Journal of IiME Volume 9 Issue 1 added benefit of giving some people their lives back. The stigma attached to ME as mentioned in the report – which is actually, in our opinion, just ignorant prejudice created by corrupt organisations and individuals - would be swept away. $50 million per year is really not much. After 5 years it will probably have built so much momentum that it could carry on by itself through savings in welfare, through new discoveries and, yes, through private donations/funding. Invest in ME suggested a beginning by inviting NIH to be represented at our fifth Biomedical Research into ME Colloquium in London on 2728th May 2015 and look the major research initiatives underway or planned. We invited the NIH to be represented there in London – in order to join our international collaboration effort to resolve this illness in a way that brings hope to patients, brings responsible and proper science to the research area and brings a raising of awareness that will obliterate the monstrous distortions about ME/CFS which have poisoned all chance of making progress in the last generation. We received no response. IOM “Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Redefining an Illness” Invest in ME looked at the full report from the USA Institute of Medicine (IOM). There was no public consultation as happened in the P2P or UK NICE guidelines. The IOM concluded with what has been obvious to patients for a generation – but which has for too long been ignored by governments, research councils, health services and the media “It is clear from the evidence compiled by the committee that ME/CFS is a serious, May 2015 chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.” We summarise below our observations after reading through the full report that we feel are worth noting - ► IOM is a respected and influential institute This means that the good points from this report can be quoted elsewhere to aid convincing other healthcare authorities that ME needs to be treated seriously as a systemic disease. ► IOM performed an extensive literature review. This means that the good points from this report can be quoted elsewhere to aid convincing other ► The proposed new diagnostic criteria are clinical criteria for the US healthcare system and there was only one European (and no UK reviewers) involved - so it remains to be seen whether the UK and other European health care authorities will adopt this report ► The IOM criteria allow co-morbidities which seems sensible for clinical purposes as anyone can have more than one disease. ► Care should be taken to avoid misdiagnoses and this is why specialists are needed to oversee diagnosis ► Post-Exertional Malaise (PEM) is obligatory, not optional, for diagnosis and this is the one Invest in ME (Charity Nr. 1114035) www.investinme.org Page 26 of 57
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