Journal of IiME Volume 8 Issue 1 May 2014 Thanks to the great proactivity of Professor Jonathan Edwards and Dr Jo Cambridge we have been able to develop the means to initiate the clinical trial and the initial B-cell preliminary study has now passed internal UCL checks and has gained ethical approval. IiME have now signed the contract with UCL. In addition we have been discussing with Dr Amolak Bansal a new study surrounding the hypothalamus. The charity is also planning on funding medical students to participate in research. In our ninth year as a charity we can say each year has been a stepping stone in breaking the mould and bringing ME into mainstream in research and media. Funding is scarce and the efforts of our supporters to make up what has been lacking from government agencies and research funding organisations have been awe-inspiring. Patients have worked tirelessly and imaginatively to raise funds for the research proposed by IiME and this has created a force for change. Currently Invest in ME and our supporters are actually initiating, organising and funding possibly the two most important ME research studies currently in the UK - the gut microbiome project at UEA and the IiME/UCL rituximab clinical trial. With the power of social media the charity and our supporters have been able to crowd source funding for these projects. Translational biomedical research - an iterative feedback of information between the basic and clinical research domains in order to accelerate knowledge translation from the lab to the bedside and back to the lab again - needs to be implemented to translate the findings of basic research more quickly and efficiently into medical practice. This will produce more meaningful health outcomes and facilitate the sharing of repositories and research-based facilities and laboratories. This is the model IiME are attempting to promote in the proposal for an examination and research facility. The change in the dynamics of research – certainly in the UK – has been affected by patients, those who have viewed with dismay the continued apathy to proper research which has been shown by establishment organisations. The success of the IiME/Let’s Do It For ME crowd sourcing campaigns has meant that patients can effectively enable the research that is required to be considered rather than research that unrepresentative establishment organisations decide they want. It is this that has forced progress. Progress is a fine word but change is its motivator – and people with ME and this charity have made that happen. Supporters have set up many Just Giving pages listing many imaginative ways of raising funds ranging from walking, running, cycling, swimming etc to dog sitting, crocheting, and cutting of hair A supporter’s song was put on iTunes. YouTube has been used for awareness videos. The Big Sleep has had an amazing range of ideas and events based around one theme. The ZZZ Factor Comedy Club used to humour to raise awareness. The 92 for ME football club tour was especially effective in getting publicity and reaching an entirely new audience and an article from the team’s leader, Mike Harley, appears in this Journal. There are close to 100 Just Giving pages set up to support Invest in ME in contrast just to a handful when we signed up to it with the help of a supporter paying the first year’s fee. The charity took part in Direct Debit competition again this year and won the first £2000 price – all of which has gone to funding biomedical research. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 4 of 52

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