Journal of IiME Volume 9 Issue 1 Better from America? An Analysis of P2P and IOM Reports on ME May 2015 Recently two American institutions have commented on ME – treatment, research and other issues. These reports not only affect US citizens – they can also affect and influence other countries in the way they diagnose and treat peopled with ME or CFS across the world. The significance of these reports is due to the large amount of time and resource invested in analysing diagnostic criteria, past and current research into ME, funding for ME research and other areas associated with the way this disease has been treated and perceived over the last generation. As such it was very interesting to compare the views of these bodies and those which Invest in ME have been advocating during the last nine years. The NIH Pathways to Prevention (P2P) Workshop Report: Advancing the Research on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome was formed to create a research agenda for ME. Invest in ME submitted a full response to the National Institute for Health after reading the full report. Invest in ME urged the NIH to make a bold move and substantially increase funding for biomedical research into ME. A summary of Invest in ME’s comments on the P2P report - Summary ► It proved useful for an outside group of experts to get an overview of ME/CFS research. But it is clearly not possible to do this successfully by just using a scoring method that works for a well-established disease that everyone agrees upon without any knowledge of the underlying history. ► It does not help that research into ME/CFS has had two opposite viewpoints and the P2P document consequently tried to facilitate both. This is a major mistake and is contrary to any common sense or logic. It repeats the calamitous mistakes of the MRC in the UK ► If the statement is made that ME/CFS is a physical disease then recommendations should follow logically from that statement. ► If there are co-morbidities they should be dealt with in the same way as one would do with co-morbidities in MS, cancer or Parkinson’s disease or any other disease. ► We commented that it was, at times, difficult to comprehend what the real objective of this workshop was and we hoped that this was not yet another paper exercise to keep Invest in ME (Charity Nr. 1114035) www.investinme.org Page 24 of 57
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