Journal of IiME Volume 9 Issue 1 defining symptom that patients say was missing from CDC Fukuda ► Both the IOM report and the P2P draft report call for more research and highlight the serious lack of research into this area of medicine compared to the numbers of patients involved ► “Literature on mortality associated with ME/CFS is sparse.” ► Also subgrouping was a task to be analysed by the IOM committee but due to the sparcity of research that was not possible. ► The implicit result of the above commentary is a direct condemnation of the research and funding policies of the UK Medical Research Council and US National Institute for Health ► This report is essentially far better than the UK CFS/ME NICE guidelines which were heavily biased toward CBT and GET and did not encourage, for example, further investigation into the promising IVIG paediatric research (Rowe, 1997) which the IOM does ► The IOM committee declared unequivocally that ME/CFS is a physical illness, a disease ► The IOM definition and the name goes against treatments such as CBT and GET and contradicts the P2P report in that respect. ► The report states that ME/CFS is a diagnosis to be made and provides good suggestions for asking questions and eliciting medical history as well as assessing supportive symptoms such as sleep disturbance and pain. ► There needs to be extensive medical education to make more doctors confident in making the diagnosis but we need centres of excellence (such as proposed by IiME) and experienced consultants to oversee the education. May 2015 ► Diagnosing patients according to them fitting in the diagnostic criteria rather than by exclusion of other illnesses is good. ► One of the committee’s most important conclusions is that a thorough history, physical examination, and targeted work-up are necessary and often sufficient for diagnosis of ME/CFS (a point often emphasized by clinicians speaking at IiME conferences). ► It is also all the more important to invest in fundamental research that can come up with objective and easily implemented tools for aiding diagnostic accuracy. ► “First and foremost, listening to patients and taking a careful history are key diagnostic tools.” ► Patients who have not yet been symptomatic for 6 months should be followed over time to see whether they meet criteria for ME/CFS at a later time. ► The report mentions objective tests such as CPET or tilt test being useful for gaining social security but not necessarily for diagnosis due to risk for worsening the patient's condition ► The report calls for research into biomarkers and acknowledged there being sufficient evidence for immune dysfunction despite there not being reliable markers for clinical use yet ► The report recognises that most patients never regain their pre-illness levels of health or functioning ► The report recognises inappropriate removal of children from their families in some extreme cases – though perhaps more common in the backward UK environment ► The report rejects childhood trauma and somatisation as being part of paediatric cases ► The IOM recognise the adverse impact on education from this disease for children. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 27 of 57

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