04 September 2008
Action for M.E. funds two pilot research projects (UK)
http://www.afme.org.uk/news.asp?newsid=369
02 September 2008
Action for M.E. funds two pilot research projects...
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."
Tissue bank
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.