers look to the Irish M.E Trust for guidance. Its secretary, Declan Carroll, believes that diagnosing and treating the illness shouldn’t be so difficult: “In a lot of cases unfortunately the diagnosis is made just by way of exclusion when the doctor can’t find anything. What needs to be done is they need to come up with a strict criteria, a tick chart, which we send out as part of our information pack.” But in order for this to happen Carroll contends that Ireland has to strike out on its own. “Our Department of Health follows what the UK government do. They purport the theory that it’s really an illness which has psychological origins. We don’t contend that that’s correct, so therefore there’s an opposing view on the origins of the illness itself.”