The MEA Ramsay Research Fund: guide to policy

Please note that a permanent link to this policy statement will shortly be provided on this website, and the statement will also appear in the July issue of our quarterly ME Essential magazine.

THE MEA RAMSAY RESEARCH FUND (RRF)

One of the many scandalous aspects of ME/CFS is the fact that research into the underlying physical cause of this illness has never been given a high priority by the Medical Research Council (MRC) – the government funded body that plays a major role in stimulating and funding medical research activity here in the UK.  Added to this is the fact that pharmaceutical companies don’t generally regard ME/CFS as a useful avenue to pursue. The result is that almost all research carried out so far into the underlying physical cause has had to be funded by charities or individuals.

The ME Association has always regarded the promotion and funding of medical research to be one of our key priorities.  We do this through our Ramsay Research Fund –named after the late Dr Melvin Ramsay, the consultant in infectious diseases who brought ME to the attention of the medical profession following the famous outbreak at London’s Royal Free Hospital back in 1955. 

 
WHAT SORT OF RESEARCH DOES THE RAMSAY RESEARCH FUND SUPPORT?
 
The Ramsay Research Fund (RRF)  is there to fund any sort of research activity that will help to provide:
  • a better understanding of the underlying physical cause of ME/CFS
  • a diagnostic marker or test
  • an effective form of treatment. 
Large scale research studies, which may require up to three years funding, now cost a considerable amount of money as they involve both staff costs and equipment costs. So this type of funding has to be considered very carefully as it may mean using up a substantial proportion of the money that we can raise during the same period of time.
 
We also have a facility for making small research grants of up to about £2000.  This is money that could be used for a variety of purposes connected to a research study – for example, the purchase of a specific item of equipment. 
 
HOW DO WE RAISE FUNDS FOR RESEARCH?
 
Most of the money comes from MEA members in the form of individual or group donations, or money left in a Will.  We also receive a few anonymous donations. 
 
HOW MUCH MONEY IS SPENT ON ADMINISTRATION?
 
The MEA is very conscious of the fact that people who give money to research want to see it spent of research – not on administration.  So in legal terms the RRF is what is called a restricted fund.  This means that all of the money donated is used for research activity – it cannot be used for any other purpose. Unlike many research charities, we do not employ any staff – full time or even part time – at Head Office to deal with the administration of our research fund. Staff time and administrative costs at Head Office associated with running the RRF are all met out of our general funds.  So this is a very cost effective method of donating money to ME/CFS research.
 
WHAT SORT OF RESEARCH HAS THE MEA FUNDED IN THE PAST FEW YEARS?
 
Over the past twenty years the MEA has funded a considerable number of important research studies.  Some of the recently funded studies include:
 
Professor Mina Behan (died 2005), Dr Fiona Curtis and colleagues at the Department of Neurology, University of Glasgow. 
Study that examined the role of blood brain barrier permeability in ME/CFS.  The blood brain barrier is a cellular barrier that helps to prevent viruses and toxins that may be in the bloodstream from passing into the brain and central nervous system.
Professor Mina Behan became seriously ill towards the end of this study and later died. Preliminary results have been presented at scientific conferences in London (Physiological Society) and Germany (Third Symposium on ‘Signal Transduction in the blood-brain barrier) and although not published the results are available to the scientific community.
 
Professor Ronald Chalmers and colleagues at Saint George’s Hospital Medical School, London. 
Study that investigated the role of diagnostic urinary markers, urinary and plasma organic acids and amino acids, and plasma and urinary carnitine in chronic fatigue syndrome. 
Publications:
Chalmers RA et al.  CFSUM1 and CFSUM2 in urine from patients with chronic fatigue syndrome are methodological artefacts.  Clinica Chimica Acta, 2006, 364, 148 – 158.
Jones MG et al.  Urinary and plasma organic acids and amino acids in chronic fatigue syndrome.  Clinica Chimica Acta, 2005, 361, 150 – 158.
Jones MG et al.  Plasma and urinary carnitine and acylcarnitines in chronic fatigue syndrome.  Clinica Chimica Acta, 2005, 173 – 177.
 
Dr Evalina Georgiades and colleagues at the University of Glasgow. 
Study that examined the function of various brain chemical transmitters – serotonin, dopamine – during rest, exercise and recovery, and their possible role in the production of central fatigue.
Publication: Chronic fatigue syndrome: new evidence for a central fatigue disorder.  Clinical Science, 2003, 105, 213 – 218.
 
Professor John Gow and colleagues at the Institute of Neurological Sciences, University of Glasgow. 
Study that investigated the role of antiviral pathways and markers (ie 2-5A Synthase/Rnase- L) in the assessment of people with ME/CFS. 
Publication: Gow JW et al.  Antiviral pathway activation in patients with chronic fatigue syndrome and acute infection.  Clinical Infectious Diseases, 2001, 23, 2080 – 2081.
 
Dr Derek Pheby and colleagues a the University of the West of England. 
Study that looked at factors that may be involved in the development of severe ME/CFS.
Publication:  Dr Pheby presented the key results from this study to a meeting of the Melvin Ramsay Society in London in April 2007.  The results are now being prepared for publication in a scientific journal.
 
Dr Vance Spence and colleagues at the University of Dundee. 
Study that investigated the role of peripheral blood vessel dilation in ME/CFS.
Publication: Prolonged acetylcholine- induced vasodilation in the peripheral microcirculation of patients with chronic fatigue syndrome.  Clinical Physiology and Functional Imaging, 2003, 23, 282 – 285.
 
Professor Graham Whitehouse and colleagues at the University of Liverpool. 
Study using magnetic resonance neuroimaging to investigate the hippocampal region of the brain.  This study found a significantly reduced concentration of N-acetylaspartate (NAA) in the right hippocampus.  NAA is an important marker of neuronal function. 
Publication:  Brooks JC et al.  Proton magnetic resonance spectroscopy and morphometry of the hippocampus in chronic fatigue syndrome.  British Journal of Radiology, 2000, 73, 1206 – 1208.
 
Rhona Wilson and colleagues at Saint Bartholomew’ s Hospital, London. 
Study by dieticians into the role of dietary modification – ie a low sugar and low yeast/ anti-candida diet  – in ME/CFS.
Publication:  Hobday RA et al.  Chronic fatigue syndrome – impact of a low sugar, low yeast diet on fatigue and quality of life – a randomised intervention trial.  Submitted for publication.
 
WHAT RESEARCH IS CURRENTLY BEING FUNDED BY THE RAMSAY RESEARCH FUND?
 
The RRF is currently funding a very important research study into gene expression.  This is being carried out by Professor John Gow and Dr Gillian Gibson at Glasgow Caledonian University.  The aim of this study is to identify specific genes in people with ME/CFS that have become under expressed or over expressed – an indication of whether they are activating or suppressing metabolic pathways and cellular activities under their control.  Preliminary results suggest that a number of significant abnormalities in gene expression are occurring in ME/CFS – findings that could eventually lead to specific diagnostic markers and treatments aimed at the underlying disease process.
 
WHAT ARE OUR PLANS FOR THE FUTURE?
 
Anyone following reports in ME Essential will know that we are keen to set up a permanent facility here in a UK hospital that will be able to store tissue and post-mortem material from people with ME/CFS.  We are currently discussing these proposals – which will involve a hospital building, staff, and the establishment of a database of willing volunteers – with a group of researchers who are also keen to see such a facility.  A specific fundraising initiative, involving a walk from the source of the River Amazon to where it enters the sea, is currently underway. Click here for more information about this walk.
 
We are also keen to fund studies that will help to fill existing gaps in our knowledge about existing research findings – for example,  the role of immune system chemicals known as cytokines in the production of fatigue.
 
HOW DO RESEARCHERS APPLY FOR GRANTS?
 
We operate a flexible system that encourages researchers to first contact our medical adviser to informally discuss a proposal.  We also publish an open invitation in The Lancet to researchers to submit applications on specific topics.  This is done periodically when we have sufficient funds available to finance one or more major studies.  We are planning to review our major grant application form – when this is completed it will be available to download from the MEA website.  We are currently very willing consider new applications for small research grants. 
 
HOW ARE DECISIONS MADE? 
 
The decision making process is based on guidelines produced by the Association of Medical Research Charities.  This normally involves a process of both internal and external peer review.  The internal peer review involves assessment of the application by trustees and MEA medical advisers.  External peer review involves the application being sent off to one or more independent experts in the area of research being proposed.
 
HOW CAN YOU HELP?
 
If you want to help with MEA-funded research, cheques should be made out to: The MEA Ramsay Research Fund and sent to:  The ME Association, 4 Top Angel, Buckingham MK18 1TH
 
ENDS
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