following the decimation of the flawed PACE Trial and glimpses of realisation by the establishment that things must change. IiMER were arguably the first to develop the idea of a Centre of Excellence for ME in UK – started almost a decade ago – a while after the Gibson inquiry and after that charity had sat in interminable meetings with the NHS for years and which had achiev by the time we walked out in disgust. senseless meetings are still going on wi sign of any progress. The Gibson Inquiry recommended an investigation of those vested interests in ME that have so manipulated the research and treatment services. Dr Gibson suggested a standards committee because too often patients had to live with the double burden of fighting for both their health and their benefits. This has not occurred. Instead, it has been left to an independent journalist from outside the UK to expose the flawed PACE Trial and all of its underlying intrigue. Yet, compared to even five years ago there are changes which have occurred. Thanks to leading organisations, such as Invest in ME Research, a great deal of international collaboration has been initiated, some more funding has been found (though still mostly from philanthropic and charitable sources). The recent NIH award is encouraging but far less than Invest in ME Research suggested in our response to IOM and P2P Reports ($250 million dollars for the next five years). However, our cover image shows the reality of the state of research into ME today – lots of pieces to a puzzle, without anyone really knowing what the bigger picture will look like, even though there are hints. The landscape for ME still seems like a jigsaw puzzle with an historical lack of funding meaning that relatively few players have been able to start to create the big picture. In research it is common for false starts to occur when attempting to find the cause(s) and treatment(s) for a disease. The fact that ME has had far fewer false starts, let alone breakthroughs, than other areas of research is also an indication of the pitiful attention that has been given to it by successive governments and health departments and by disingenuous establishment representatives. Biomedical research into ME has not been well served in UK or elsewhere for a generation. Patients are (literally) sick of the biopsychosocial approach to ME and fatigued by the constant false belief that exercise will make them better. r lack of funding have been political n part, and more to do with reasons ated from researching this disease. s has had consequences in scaring off new research interest, in avoiding ME being brought into mainstream biomedical research and lacking any sort of strategy. gress from seed funding research ccasional philanthropic means has ed. is has done is to create more puzzle pieces and nothing has been joined together. So many disparate pieces of research – uncoordinated, using precious funds raised mainly by patients and poor use of the comparatively small research capacity available. Until very recently nobody has been looking at the whole puzzle, with genomics technologies now assisting. This is why Invest in ME Research has been developing a strategy since 2010 to develop the UK/European Centre of Excellence for ME – where a hub of research, based in Norwich Research Park, can be created to build up the bigger picture and then add research onto to it as knowledge develops. To create hypotheses to establish how things may link up. Already, in recent discussions on research, we can see that our Centre approach is functioning and addressing other missing aspects of the big picture that have been allowed to be ignored – such as overall standards and outcome measures which can be used by all. The basics are still lacking and there is an urgent need to raise the standards. This is why Invest in ME Research has spent so much effort in facilitating international collaboration between trustworthy biomedical researchers who wish to work together – such as the European ME Research Group (EMERG) concept. This is why common data elements is required and why the recent NIH work on that may be crucial to move forward. Page 10 of 56 www.investinme.org Invest in ME research (Charity Nr. 1153730)
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