Journal of IiME Volume 7 Issue 1 THE CHARITY PROPOSAL-THE BIG CAUSE With the objective of improving and promoting education about ME amongst healthcare staff and raising awareness of the disease the charity feels that the best way to make progress is to establish a national centre of excellence for ME. To this end we have established momentum and resources to begin work on establishing a base of research which could develop into a facility leading to a UK Centre of Excellence for Biomedical Research into ME. (May 2013) describing it as "SERIOUS or LIFE THREATENING", on a par with cancer or /heart failure (click here) and the UK government recognise ME as a chronic neurological illness. To download our poster please use this url - http://www.investinme.org/Documents/ME%20Aw areness/LBM%20Oct2012/Gut%20PROD%20A4.pdf BACKGROUND People with ME need early and correct diagnosis, proper treatment and advice. The current status of services for people with ME and their families in the UK is poor with little knowledge of biomedical research being applied and possible treatments not being made available to patients or healthcare staff. Simplistic and ineffectual, even damaging psychological therapies are offered in place of real treatments - wasting public money and doing nothing to help patients. This has resulted in ME patients having no real healthcare service and far too little progress in attracting new researchers or clinicians to study the disease. The dangers for people with ME having no proper clinical examination and no access to possible treatments is that the disease can develop into more severe forms with significant loss of functioning. There is also the danger of mis- or missed diagnosis – a common problem with people thought to suffer from ME. The USA Food & Drugs Agency (FDA) recently decided to re-categorise ME in "Immune Diseases - Invest in ME (Charity Nr. 1114035) THE AIMS and OBJECTIVES After five years of campaigning for awareness and promoting better education about ME the charity felt that the best way to make progress is to establish a national centre of excellence for ME. The Invest in ME Steering Group was formed - consisting of carers of people with ME and scientific advisors - to begin work on establishing a facility leading to a UK Centre of Excellence for Biomedical Research into ME. We believe that a change needs to be made in the way service provision for ME patients is carried out and is suggesting a simple but effective structure for providing services and instituting major biomedical research into this disease which will have profound effects on the way ME is treated in the UK and establish a hub of scientific and clinical excellence for ME within Europe. THE RESEARCH With the help of leading researchers the charity is proposing a number of initial projects which would help establish a research base and lead to further projects being initiated based on findings. It is not often realised that 60-70% of the immune system is located in the gut as a vast network of lymph tissue referred to as GALT (gut associated lymphatic tissue). The research highlighted in the proposal involves looking at gut microbiota, which is the latest thinking in how to go about research. In USA, renowned pathogen hunter Dr. Ian Lipkin and specialist clinician Dr. Nancy Klimas have all been suggesting a similar approach. The charity is keen to replicate the recent Norwegian Haukeland University findings using Rituximab as well as a number of new ideas being developed. The aim is to build on this but the research has to start somewhere and so the researchers will begin afresh with the best approach. This research proposal would build a strategy of research which would involve patients, clinicians and researchers working together. www.investinme.org Page 10 of 36
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