Journal of IiME Volume 5 Issue 1 (May 2011) A UK Centre for Biomedical Research into ME Invest in MEβ€Ÿs outline proposal At the 5th Invest in ME International ME/CFS Conference in London in May 2010 Invest in ME announced that we had entered into discussions with the University of East Anglia to instigate a research facility for ME. Discussions continued after the conference and we decided to publicise our attempt to set up this facility. Below is a summary of information relating to a proposal which was formulated by an Invest in ME steering group that was formed to oversee the setting up of this facility. 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 current biomedical research being applied and possible treatments not being made available to patients or healthcare staff. This has resulted in ME patients having no service and there being little progress in attracting new researchers or clinicians to study the disease. The dangers for people with ME of 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 AIMS and OBJECTIVES After five years of campaigning for awareness and promoting better education about ME/CFS 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 (ISG) was formed - consisting of carers of people with ME - to begin work on establishing a facility leading to a UK Centre of Excellence for Biomedical Research into ME. The ISG believe that a change needs to be Invest in ME (Charity Nr. 1114035) 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/CFS is treated in the UK and establish a hub of scientific and clinical excellence for ME within Europe. THE PROPOSAL The ISG propose for a facility to be instigated with four main elements for diagnosis, treatment and research into ME/CFS – service commissioning, service provision with clinical diagnosis and examinations, translational biomedical research and a research database to allow for more research and improved training of healthcare staff. Figure 1 shows the elements of the model with patient care and treatment at the centre of the model. The proposal would be located around the Norwich Research Park in Norfolk. This area contains world-class facilities with a leading university (the University of East Anglia (UEA)), leading research institutes and a modern university hospital (the Norfolk and Norwich University Hospital) - all of which complement the necessary biomedical research which would take place. Service Commissioning Service commissioning would be performed by the local PCT. The service would require early and correct diagnosis, examination and Continued page 31 www.investinme.org Page 30/58

31 Publizr Home

You need flash player to view this online publication