XMRV and the Ramsay Research Fund
Sunday, 21 February 2010 08:51
The ME Association's Ramsay Research Fund (RRF) is a separate ring-fenced research fund that supports biomedical studies aimed at increasing our understanding of the underlying disease process in ME/CFS as well as clinical studies aimed at finding more effective forms of treatment.
The full cost of the general administration of the RRF is paid for out of our general unrestricted funds. So there are no staff salaries involved in administering the RRF and all donations go towards research activity.
Full details of research that has been funded by the RRF in the past few years, almost all of which has been published in reputable peer-review scientific journals, can be found in the MEA website summary.
Full details of studies that are currently being funded, or are about to be funded, can always be found in the RESEARCH SECTION of the most recent MEA Board of Trustees website summary. January 2010 summary.
Research that has been funded by the RRF and published within the past year includes:
Gene expression in ME/CFS by Professor John Gow et al. :
Factors involved in the development of severe ME/CFS by Professor Derek Pheby.
Research being funded by the RRF that is currently in progress includes:
Muscle energy metabolism in ME/CFS (neuroimaging study) - Professor Julia Newton et al, University of Newcastle
Various initiatives involved in post-mortem tissue research. These include funding for the retrieval and examination of post-mortem specimens and the setting up of a post-mortem brain and tissue bank. Part of this work involves funding a feasibility study which is examining all aspects - ethical, financial, legal, practical - of setting up such a facility. There is an article on this post-mortem research, and body donation procedures for medical research, in the February issue of ME Essential magazine.
XMRV RESEARCH: The MEA has made it clear in our regular website summaries that we are very keen to consider good quality funding proposals relating to XMRV. To take this forward Dr Shepherd has met, or been in contact, with almost all of the UK virologists and retrovirologists who are involved in XMRV and ME/CFS research. However, the MEA/RRF has not yet been approached for funding assistance - so none has been given.
We are currently discussing a small study that will retest anyone in the UK who has had their blood tested for XMRV in the United States and wishes to take part. No funding has yet been made. We are also keen to try and sort out why there is such a stark difference between the emphatic negative results from the two UK studies and the very positive results from the US. This and other ideas relating to XMRV research are being discussed on an on-going basis with the relevant experts here in the UK.
NB: The most recent Gow, Kerr et al study, which found no evidence of XMRV in ME/CFS patients, was supported by the UK Medical Research Council; The Wellcome Trust, The Cunningham Trust and the CFS Research Foundation. MEA position statement on this study.
DONATIONS TO RRF:If anyone wishes to donate to the RRF, there are a number of ways of doing so - please see the MEA website or ME Essential magazine. If anyone wants to donate towards the post-mortem research, they may wish to do so through sponsoring Ed Stafford and his increasingly successful attempt to walk the entire length of the River Amazon for MEA/RRF research.
Dr Charles Shepherd
Hon Medical Adviser, ME Association
Sunday, 21 February 2010 08:51
The ME Association's Ramsay Research Fund (RRF) is a separate ring-fenced research fund that supports biomedical studies aimed at increasing our understanding of the underlying disease process in ME/CFS as well as clinical studies aimed at finding more effective forms of treatment.
The full cost of the general administration of the RRF is paid for out of our general unrestricted funds. So there are no staff salaries involved in administering the RRF and all donations go towards research activity.
Full details of research that has been funded by the RRF in the past few years, almost all of which has been published in reputable peer-review scientific journals, can be found in the MEA website summary.
Full details of studies that are currently being funded, or are about to be funded, can always be found in the RESEARCH SECTION of the most recent MEA Board of Trustees website summary. January 2010 summary.
Research that has been funded by the RRF and published within the past year includes:
Gene expression in ME/CFS by Professor John Gow et al. :
Factors involved in the development of severe ME/CFS by Professor Derek Pheby.
Research being funded by the RRF that is currently in progress includes:
Muscle energy metabolism in ME/CFS (neuroimaging study) - Professor Julia Newton et al, University of Newcastle
Various initiatives involved in post-mortem tissue research. These include funding for the retrieval and examination of post-mortem specimens and the setting up of a post-mortem brain and tissue bank. Part of this work involves funding a feasibility study which is examining all aspects - ethical, financial, legal, practical - of setting up such a facility. There is an article on this post-mortem research, and body donation procedures for medical research, in the February issue of ME Essential magazine.
XMRV RESEARCH: The MEA has made it clear in our regular website summaries that we are very keen to consider good quality funding proposals relating to XMRV. To take this forward Dr Shepherd has met, or been in contact, with almost all of the UK virologists and retrovirologists who are involved in XMRV and ME/CFS research. However, the MEA/RRF has not yet been approached for funding assistance - so none has been given.
We are currently discussing a small study that will retest anyone in the UK who has had their blood tested for XMRV in the United States and wishes to take part. No funding has yet been made. We are also keen to try and sort out why there is such a stark difference between the emphatic negative results from the two UK studies and the very positive results from the US. This and other ideas relating to XMRV research are being discussed on an on-going basis with the relevant experts here in the UK.
NB: The most recent Gow, Kerr et al study, which found no evidence of XMRV in ME/CFS patients, was supported by the UK Medical Research Council; The Wellcome Trust, The Cunningham Trust and the CFS Research Foundation. MEA position statement on this study.
DONATIONS TO RRF:If anyone wishes to donate to the RRF, there are a number of ways of doing so - please see the MEA website or ME Essential magazine. If anyone wants to donate towards the post-mortem research, they may wish to do so through sponsoring Ed Stafford and his increasingly successful attempt to walk the entire length of the River Amazon for MEA/RRF research.
Dr Charles Shepherd
Hon Medical Adviser, ME Association