02 September 2008
The trustees of Action for M.E. are delighted to announce that they have selected two pilot research projects for funding: firstly, a feasibility study which will result in a high-quality proposal for a post-mortem tissue bank for the systematic study of M.E./CFS and secondly, the establishment of a National Outcomes Database which will combine the data from 46 clinical teams in England, providing the infrastructure needed for large scale biomedical and treatment studies eg. genetic studies in CFS/M.E. A total of just under £80,000 has been awarded.
The grants are possible thanks to the generosity of a number of supporters, especially Camilla Dingee (see InterAction 61, p 25) and in particular Robert and Lizzie Cathery (see InterAction 65, p 24), without whose highly successful fundraising dinner we would not have been able to host - in conjunction with the Medical Research Council - the Research Summit which resulted in us receiving over 20 applications. Our thanks again to all the researchers and clinicians who participated.
Sir Peter Spencer has described the final selection of pilot projects as strategic, as they each have long term potential for developing further work into disease mechanisms.
"The idea is that once the pilots are complete, they will attract far bigger research grants from the major funders. This is about working together to build the evidence base - people with M.E., other charities, researchers and clinicians."
Dr Luis C Nacul and colleagues from the London School of Hygiene and Tropical Medicine (LSHTM) and the Essex Neurosciences Centre will explore the extent of interest in, ethics of and implications for the establishment of a post-mortem tissue bank, to which people with M.E. could donate their bodies after death, specifically for M.E. research.
Dr Nacul says: "M.E. is poorly understood by many clinicians and, as a result, many patients are incorrectly diagnosed and poorly treated. We are not sure what causes it and what abnormalities take place in those with the disease. One option would be to examine parts of the body, under the microscope, to see what may have gone wrong in people who had M.E./CFS who have died for any reason.
"This pilot research will assess the level of interest in establishing a tissue bank amongst people with M.E., researchers, specialists and involve them and others - including those who are already interested in the idea - in considering how best to take this forward. This should put us in a good position to take forward a formal proposal to implement a tissue bank for the study of M.E./CFS."
Dr Nacul is an honorary clinical lecturer at the LSHTM and acting consultant in public health at the Health Protection Agency.
National outcomes database
Dr Esther Crawley and colleagues from the University of Bristol, University of Nottingham and Bart's Hospital, London will set up a National Outcomes Database which will allow the 46 clinical teams that are part of the NHS CFS/M.E. Collaborative to enter data used for assessment and measuring outcomes onto one database. This will be done by extending a system that is currently in use in the Bristol area.
Dr Crawley said: "The system for data collection and the Regional Outcome Database has been developed and trialled extensively over two years. The regional database is sufficiently powerful and sophisticated to enable large scale national data collection which will allow us to use it as a National Outcomes Database.
"At the end of one year this will produce information about the largest cohort of adults and children with CFS/M.E. in the world, with an anticipated 3,000 adults and 500 children added each year.
"This will enable us to apply for further funding to answer the following questions: what happens to people with CFS/M.E.? Are there differences in the way we provide services that change the outcome for adults and children with CFS/M.E.? Are there differences in how people present to doctors (for example how severely ill they are) that change the outcome for CFS/ME..?
"In addition, this cohort will provide the infrastructure needed for large scale biomedical and treatment studies: for example genetic studies in CFS/M.E."
Dr Crawley is Chair of the National NHS Collaborative, clinical lead of the regional paediatric CFS/M.E. team and lead of the Bristol Paediatric CFS/M.E. team. Her research team is currently doing research into the epidemiology of CFS/ME in children, as well as prognostic indicators using a longitudinal cohort of over 300 children with CFS/ME.