You may have seen these notes on the CMRC before but I'll post them again of the benefit of people who have not seen them
Re: But I'm really desperate that any of the money spent will bring anything good.
I ought to stress that the CMRC does not have any funding or staff and does not/will not be funding any ME/CFS research - certainly in the foreseeable future
A few quick points that people may like to bear in mind when discussing the UK Research Collaborative (CMRC):
1 Like many health professional initiatives in the area of ME/CFS, this involves a group of people who are adding a significant amount of voluntary work to an already very full workload. The Collaborative has no external funding and no permanent staff. If you add up the time taken for meetings, conference attendance and homework, in my case this means adding at least another 7 working days to a voluntary MEA etc workload that is already in excess of 50 hours a week. So there is a limit to what we can achieve with the human and financial resources available.
2 There are a number of positive developments that are taking place/have taken place as a result of the work we have been doing over the past 3 years:
3 A two day annual research conference has been established (which does take a lot of time to organise) that is almost exclusively concerned with biomedical research. The conference is open to any researcher who wishes to attend and we have managed to bring in an excellent mix of UK based and overseas researchers who are already involved in ME/CFS research as well as researchers who are new to the subject. In addition, we have a growing number of researchers from overseas, PhD students and medical students. There is no other annual ME/CFS research conference taking place anywhere else in the world that is organised on this basis.
4 We are progressively bringing in major research funding organisations into the collaborative - recent examples include Arthritis Research UK and The Welcome Trust - and have established firm links with all the major government research funders (eg MRC, NIHR)
5 We are now working on Professor Stephen Holgate's Grand Challenge. This will involve the collection of a vast amount of clinical data and biological samples from over 10,000 people with ME/CFS here in the UK. A wide range of experts in epidemiology, genomics, metabolomics, proteomics etc have accepted the inivitation to attend the RC Workshop in April. This will then proceed to preparing what is possibly the largest ever reseach funding application in the history of ME/CFS being made
6 As with all collaboratives there are differences of opinion relating to almost everything we discuss and I clearly have disagreements relating to how to deal with criticism of research that involves another member of the collaborative and the role of the SMC. But these are relatively minor issues and only take up a very small proprtion of our time (the discussion on the new Code of Conduct took about 10 minutes at rhe Board meeting last week)
7 Professor Stephen Holgate has played a crucial role in setting up the CMRC - partly based on a research collaborative that he set up for lung disease, which is his speciality. Anyone who has met and spoken with Stephen will know that he is a very caring and compassionate physician who reallly wants to get to the bottom of what is causing this illness and to find effective forms of treatment. There aren't any other doctors around who have real influence in high places when it comes to biomedical research into ME/CFS and who can succeed in binging in colleagues like Professor Hugh Perry (Chair of MRC Neurosciences Board and a Professor of Experimental Pathology) into a group like this.
8 So, in my opinion, the positives associated with setting up the CMRC far outweigh any disadvantages
9 Would research into ME/CFS here in the UK really be in a better position if, as some people want, the CMRC packed up, or some of the charity members left? I think not…..
Dr Charles Shepherd
