Journal of IiME Volume 9 Issue 1 recently the CCC or the combination of CDC and CCC and hardly any research has been performed using the ICC or the Ramsay Criteria. The ICC is based on research that has used CCC or CDC criteria. This just goes on to show that researchers use various criteria and then it is used as evidence for any of the acronyms of CFS, ME/CFS or ME depending on the users and it would be sensible to use criteria that are inclusive for diagnosis but allows for specific phenotypes to be selected for research. ► The IOM panel included ICC signatories Drs Lucinda Bateman and Nancy Klimas. The ICC 2011 states that the panel recommended the use of myalgic encephalomyelitis for patients who meet the ICC criteria because a distinctive disease entity should have one name. So does this mean that the ICC should be used for ME and the IOM report for SEID? ► Less than one-third of medical schools include ME/CFS-specific information in the curriculum ► For years ME and CFS patients have been let down by the disbelieving medical profession and hopefully this report benefits patients rather than cause yet more problems ► The few doctors/researchers that have believed in patients have been let down by their colleagues and research funding bodies and we hope that the HHS and NIH now take ME and SEID seriously and allocate funding based on them being physical diseases ► The report acknowledges high societal costs and recommends that the guidelines are revisited in no more than five years to allow new research findings to be taken into account ► “Ideally, experienced individuals without significant conflicts of interest should conduct a May 2015 systematic literature review to address the key questions.” “Members of this group should clearly disclose their potential conflicts of interest, and the conveners of the group should try to limit the number of members with significant conflicts, who should in no case represent a majority of the group’s membership.” ► “There is no adequate evidence to enable comment on the manifestations of ME/CFS across the life course.” ► This is an acknowledgement which NICE and the MRC have never made in the UK where vested interests continue to affect what is funded or reported. In Conclusion - Going Forward ► Despite “Patients, advocates, researchers, and clinicians expressed strong opposition to the study, arguing that the IOM lacks the expertise to develop clinical case definitions” the IOM insisted on continuing this exercise. They therefore set up a unique opportunity to make things better. ► Will this report promote the prompt diagnosis of patients with this complex, multisystem, and often devastating disorder; enhance public understanding; and provide a firm foundation for future improvements in diagnosis and treatment? ► After so long a period where governments, medical research councils, health departments and some of those supporting organisations completely abrogated their responsibilities to patients with this disease then it might be too optimistic to expect one report to overturn all that has been allowed to be wrong with the research into, perception and treatment of ME. ► But a start has to be made. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 29 of 57
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