Journal of IiME Volume 2 Issue 1 www.investinme.org From the Chairman of Invest in ME (continued) This continues a chain of refusals by the department to try to understand the major issues facing the families of people with ME/CFS by the lack of a government policy for ME/CFS. Yet it is a pity that the UK government continues in failing in its duty of healthcare to its citizens by ignoring the overwhelming evidence which dictates that substantial funding of biomedical research into ME/CFS will likely give results – something recommended in the Gibson Inquiry by establishing a world-leading research community to provide the necessary science for creating treatments and cure for ME/CFS. The conference would have helped the ministers to see for themselves the need for this. Unfortunately, the Health minister has stated that the Gibson Inquiry has been ignored – replaced by the National Institute of Clinical Excellence (NICE) guidelines which have been heavily criticised by IiME and other support groups as lacking in proper objective analysis and offering nothing for people with ME and their families. Our theme for the conference is Sub Grouping of and Treatments for ME/CFS and we believe now is the time to lobby for a more scientific approach by the governments and healthcare organisations toward treatment of people with ME/CFS. one size fits all methodology based on CBT and GET - is shown not only to be costly or dangerous but also unnecessary and pointless for people with ME/CFS. Any unbiased and objective assessment of biomedical research data which has been shown in our past conferences would surely agree that dedicated funding of biomedical research into ME/CFS, made within a national strategy for ME/CFS, would be the most cost-effective, moral and sensible approach to take in order to allow hundreds of thousands of patients, carers and families to reclaim their lives and reduce what is an enormous cost to the UK economy. The need for sub grouping of ME/CFS is becoming more and more accepted and is supported by the increasing biomedical research. The experience and data of researchers such as Dr. Jason, Dr Lerner, Dr Chia, Dr Mikovits, Dr Newton and Dr Kerr, backed by real life experiences of Dr Spurr and Dr Monro shows that there is hope for treating and eventually curing this illness. It is an illness that has no international barriers. The unrealistic and unjust approach shown by NICE with their recent guidelines for ME/CFS – a Yet there may be signs of change - undoubtedly caused by the many dedicated researchers and campaigners who have been continually providing information and advocacy over the many years. Attitudes to ME/CFS are changing. Good quality science is being published in peerreviewed journals (albeit mostly privately funded research). The argument that funding of biomedical research into ME/CFS is denied because of the lack of good quality research proposals is now proven beyond doubt to be specious. News of recent changes in Scotland has brought hope that the UK government might change its position of indifference. Invest in ME pointed out over a year ago that the best hope for change in policy toward ME/CFS may come from smaller countries. We highlighted the work going on in Norway where the Norwegian minister, prompted by the tremendous work of the Norwegian ME Association, has begun changing course. In Scotland recently new hope comes of the way ahead for the work to develop an ME good practice guide for GPs, known colloquially as the Invest in ME (Charity Nr 1114035) Page 4
5 Publizr Home