Journal of IiME Volume 4 Issue 1 www.investinme.org The 5th Invest in ME International ME/CFS Conference 2010 (continued) A “back to the future” return builds on earlier clinical observations and takes us back to the question of persistent virus infections and nature of such infections associated with increasing disability in the sufferer. Professor Nora Chapman addresses the complexities of such infections at the cellular level revealing the ways I which these viruses are able to avoid destruction by the immune system and initiate disabling illness. Dr John Chia, a previous conference speaker, examines the specific role of enteroviruses in ME and links this to both diagnosis and treatment for patients. Coxsacchie viruses have long been known to be both neurotropic and cardiotropic – they are multi-system pathogens- and many people with ME have compromised heart function. Dr Cheney has made a special study of the cellular energy defects in cardiac function that will help our understanding of ME and ways it can be diagnosed and treated Dr Jonathan Kerr’s studies in gene expression in ME are groundbreaking and have deepened our understanding of the illness and provided a sound clinical basis for diagnosis, sub-groups and possible new treatments. One very important aspect of his work has been the inclusion of the severely affected patients who are usually not included in any research studies. ME are the initials for myalgic encephalomyelitis = muscle pain with inflammation of the brain and spinal cord. The inflammatory nature of ME had long been recognised and has been the subject of much research. Dr Nancy Klimas is world famous for her work in inflammation that offers the possibility of finding biomarkers that will confirm the biomedical basis of ME and provide other physicians with an essential tool for diagnosis and possible treatment of ME. Professor Brigitte Huber has found associations between mononucleosis (Epstein Barr virus, EBV)-related ME and a human endogenous retrovirus, HERV, that offers the possibility of new biomarkers for this illness and introduces us to the world of retroviruses. Annette Whittemore shares much in common with many people at the conference in that she is the mother of a child (now a young woman) who Invest in ME (Charity Nr. 1114035) has suffered with ME for many years. Like many here today she has devoted her life and family resources to fighting this illness and finding better ways of understanding and treating ME. Due to her initiative and generosity the Whittemore–Peterson Institute, WPI, was established to provide the first centre for integrated medical care for people with ME, bringing together patients, clinicians and research staff to combat this illness. The groundbreaking and astonishing discovery of XMRV (Xenotropic Murine-like Retrovirus) emerged as a major collaborative research work from the WPI and is a first in this field. The XMRV ‘bombshell’ took the ME world by storm and offers a possible integrated understanding of earlier diverse and extensive research studies on ME. This is advanced science of very high quality. Dr Judy Mikovits was a key member of the team that first reported the association between XMRV and ME. This sensational discovery, coming out of ‘left field‘, caused astonishment, delight to many but regrettably also acrimony, accusation and spiteful comments. Several attempts to replicate this study were unsuccessful but on close examination all the attempts at replication were found to be seriously flawed since the same methodology was not followed. So we are particularly privileged to have Judy to bring us up to date in the implications of the discovery of XMRV for the world of ME. We have the world expert on this topic making our final presentation. Today’s conference is aflame with hope and new possibilities. No longer can the old, tired, defensive psychiatric view of ME be sustained or remain credible, groundbreaking advanced science and medicine has vindicated the humane caring compassion of those involved with suffering ME patients and given them new hope for effective treatment of this complex, chronic, disabling illness. Just as the recent election in the UK has ushered in a new era of political change so, I believe, this conference has changed the medical and scientific landscape for ME – cause for celebration and renewed commitment to our common goals. This conference will re-energise all seeking truth and a proper justice for ME. Be energised! Malcolm Hooper May 2010 Page 9/56
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