Journal of IiME Volume 9 Issue 1 ► In the absence of anything else one must take what one can and build upon it. And there are many good points in the report. ► If the intent to improve the situation for people with ME and their families is honest then elements from this and the P2P report can change the way healthcare professionals treat the disease. ► The good points from this report ought to force and demand a radical rethink of Health Institutes’ and Research Councils’ policies – something long overdue. ► To exact a greater morality amongst research funders might be one benefit from this. Name ► Unfortunately, however many good points there may be in this report the name will be something which many will interpret and then relate to their perception of the disease. ► We believe the suggested name is ill thought-out and needs to be rethought. ► Whilst it is obviously logical and correct to remove the term CFS and Chronic Fatigue we feel it is not a sensible strategy to change the name to the suggested SEID at this point. ► Even if the intent was honourable the name will still influence how this disease is treated. ► Just as with food the contents in the tin may be completely ignored due to poor labelling. ► By deciding to tinker with the name of this disease one is also obliged to examine the history and politics behind it and understand why such a name change could offend, discriminate, confound, disappoint or just enrage some patients. ► Playing with the name and using exertion – however the correctness in medicine may be different from lay perception – will still invoke an initial response of this is being a fatigue illness rather than a systemic disease. May 2015 ► So we suggest retaining Myalgic Encephalomyelitis (ME) until enough current data is found to support or otherwise. ME (itis) is already in the WHO, it does not stop research, it removes the rather useless CFS denigration and still allows a correct view to be presented. Criteria ► Whilst it may be good that a set of simplified criteria are produced there is the concern that the criteria listed by the IOM report may be too broad. The criteria also need to be validated first to see if they really capture the right kind of patients. At the Invest in ME conferences there have been calls for the need for simple diagnostic criteria. ► However, the committee also added a table with many more symptoms which could be used to support the diagnosis. ► It will require education of doctors to make them able to identify the disease and avoid incorporating misdiagnoses into the assessment. The multiple comments within the IOM report relating to lack of belief from healthcare staff are evidence that this education is important. Distribution ► An obvious point – but one which needs reaffirming for any diagnostic criteria used - ► “The criteria proposed here will not improve the diagnosis and care of patients unless health care providers use them” ► Apart from the name the distribution of the other sensible points from the IOM report needs to be managed, monitored and followed-up in order that uptake of ME being a real systemic disease in ensured. ► In the UK the CMO report of 2002 [10] produced seven recommendations. It would be a disaster if the IOM report ended up like the CMO report in the UK where none of the Invest in ME (Charity Nr. 1114035) www.investinme.org Page 30 of 57

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