Journal of IiME Volume 9 Issue 1 The isolation for children affected by this disease in school years is a major factor which society needs to address and for which schools need to be criticised due to their lack of knowledge of the disease and their apathy in keeping children linked in some way to their school class. ► The report recognises the negative impact on employment and education ► The report stated that the term CFS is not appropriate. This aligns with the P2P report The committee determined that the name “chronic fatigue syndrome” has done a disservice to many patients. ► The report rejected the long established name myalgic encephalomyelitis (ME) stating there not being enough evidence to justify the correctness of the name and that the name “myalgic encephalomyelitis” does not accurately describe the major features of the disease. This is something Invest in ME disagrees with. Even if one believed the above IOM statement to be correct, it seems to ignore the fact that there are other diseases with incorrect names such as malaria and hay fever and they have not been changed. The UK MRC states that there is now evidence of neuroinflammation in some severe cases of ME. This is no different from, for example, poliomyelitis where the mild cases may appear unremarkable and go even unnoticed. ► In place of ME the committee proposes SEID “systemic exertion intolerance disease” as a name that more fully captures the full scope of this disorder. We feel this is not a progressive decision and provides a name not so dissimilar from the ineffectual and inappropriate CFS ► Both the P2P report and the IOM report fail to move away from the association of ME May 2015 with fatigue as the main symptom. That ought to have been addressed. They should have recommended dropping CFS and used ME until more is known as ME is well established in the name and even US researchers and clinicians have started to use ME instead of CFS in recent years. ► SEID is a clumsy acronym albeit better than CFS. The use of a potentially misunderstood fatigue-associated word means that this will be bound to retain the implication of ME/CFS being a fatigue illness ► Systemic and Disease are easy to accept but Exertion Intolerance will not be well understood by the general public and will be confused with exercise (physical) intolerance only. ► It was not totally clear if the recommendation for a name change was to replace CFS or ME or both. ► The criteria are more specific than the CDC Fukuda but wider than CCC or ICC. This may lead to an influx of patients for the few US specialists. Is that the intent? Or is there a plan to train more specialists? ► Is there sufficient infrastructure in place to deal with the large percentage of undiagnosed patients that this report refers to? ► We wondered who would take responsibility for the follow up work or will this expensive report end up like the UK CMO, 2003 report whose recommendations were not acted upon? ► If CFS and ME have traditionally had different criteria as stated in the report and the IOM report used ME/CFS as in the CCC then it was somewhat unclear whether this report meant to combine the two definitions into one ► Most ME, CFS or ME/CFS research has been performed using the CDC criteria and more Invest in ME (Charity Nr. 1114035) www.investinme.org Page 28 of 57

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