Journal of IiME Volume 9 Issue 1 looked at evidence about ME from a wide range of sources. Our conference facilitated the hearing of Drs Byron Hyde and Bruce Carruthers. The Gibson report is still a very valuable historical document and if some of the recommendations from the report had been acted upon then people with ME and their families might well be in a different (and better) position today. This year the US Institute of Medicine produced a report for US diagnostic purposes. Three of the speakers at this year’s conference were involved with the report. Professor Betsy Keller was one of the group members and Professor Maureen Hanson and Dr Dan Peterson were among the reviewers. The IOM working group looked at the published research as well as the so called grey literature in a systematic way and what they found was the shocking fact that little replicable or validated research existed compared to the number of people affected by this disease. The numerous definitions being used have complicated all research and the lack of some common and agreed protocols and standards has affected diagnosis and therefore treatment. Samples need to be shared so that different research groups can make sure they are finding the same thing and areas of expertise are being utilised effectively. Such sharing is taking place with IiME funded researchers at UCL and IFR/UEA and some of the research will be presented at the conference. Amongst the speakers at the Invest in ME Biomedical Research into ME Colloquium 5 (BRMEC5 – taking placed on the two days prior to the IIMEC10 conference) is Dr Luis Nacul and the rest of the UK biobank team who have also worked on standardising protocols to make sure the samples they collect are as representative of the patient population as possible in the absence of objective biomarkers. From Haukeland University hospital in Bergen Dr Oystein Fluge and Professor Olav Mella return to present at the Invest in ME conference once again to talk about their current research. May 2015 In 2012 Dr Don Staines, co-Chair of the Invest in ME/Alison Hunter Memorial Foundation BRMEC2 Clinical Autoimmunity Working Group, and now professor and co-director at the N.C.N.E.D., stated - ‘The recent discovery from researchers in Norway that an anti- CD20 B cell- depleting drug had a marked benefit in the treatment of ME/CFS has sent a clear message to scientists and medical practitioners around the world that this disease may have an autoimmune origin. The findings of Drs Fluge and Mella and their coworkers are consistent with theories previously published that ME/CFS may be an autoimmune disease. Despite compelling evidence that this disease is linked epidemiologically to infection and the disorder possibly being a post-infection disturbance of the immune system, little funding has gone into studies of autoimmunity. This is clearly a multi-system illness which has been badly managed in terms of the research agenda.’ While the clinicians who made the discovery, Dr Oystein Fluge and Dr Olav Mella, and coworkers, remain guarded in drawing unwarranted conclusions from the study published in PLoS late in 2011, a large multicentre study is now underway. We are delighted to welcome them back to the IIME conference. We now can see more progress being made. The Chronic Fatigue Initiative funded by the Hutchins Family Foundation has produced research that has been noticed by the media. Drs Mady Hornig and Dan Peterson are among the authors of papers from this initiative. One study published in Science Advances, looked at plasma immune signatures and the other one published in Molecular Psychiatry, looked at cytokines in spinal fluid of ME/CFS patients. These research results may help in finding biomarkers to aid diagnostics. Invest in ME (Charity Nr. 1114035) www.investinme.org Page 4 of 57
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