Journal of IiMER Volume 13 Issue 1 Invest in ME Research FOURTEEN YEARS Invest in ME Research is an independent UK charity facilitating and funding a strategy of highquality biomedical research into Myalgic Encephalomyelitis (ME or ME/CFS) and promoting better education about ME. The charity is run by volunteers - patients or parents of children with ME - no salaries, no government funding, but wonderful supporters. This is the fourteenth annual international ME conference that this small UK charity has organised - a fact which surprises us on many levels. It is a surprise that we have managed to continue to arrange these conferences, and even increased their scope - despite comparatively few resources. A surprise that there really has not been the progress in research that we believed would and should have come after all these years. A surprise that it has taken so long before any major national agency has taken this disease seriously. A surprise that many other national research councils, especially in UK, are lagging so far behind and have ignored this disease for so long. Yet where would we be now had it not been for the dedication and efforts of our supporters throughout these years who have made it possible for us to redirect research toward biomedical and influence and force a new direction for ME? These are not just mere words for us - not a fresh update to leaflets, not a soundbite to pacify ME patients in order to retain support, not a new tactic to attempt to maintain the status quo, not another strategy to do deals behind closed doors and maintain establishment influence on progress. During all these years the charity has consistently and unambiguously campaigned for dedicated biomedical research into ME and the necessary funding to achieve it. We believed progress would be more rapid and it is sad that the opportunities that we presented and the offers that we made to engage were not taken up by establishment organisations as so much more Invest in ME Research (Charity Nr. 1153730) might have been achieved in tackling this disease at that early stage, rather than waste lives by doing so little. Yet without the efforts of our supporters throughout these years the scene could have been quite different and far worse. We named the Colloquiums the “Biomedical Research into ME Colloquiums” as we wanted to make the point that we would not compromise. Biomedical research was the way forward to make progress. The conferences were designed for professionals in order to increase the education of healthcare staff and influence the future treatment of people with ME. However, we have always ensured that the conferences were also open to patients and carers, believing that having patients, carers, researchers, doctors, nurses and even the media interacting with each other was a good thing. The charity has facilitated the foundation for a sustainable strategy of biomedical research into this disease. Our plans for a Centre of Excellence for ME have captured the imagination and is clearly seen as the way ahead - and good progress on this has been made, although with more resources the charity could expedite this for the benefit of all patients. The Centre of Excellence for ME project began in 2010 and the charity was able to fund the first PhD studentship some years later. This approach to research offers the best way forward for ensuring biomedical research into ME can be maintained and treatments developed. Collaboration has been at the heart of the charity's innovation following a review after the 2007 conference and our strategy of bringing the best researchers from around the world together was formed. The acceptance of this vision and collaborative strategy has matured to the point where now the NIH is taking a lead in forming centres and collaborative strategies. Collaboration and working together have been themes for our Colloquiums - with real international cooperation forming which can only lead to a better future for patients than would otherwise be the case. To support this strategy the charity has investinme.org Page 4 of 52
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