UTV

	UTV LIFE	4 days ago
	Hi All As you are probably aware I agreed to be interviewed by UTV life to further promote awareness of ME and the lack or should I say nil services in Northern Ireland available to my son David to help him combat this illness. It aired tonight 9/4/08 at 5.30pm. I am extremely annoyed about comments made by the Department of Health which stated that they do not fund ME. This is an insult to me as a mum and carer of my 15 year old child who has just entered his 4th year of living with this dreadful illness, to my family and to the 6,999 other people living with ME in Northern Ireland. This shows how little people with ME are thought of and how ignorant the medical profession as a whole are. I would like to clarify who exactly Dr Derek Enlander is as the Chair of the NIMEA seemed to not know. Dr Derek Enlander who is due to see David in May, was himself born in Belfast, Northern Ireland. Dr. Enlander is Physician-in-Waiting to the British Royal Family and to several members of the British government during their visits to New York. He is an ME specialist. Unlike the doctors here in Belfast who have little or no experience of this condition, so how can they hope to treat it. He is pursuing a cure for this illness at the Mount Sinai Hospital in New York, as our Dr. Jonathan Kerr (ex Belfast) at St. George’s Hospital in London, and by Dr. Vance Spence (ex Strabane) at Dundee University. With regards to comments made tonight by Ken Hull, Chair of the NIMEA, these are not in keeping with my own personal views. I am not a part of this organisation and in fact had resigned my membership from the NIMEA some time ago, after comments made tonight I am very glad of this. I believe that the Chair of the NIMEA did a great disservice to the thousands of people living in NI with this illness in their promotion of CBT and GET. The existing evidence from surveys of over 3,000 patients suggests that such regimes are of limited value and at worst are harmful, leading to increased illness and disablement. His continued support/promotion of the CFS clinic in its present form and in its current location in a psychiatric unit in the Belfast City Hospital is an outrage and I know that many of their members feel the same. He would have been better spent sticking to his original press statement which stated the NIMEA’s three priorities for ME patients in Northern Ireland i.e. 1. The provision of basic NHS services, east and west of the Bann. 2. Specialist support for the severely ill housebound. 3. Research funding to find a cure. None of which Ken Hull deemed fit to mention on air in tonight’s show. I am extremely angry on behalf of my child that they would use him in such a way to promote therapies which will not help to cure my child of his illness and whose efficacy is being disputed by the many ME charity’s in the UK. Shame on you Ken. I do understand that he was given limited time to speak but he could have and should have done much better than this for the thousands of sufferers in Northern Ireland. With regards to the NICE guidelines that Ken Hull also mentioned. NICE do not recommend CBT and GET for people with severe ME, which David has. They do state however state that CFS/ME services should be provided by a multidisciplinary team i.e. neurologist, immunologist, infectious disease specialists, dieticians, occupational therapist, physiotherapist, nurses etc. Only 1 of these is in evidence at the CFS Clinic in Belfast, which Ken Hull, Chair of the NIMEA so eloquently promoted. My priorities with regards to ME: Help my son live day to day and relieve the pain and suffering he is enduring even as you read this. Raise awareness of the neurological disorder ME Raise money for Biomedical Research into ME (because the government won’t give any) Write to Mr McGimpsey and ask for a face to face meeting to express my disgust at the level of care provided to ME patients in Northern Ireland and the Department of Health’s continued apathy towards them. I would like to take this time to thank UTV life for allowing my family a vehicle to raise awareness of this illness. I did not take the decision to allow David to be filmed lightly. I hope that many people out there will contact the programme and express their anger and despair about the lack of services in NI for people such as my son David and if possible write to Mr McGimspsey re the same. My only hope is for David to get well, he cannot do this alone, please support him and our family in our continued struggle to free David from this prison that he finds himself in – support biomedical research into ME. Antoinette Christie