Journal of IiME Volume 9 Issue 1 The onus is on the IOM and NIH to honour those good points from these reports – and to translate these into action. Clearly a dramatic and immediate increase in funding for biomedical research needs to be made. IiME suggested $250 million dollars over the next five years. This will be a long haul. Those in NIH and CDC – as well as those in UK MRC - and the respective government health ministers who have been responsible for ME research and funding and guidelines over the last generation have been incompetent, or worse. So lessons have to be learned from these past failures to ensure the same fatal mistakes are not made again. We ended our P2P report evaluation thus - Words are fine and Progress is a fine word – but change is its motivator – and it is action that delivers change. To make progress we need not mere words and a slow, undeliberate action plan. To make progress with this illness we need to make a bold changes. The task now is to implement the good points of this new acceptance of ME as being the real disease that patients already know it is. And we stated to the NIH the following - This is urgent, lives are dependent on it – Treat it as being urgent! Invest in ME is a small charity with a BIG cause. If such a small charity and its supporters can organise ten international conferences with delegates from 20 countries, if it can organise 5 biomedical research colloquiums attracting participants from top research organisations in a dozen countries, if it can initiate possibly the two most important research projects for ME in the UK then the NIH should be able to do far, far better – and in a far shorter period of time. May 2015 The reports vindicated all that Invest in ME has been trying to achieve these last nine years. And, after reading and commenting on these recent reports, we are frustrated that we do not have the means to correct much of what has been wrong over the last generation. With more support and the means to change things we can make more rapid progress and overcome these establishment obstacles. Recently the charity has initiated and funded important new research projects in the UK for ME [III]. After some success we only wish it were possible for the MRC in the UK to provide some of their squandered funding instead to IiME. To paraphrase Winston Churchill – Give Us The Money And We Will Finish The Job. In the meantime we will progress the research foundation we have begun as quickly as possible because, as our advisor Dr Ian Gibson stated – “Things do not have to be the way they are – we can change things.” Links I Invest in ME Response to NIH Pathways to Prevention Workshop: Advancing the Research on Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome Draft Executive Summary http://www.investinme.org/IIME-Newslet-150101.htm II Invest in ME Response to Institute of Medicine “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness” http://www.investinme.org/IIME-Newslet-150302.htm III Invest in ME research http://www.investinme.org/research Invest in ME (Charity Nr. 1114035) www.investinme.org Page 32 of 57

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