Journal of IiME Volume 1 Issue 1 The Gibson Inquiry "This group believes that the MRC should be more open-minded in their evaluation of proposals for biomedical research into CFS/ME and that, in order to overcome the perception of bias in their decisions, they should assign at least an equivalent amount of funding (£11 million) to biomedical research as they have done to psychosocial research. It can no longer be left in a state of flux and these patients or potential patients should expect a resolution of the problems which only an intense research programme can help resolve. It is an illness whose time has certainly come.” Thus concluded the report from Dr Ian Gibson (MP)’s Group on Scientific Research in to Myalgic Encephalomyelitis (ME) – otherwise known as the Gibson Inquiry. Unfortunately, that time is too late for some of the victims who have lost their lives to this devastating illness. Invest in ME welcomed the broad message of this report when it was published in November 2006. The Inquiry called for ME to be given due recognition, alongside heart disease and cancer. It also called for ring-fenced money for bio-medical research as happened with AIDS. ME in fact affects five times as many people as does AIDS in the UK but can have a much more devastating impact on quality of life. The Inquiry recommended that research must be made a priority and suggested that £11 million should be made available for research to redress the balance in an illness where too much emphasis had been put on psychological “coping strategies”. The Inquiry accused the MRC of merely “paying lip-service” to the call for bio-medical research. Invest in ME felt that at last an official acknowledgment was given that ME is a severe, incapacitating, illness and that those who suffer from it, as well as their carers and families, may have their lives completely ruined. Invest in ME have been asking for a long time for very simple, common-sense things such as the adoption of comprehensive diagnostic criteria and epidemiological studies. We were delighted that the report agreed that this was vitally important. This report did not stint in its criticism of the Medical Research Council and NICE. NICE should rethink Indeed, it warns that very carefully one of its recommended treatments, Graded Exercise Therapy (GET), because of evidence that in 80% of M./E. sufferers there was diastolic cardiomyopathy. Invest in ME has warned NICE during our review of the Draft NICE Guidelines for ME that by recommending GET they would put patients lives at risk, and risk Judicial Invest in ME Charity Nr 1114035 Review. We still hope that NICE will take notice. Invest in ME also welcomed the call for an independent scientific committee to be established to oversee all aspects of research, as well as an inquiry into the vested interests of insurance companies whose advisors also act as advisors to the DWP. Dr Gibson’s Group recommended an investigation of these vested interests by a standards committee because, it stated, too often patients have to live with the double burden of fighting for both their health and their benefits. Invest in ME believe that we must use the positive aspects of the inquiry report and move forward and ensure that people are correctly diagnosed with this illness and that doctors and scientists treat patients knowing and accepting that they have a genuine and serious illness. Invest in ME have called on the government and MRC take this opportunity and work with the ME community and biomedical researchers to ensure that this illness can be understood, that proper biomedical research is funded and that archaic and unjust perceptions by government departments, sections of the health service and those responsible for deciding funding strategy are once and for all discarded. Dr. Gibson has created an opportunity to benefit patients and find a cure for this illness. Invest in ME ask the government to ensure that Full 41 this opportunity is not lost and that yet another generation of UK citizens is not abandoned. report available at - http://tinyurl.com/ynqhtc IiME’s reactions to the report are at - http://tinyurl.com/2aqnye ME Story We arrived at the doctors and the female doctor refused to see me, saying I was not her patient, and she wasn't prepared to see me. I was just in a state of shock and my partner was furious. The Doctor in question didn't come out to the waiting room to see me, instead wrote a prescription for three months of anti-depressants - Jan www.investinme.org
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