I've been talking to Declan from the Irish ME Trust (IMET) to find out more about ME in Ireland, here's a summary of what he told me.
- ME affects up to 12,000 people in Ireland. Of that number and in line with international figures, approximately 25% of those would be considered to be severely disabled, rendering them housebound and even bedbound.
- Our own Department of Health tends to follow the advice given by the UK Department of Health. Following the 2002 CMO report in the UK, our then Chief Medical Officer told an IMET delegation that they wouldn’t intend to reinvent the wheel, but would follow the course laid down by the UK.
- He also stated at the time “ I recognise that CFS/ME is a source of significant morbidity in the community and that, when so little is known about the cause of the illness, there is serious concern about how the illness is diagnosed and those who suffer from it are treated. I agree that health care professionals of all types need to have a far greater awareness of and capacity to identify the illness, diagnose it and manage the illness and those who suffer from it”.
- The route of having CFS centres which advocate CBT and graded exercise programs is not widespread here as in the UK and doctors will just refer to a hospital consultant dealing with the patient’s most prevailing symptom. In many cases, this particular consultant will not be able to offer much help.
- This year the IMET met with a senior minister within the department following a promise to actively pursue a consultancy post for people with ME. We would hope that this consultant, if he/she were to take up that post, would be well informed about ME and take its information, not only from the psychiatric schools, but also from the array of experts dealing in this field. An annual trip to the IiME (invest In ME) conference in London would be a good place to start.
- Patients at first need to be diagnosed properly and we would advocate the use of the Canadian Criteria for diagnosis. We would say that most people in Ireland diagnosed with ME or CFS are given that diagnosis based on fatigue and perhaps muscle pain, when routine blood analysis is shown to be clear. In fact, when muscle pain is the predominant symptom, a person would routinely be referred to a Rheumatologist, at which point a diagnosis of fibromyalgia would be given. Our doctors seem to think that fatigue = ME/CFS and pain = fibromyalgia. Obviously a lot of informed education is needed.
- I think our own government, like a lot of others throughout Europe, need to carefully analyse the cost to the state in terms of wasted referrals in the absence of a clear diagnosis. Also, this void leads to the situation whereby private therapists can sometimes parade themselves as being ME experts and in a lot of cases, cost the patient expenses which should be more properly spent through the orthodox medical route, IF there was someone to see.
ME support groups and events have brought sufferers together in Dublin, Galway, Wexford, Cork and Limerick. I already know that I'll be well supported in Dublin when I arrive for the marathon there. I'm due to be meeting with Michael O'Reilly (Chairman of IMET) and his wife Carmel on the afternoon before the race where I hope to find out more about the situation in Ireland. Hopefully we can get some good press coverage for ME and some funds for research.