Journal of IiME Volume 3 Issue 1 www.investinme.org Conference Edition Editorial Comment Welcome to the 2009 conference edition of the Journal of IiME – a blend of science, facts, stories and news regarding Myalgic encephalomyelitis (ME or ME/CFS). May is ME Awareness Month and also the month when Invest in ME hosts its annual biomedical research conference. It is an apt time to look back at what has occurred in the last year as well as to look forward to future developments. In the year which has elapsed since our 2008 conference some events have occurred which will have consequences for people with ME and their families, for researchers and health services when it concerns ME. These events are a mixture of regret, disappointment, anger but also progress and hope. The last year has seen the NICE guidelines for ME being promoted and, some would argue, forced upon the health services and unwilling patients. The dissatisfaction with the NICE guidelines has seen a patient revolt and NICE, yet again, being taken before a Judicial Review to defend its processes and its decisions by the very patients it was meant to protect and to treat. A major criticism of NICE is that it failed to look at the established, published biomedical research and instead produced a document which is neither helpful for patients nor useable by medical professionals. Its scope, based on flawed input, was also far too narrow to make any meaningful difference. One of the most disappointing aspects of the Judicial Review was the spectacle of NICE Disclaimer The views expressed in this Journal by contributors and others do not necessarily represent those of Invest in ME. No medical recommendations are given or implied. Patients with any illness are recommended to consult their personal physician at all times. attempting to paint these guidelines as a “gold standard”. This risible self-assessment by NICE showed a flawed organisation which needs overhauling. Another organisation failing people with ME has been the Medical Research Council. The last eighteen months has witnessed the UK Medical Research Council officially acknowledge that its previous policy toward ME research has been an abject failure by setting up a new panel to look at research into ME. There is doubt of the genuineness of the MRC to seriously change its approach. The criticism which IiME has of this panel is that it includes some who wish to reclassify, or who perceive ME as a behavioural illness and this undermines the reason for this panel’s existence and its continued operation. With its usual tardiness the MRC has spent eighteen months since the panel’s inception and has yet to produce anything of substance. We would suggest to the MRC that the patient community might have far greater involvement in this panel than it currently allows. We also believe that the eventual decision-making process of subsequent research proposals by that panel and any peer reviewers must be completely transparent – something the MRC continues to fail to do and which has seen obvious bias in funding of research into ME in the past. The need to sub group ME patients to allow proper research and treatments was Invest in ME (Charity Nr. 1114035) Page 5/76
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