Journal of IiME Volume 2 Issue 2 www.investinme.org for medical research into ME/CFS continually allow flawed research which purposely ignores the severely affected in their selection criteria. Our own support work with severely affected people with ME in the last 9 months proves that a section of patients receive no attention from the healthcare system – and this is in London. Our International ME/CFS Conference in May will try to focus more on those severely and moderately affected patients in the hope of attracting attention to the need for research into severe ME. In the Journal Greg Crowhurst has provided a nursing model for severe ME and Sue Pearkes has contributed an article to increase understanding of the issues faced by wheelchair users – a very interesting and different perspective which ought to be read by those who are responsible for providing management strategies for people with ME. The lack of proper attention given to severely affected people with ME is highlighted by our new book project – Lost Voices - a book developed over the last year and using the power of pictures to supplement the moving stories of people with ME who have been left on the medical scrapheap. Lost Voices encapsulates the tragedy of this illness and the way in which people with ME are left to deal with this illness by themselves with no hope of a future. We welcome in this Journal articles from distinguished experts on ME/CFS who have presented at our international ME/CFS conferences. Dr Leonard Jason has kindly submitted a paper examining differences between blood and non-blood relatives in five illnesses, including ME/CFS. The findings show genetic and environmental factors are associated with ME/CFS. Research into diagnosing and treating ME/CFS needs to ensure that proper sub groups are being used. In his Letter from America Dr Martin Lerner addresses concerns among ME/CFS physicians endeavouring to help patients. Invest in ME (Charity Nr. 1114035) Dr Bruce Carruthers has provided a very thought provoking and thorough insight into the way researchers and clinicians should work. And so to NICE. If anyone had any doubts about the inappropriateness of the NICE Guidelines for ME/CFS then we have articles in the Journal which simply show why NICE have again failed the people they are meant to serve and why their guidelines are plainly unfit. We have translated an article from the Norwegian ME Association which clearly shows the failings in the NICE guidelines. It is a sad fact that some European healthcare services are under the impression that adoption of the UK NICE Guidelines for ME/CFS would be a sensible approach and could save money. This impression is false and will lead to neither appropriate nor economical services being supplied. NICE ignored the data which existed regarding ME/CFS in favour of a one-size fits all package of rehashed psychiatric paradigms – the same paradigms which have been promoted by the government, MRC and psychiatrists for years and which have not only done damage to people with ME but also completely failed in their supposed intent. Patients bringing legal actions - familiar territory for NICE - an indication of an organisation which is out of step with patients’ needs. NICE needs to ensure it stays current in its knowledge regarding ME, just as front-line doctors and other healthcare staff need the same currency to perform adequately any work related to people with ME. Hopefully the Journal of IiME will help in some small way to keep this currency in tact. We hope the New Year will begin with the NICE guidelines for ME being consigned to the shredder – a fate, unfortunately, which they thoroughly deserve. Invest in ME look forward to the New Year where we have a new book, a new European organisation campaigning for people with ME and a new international ME/CFS conference. All at IiME wish our readers a Happy Christmas and a cure for the New Year. Page 3/74
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