Journal of IiMER Volume 13 Issue 1 Invest in ME Research A Centre of Excellence for ME The charity's proposal for a Centre of Excellence for ME was first made in 2010, after having sat in meetings with the NHS for several years - wasting time and effort where there seemed little progress in attempts to improve things for people with ME. The concept is designed to create a hub of high-quality translational biomedical research into ME using standard and up-to-date guidelines and protocols that allow accurate diagnosis based on relevant tests. These would consist of full examinations, clinical diagnosis, translational biomedical research, clinical trials, bioinformatics, biobank(s) to allow for more research opportunities and support) and improved education and training of healthcare staff. By using the facilities in the Norwich Research Park, the opportunity has been created for clinical trials to be carried out and a central point for medical education on ME to be established. With the help of the Let's Do It For ME campaign our foundation research project was funded and established and began in 2013 at University of East Anglia (UEA)/Quadram Institute (QI) in Norwich Research Park. This was the first crowdfunded PhD for ME. Further projects are now u Norwich Research Park. Concentrating on a Centre of Excellenc hub does not mean that all research must be performed at the one location. IiMER has also been funding research and a PhD studentship at UCL. Thanks to amazing support from The Hendrie Foundation B-cell research was initiated which allowed a preliminary study to be established and performed prior to the UK rituximab clinical trial. The charity had been keen to replicate the Norwegian Rituximab trial find and, in 2012, the charity announced its intention to facilitate and fund a clin trial of rituximab. Invest in ME Research (Charity Nr. 1153730) Dr Oystein Fluge and his team from Haukeland University Hospital in Bergen, Norway, visited Norwich in January 2017 to collaborate with the researchers from UEA/QI. Ultimately, the Norwegian Phase III rituximab trial proved negative but much was gained by establishing necessary collaborations that are needed in such a trial and the work was not wasted. Research, at least in UK, depends on rules, regulations, ethics etc. that all have to be fulfilled. Not often realised is that one of the biggest problems we have managed to overcome was the reluctance of established researchers to enter this field. Now that has been achieved then we have to and expand upon it. rituximab trial in Norway turned o be more positive then we could now have been seeing the elements e Centre coming into play to show what could be done. ertheless, new discussions are erway to achieve this. The new building for the Quadram Institute provides new facilities and new possibilities and publicity for research into ME, and a coordinated environment where the Medical School, Clinical Trials Unit and research lab will be located together. Park is described by Quadram r Ian Charles as follows - investinme.org Page 9 of 52

10 Publizr Home

You need flash player to view this online publication