Journal of IiME Volume 8 Issue 1 Research Foundation the lack of action by the Medical Research Council was highlighted – “We have all been frustrated over the years by the attitude of the MRC to CFS/ME. They have assured us that they felt this was an important area of research, but grant applications were turned down. Dr (Jonathan) Kerr and the Foundation submitted three applications all of which went to the Neuroscience and Mental Health Board. These applications were dealing with neither neuroscience nor mental health. In spite of protests from the Foundation the MRC refused to remove our grant applications to a more appropriate board.” Indeed, the same newsletter spoke of Professor Holgate being chair of a forthcoming MRC panel for ME. That was 2008! In fact the newsletter went on to state – ’..it is anticipated by the end of 2008 that the MRC will have an agenda …’ In fact the response by the MRC lasted another five years and many years on from that article the sea of ignorance had been allowed to build into a tsunami. Now, belatedly and due to the example and the efforts and results of IiME supporters who are finding/funding a proper base of research, the MRC has actually been forced into at least appearing to act. Yet even their latest initiative, which proposes to join all researchers and organisations, no matter what their beliefs about ME or their interests, cannot agree on the basics – with no view or agreement on the correct way to diagnose ME nor even on the prevalence figure - with more than one MRC representative stating in the past year that the number of people suffering from ME was over 600,000, a magical and dramatic increase of 300% over previously assumed figures). If this really were the case then there certainly is an epidemic of ME which would warrant government intervention immediately. But this indicates the futility underlying this manoeuvring. And so the farcical continues. It is a strange policy to manipulate statistics in this way at a time when social media is liberating patients by allowing easier communication, more information, better education and the means to challenge the establishment PR organisations such as the Science Media Centre with robust and correct critiques of flawed science. Funding of research into ME is the key issue and it is a wonder to patients how key funding agencies can get it so wrong. May 2014 In reality it seems that there is no shortage of funds available for studies which fit government policy. And this shames those who issue statements talking of funding being available for high-quality studies or of ignorance about ME. It would indeed be a sad indictment of the society that we ourselves are paying for if what matters is who one knows rather than what one does when it comes to research funding granted for ME. So what of the real research required - the right stuff? As mentioned in our article which was published at the beginning of April research into ME needs a strategic approach - but it may be destined to fail completely by attempting to establish the way forward on foundations which include so much of what has been wrong in the past. ..a strange policy to manipulate statistics in this way at a time when social media is liberating patients by allowing easier communication, more information, better education and the means to challenge the establishment PR organisations such as the Science Media Centre with robust and correct critiques of flawed science. We have written in the past that we feel it is impossible to marry the views of those who believe in the deconditioning or behavioural/wrong illness belief model of ME with those from the biomedical side. The failed and flawed PACE Trial, for all the spin and waste of scarce funding, did prove one point emphatically - that the behavioural view of ME cannot deliver and should not continue to command more funding. There is another, better way forward for ME research - a clear case to be made for segregating the biomedical from the psychosocial. This could then force a separation of fatigue research from ME research. A strategy of biomedical research into ME with a research group being formed consisting of biomedical researchers, using resources and facilities across continents - hooked up to share research and data and crowd fund new research. Future research into ME must be based on collaboration - but not collaboration at any cost. It would seem quite meaningless to base the strategy on those failed policies and directions of the past - Invest in ME (Charity Nr. 1114035) www.investinme.org Page 6 of 52
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