Journal of IiMER research that they can look at otherwise the guideline remains in a vacuum. The current recommendation of GET was brought up as harmful and putting children in danger. The severely ill need information and support. Professor Edwards mentioned MS patients get 6 monthly neurology appointments but ME patients get nothing. Problems with FITNET were mentioned and Dr Radford was aware of this and stated that FITNET was being reviewed. Dr Gibson said research is moving toward finding biomarkers. Metabolomics was proving promising as presented at the Invest in ME Research international conference. The approach has been too simplistic in the past. Dr Radford mentioned she is involved in an alliance of rare diseases and that there are hundreds of diseases in the same situation as ME. The charity said these rare diseases are recognised and patients are not dismissed and stigmatised by the establishment the way ME patients are. ME patients’ healthcare complaints, unrelated to ME, are often ignored and dismissed due to the patient’s ME label. The importance of accurate diagnosis with careful history taking was mentioned as endocrine disorders are often misdiagnosed as ME. Actions Dr Radford finished the meeting by summing up action points Highlight emerging research (relevant for NICE guidelines) Mention IiMER colloquium/conference to people of influence Agree that a new meeting arranged by the charity will take place later in the year when the Norwegian rituximab trial results would be known by the team involved. IiMER Summary Did we expect more from the visit with the CMO? Of course! Our aim is not to have just a cosy chat and keep the status quo. Action is required. As we stated before ME is a UK/worldwide problem - we did expect (and request) that all UK CMOs attend. But we have the CMO's attention now, to some extent. We will not leave it alone. We have a follow-up meeting planned and we will ensure that the CMOs of UK do not remain in the dark about the seriousness or severity of the issues with this disease. PostScript: At the CMO’s suggestion the charity contacted Simon Stevens of NHS England and Sir Bruce Keogh. At the current point in time we have to state that the treatment of our request for a meeting by Sir Bruce has been not just disappointing but appallingly apathetic to the plight of people with ME and their families. References ► Articles on PACE Trial ► Articles on ME/CFS by Margaret Williams and Professor Malcolm Hooper www.investinme.org Page 39 of 82
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