ME Association (Ramsay Research Fund) Medical Research
A. Current Research Projects – long-term ongoing initiatives:
1) The UK ME/CFS Biobank
The UK ME/CFS Biobank was launched in 2011. It is led and managed by the well-established CURE-ME research team at the London School of Hygiene and Tropical Medicine.
From the very beginning, the ME Association Ramsay Research Fund has provided significant finance for this charity-backed project and because we see real value in this initiative, from 2015 we will continue to support it as a major investor.
2) Post mortem Tissue Sampling and The UK ME/CFS Post mortem Tissue Bank
The ME Association is the only ME charity involved in the collection of post mortem tissue samples from people diagnosed with ME/CFS in the UK and our aim is to establish a national ME/CFS Post mortem Tissue Bank where greater numbers of samples can be collected and stored for vital research.
If you would like to donate post mortem tissue for ME/CFS research then you need to make this clear by completing a Statement of Intent which can be kept with your Will or in a Codicil to your Will. Your next of kin will also need to know about this instruction and where they can locate it.
3) The ME/CFS Disease Register – position on 23 August 2016
Action for M.E., the ME Association and ME Research UK are jointly releasing this statement to update our supporters on the ME/CFS Disease Register project, which has now come to an end. The maintenance and regular update of all the information held in the Disease Register is no longer a priority for the limited research funds available to us, and we explain why this is below.
The ME/CFS Disease Register project was begun in an effort to develop a population-based disease register for the illness. Led by Prof Derek Pheby, it was housed initially alongside the ME/CFS biobank at the London School of Hygiene and Tropical Medicine, and was one of six sub-projects funded by the Big Lottery Fund as part of the National ME/CFS Observatory project.
4) UK Clinical Trial of Rituximab
The ME Association believes that the drug Rituximab represents the most important development so far in terms of a potential disease altering treatment for at least a sub-group of people with ME/CFS.
Applications for funding from any high quality research group in the UK who wants to carry out a clinical trial would be especially welcome, and the ME Association are also willing to help fund a multicentre international trial – provided it has a UK arm.
The MEA Ramsay Research Fund has currently set aside over £60,000 for a viable UK trial and these funds will remain separate from other research funds until such time as a trial is deemed feasible.
B. Current Research Studies – funded initiatives currently underway:
Exclusive Research from Ramsay Research Fund
1) Effect of Exercise on Cognitive and Immune System Function
Lead researchers: Dr Amolak Bansal and Dr Megan Arroll
RRF investment = £32,000
2) Exercise-induced Fatigue and Post-Exertional Malaise
Lead researchers: Professor Jo Nijs and Dr Lorna Paul
RRF investment = £31,000
3) Sleep Disturbance and Management
Lead researchers: Professor Jason Ellis and Professor Julia Newton
RRF investment = £15,000
4) Comparison of results from a commercial and NHS blood test to assess mitochondrial function
Lead researcher: Dr Sarah Jayne Boulton
RRF investment = £21,305
Collaborative Research and Donations:
5) Abnormalities in Mitochondrial Function in Skeletal Muscle
Lead researcher: Professor Anne McArdle
This research is being jointly funded with the Medical Research Council
RRF investment = £30,000
6) Immune System Dysfunction
Lead researchers: Professor Stephen Todryk and Professor Julia Newton
This research is being jointly funded with Action for M.E.
RRF investment = £19,500
7) Patterns of Mitochondrial DNA Variation
Lead researcher: Dr Joanna Elson
This research is being funded by Action for M.E.
RRF donation = £5,000