MEA Ramsay Research Fund – what does it do?

Below is a summary of current and recently completed research that is/has been funded by the MEA Ramsay Research Fund.

The summary relates to the discussions on research activity that took place at the last meeting in March 2011 of the MEA Board of Trustees.

RESEARCH AND RAMSAY RESEARCH FUND (RRF)

RRF: XMRV and MLV: Trustees discussed the latest XMRV research results from validation studies and the continuing controversy relating to the contamination hypothesis. CS reported on discussions that he continues to have with UK virologists on this subject. The latest XMRV summary can be found in the November issue of ME Essential and on the MEA website: /www.meassociation.org.uk/?p=2240ww.meassociation.org.uk/?p=2240.

The role of the MEA Ramsay Research Fund in supporting UK research groups who want to try and replicate/validate the American findings, or do other relevant work on XMRV was discussed. CS reported on the various contacts he is continuing to have with virologists on how best to take this research forward in the UK – including the initiative by Dr Kate Bishop to re-test anyone here in the UK who has sent a blood sample to the US laboratory.

RRF: Professor Julia Newton et al, University of Newcastle CS reported that this research proceeded according to plan during 2010 and that assessments have been completed on 25 subjects who were recruited via the Northern Regional ME/CFS Clinical Service. The assessment procedures included testing autonomic nervous system function, muscle performance, exercise physiology protocol, and body composition (ie the amount of fat and muscle present). The second phase of the study involved the use of magnetic resonance spectroscopy to assess the way in which muscle is producing energy and lactic acid during exercise. The results are now being prepared for publication.

Further information on this study can be found in the August 2009 issue of ME Essential magazine.

RRF funding = approximately £13,800.

Newcastle University Fatigue Research Symposium: CS met Professor Newton at a research meeting that was held at the University of Newcastle. There were presentations from Professor Newton and colleagues on muscle and autonomic dysfunction research involving people with ME/CFS. The meeting focussed on muscle research and considered the role of fatigue in other medical conditions such as HIV and other infections, mitochondrial myopathies, primary biliary cirrhosis and Sjogren’s syndrome. The session on HIV and fatigue covered the important issue of muscle mitochondrial damage following antiretroviral therapy (AZT) – something that is obviously going to be very relevant if it turns out that XMRV or MLV is a causative factor in ME/CFS and clinical trials involving antiretroviral therapy take place. A summary of the Newcastle meeting is available in the July 2010 issue of ME Essential magazine and on the MEA website: www.meassociation.org.uk/?p=975

An abstract from a recent research paper from Professor Newton’s research group, which relates to an investigation into cardiac (heart) and skeletal muscle (= muscle that moves bones) can be found on the MEA website. An abstract from another recent study from this research group, relating to abnormalities in pH (ie acid) handling by skeletal muscle, can be found here: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2009.02160.x/abstract

RRF: Factors involved in the development of severe ME/CFS The results of this questionnaire-based research, carried out by Dr Derek Pheby and Dr Lisa Saffron, and funded by The ME Association, have been published. A link to the paper, can be found on the MEA website: www.meassociation.org.uk/?p=784 There is a vast amount of useful information in this paper for anyone with severe ME/CFS, especially those who are involved in disputes over benefits, social care etc.

RRF funding = approximately £30,000.

RRF: Gene expression research Results from the study into gene expression carried out by Professor John Gow and colleagues in Glasgow, and funded by the RRF, were published in the open access scientific journal, BMC Medical Genomics: https://meassociation.org.uk/?p=642

RRF funding = approximately £38,000.

RRF: Biobank and Post-mortem tissue bank CS updated trustees on both of these research initiatives.

Phase two of the co-funded feasibility study into setting up an ME/CFS blood bank (biobank) and post-mortem tissue bank was completed at the end of last year. This work included consultation with relevant experts and a focus group meeting which allowed a group of people with ME/CFS to freely express their views on the various ethical, legal and practical issues surrounding tissue and post-mortem research. This work has been carried out by Dr Luis Nacul and Dr Eliana Lacerda at the London School of Hygiene and Tropical Medicine. An article summarising all the various MEA post-mortem research initiatives that are taking place can be found on the research section of the MEA website. www.meassociation.org.uk/?p=3765

An article summarising progress so far, and how we intend to deal with the practicalities of setting up both a biobank and tissue bank, can be found in the February 2011 issue of ME Essential magazine.

The results from four post-mortems carried out in the UK were presented and discussed at an international research conference in Australia in December 2010. More information, including the conference presentation abstract, can be found on the MEA website report: www.meassociation.org.uk/?p=3765

A paper describing the way in which we are hoping to set up a tissue bank has been published in the Journal of Clinical Pathology.
An abstract can be found here: http://jcp.bmj.com/content/early/2010/10/05/jcp.2010.082032

CS reported on his visit in February to the opening of the new biobank facility at University College London. This is sited at the Royal Free Hospital in Hampstead, London. Our short term aim – in conjunction with AfME, a very generous private donor who has links to The MEA, and possibly another UK charity – is to set up an ME/CFS biobank during the summer of 2011. We are now confident that we are going to raise around £180,000 – the sum that is required to set up the facility and maintain it for a period of 18 months. Once the biobank has been set up the next stage will be to test the facilities through a small piece of research – which might, for example, involve a virological study. All those involved in the biobank project are very well aware of the need to establish a first class research facility that contains blood samples from well characterised people with ME/CFS (who will initially be recruited through the ME Observatory Disease Register). So we are submitting the proposal to very robust and critical peer review as we go along.

Plans for the post-mortem tissue bank are currently on hold because this will be a far more expensive and time-consuming project to set up.

RRF funding for feasibility studies = approximately £14,000

Trustees agreed at their November 2010 meeting to co-fund an extension to the work that has been carried out by the ME Observatory in setting up a patient database that includes people with ME/CFS who have been recruited from primary (ie GP) care, along with a severely affected group that have been recruited via the database held by the charity CHROME. It was felt that it is essential to keep the patient database maintained and up-to-date because people from this well-characterised clinical group can then be asked to donate blood when, as hoped, we are able to continue to move forward with the establishment of a biobank that will then collect and hold blood samples for research purposes. Trustees agreed to a further extension to this funding so that the database at the London School of Hygiene and Tropical Medicine can now be maintained until July 2011.

RRF Funding for extension till July 2011 = approximately £2,000

Trustees agreed at their previous meeting to some further funding to assist Dr Dominic O’Donovan (neuropathologist at Addenbrooke’s Hospital, Cambridge) with the virological examination of existing post-mortem material.

RRF funding = £500

Donating blood and tissue samples to ME/CFS research: We are aware that people with ME/CFS are very keen to donate blood samples for research studies, and in some cases tissue samples after death. Unfortunately, we cannot accept any blood samples until a biobank facility has been set up and is fully established in a UK hospital or research institute. As far as tissue and post-mortem samples are concerned, the November issue of ME Essential magazine contains information that can be placed in a Will, or as a Codicil to a Will. This gives permission for tissue to be taken after death, along with further information on what we may be able to do with tissue donation prior to a post-mortem tissue bank being set up.

ME Observatory Steering Group The final stages of this work is now complete with several research papers being prepared or submitted for publication. The last MEO meeting discussed the various options for continuing some of the key work being done by the MEO – the Disease Register in particular – when Lottery funding ended in September 2010.

An abstract from the most recent MEO research paper to be published can be found here: www.biomedcentral.com/content/pdf/1471-2296-11-89.pdf

Medical Research Council (MRC) Expert Group and Prioritisation Group on ME/CFS Research Two follow up meetings relating to the MRC research took place last year. Summaries of the presentations and slides used at the research workshop are available via the MEA website. www.meassociation.org.uk/?p=935

Trustees discussed the recent announcements from the MRC regarding action being taken on the recommendations for research priorities that were made by the Prioritisation Group. Details can be found here: www.meassociation.org.uk/?p=4727

Minutes for the prioritisation meeting can be found here: www.mrc.ac.uk/Utilities/Documentrecord/index.htm?d=MRC007174

Lightning Process Trustees held a further short discussion on a controversial new research study that has been announced into the use of the Lightning Process. Costing £164,000, the feasibility study will investigate how children and adolescents could be involved in a randomised controlled trial that will assess the Lightning Process and compare it to specialist medical care. Not surprisingly, a number of concerns and objections have been raised about the possible use of children and adolescents in this type of study and we are continuing to discuss these concerns with our colleagues in other ME/CFS charities. As a result of these discussions The MEA and the Young ME Sufferers Trust (Tymes Trust) issued a joint statement of concern: www.meassociation.org.uk/?page_id=1341

Following a review of the decision, the NRES upheld the original decision to carry out the trial. We remained unhappy with certain aspects of the review process and wrote again to the NRES to take up various points relating to the Minutes of the meeting held in December where the ethics committee decision was reviewed. Trustees discussed the reply and what further action may be appropriate.

A BBC radio discussion from Thursday 11 November about the Lightning Process – which included contributions from Professor Leslie Findley, Dr Charles Shepherd and Phil Parker and was chaired by Anne Diamond – can be heard on YouTube: www.meassociation.org.uk/?p=2921. A transcript is also available on the MEA website.

CBT, GET and Pacing: FINE AND PACE Trials

Responses to publication of the results from the FINE trial appeared on the BMJ website, including one from The MEA. The replies can be accessed via the MEA website: www.meassociation.org.uk/?p=925

Trustees discussed the way in which results from the MRC funded FINE and PACE trials affected the review of the NICE guideline on ME/CFS and what further action may be appropriate, in addition to our letter to The Lancet, may be appropriate.

Results from a new study from Spain comparing CBT, GET and standard care can be found on the MEA website: www.meassociation.org.uk/?p=3870

Sleep Disorders Conference Following on from his attendance at this conference CS wrote a new MEA information sheet on Restless Legs Syndrome for the February issue of ME Essential and will be updating all our information on the management of sleep disorders.

Invest in ME Conference CS will be attending this meeting in May.

Netherlands Medical Conference CS has been invited to speak at a medical conference in Amsterdam on 12th May.

RRF: NEW RESEARCH PROPOSALS

Trustees held a further discussion on three new research proposals that have been submitted to the RRF for funding – two of which link in with the list of biomedical research priorities that have been identified by the MRC Expert Group on ME/CFS research.

Research into transcription factors and ME/CFS Trustees agreed to approve full funding for a research proposal that has been submitted by Professor Peter Behan, Professor Chris Hillier, Professor John Gow and Dr Abhijit Chaudhuri. The study will investigate the role of what are called transcription factors in ME/CFS. The study of transcription factors is an exciting and relatively new area of medicine and is something that is also linked in to XMRV infection – see recent paper in The Journal of Virology: http://jvi.asm.org/cgi/content/short/85/7/3179. The study will be carried out at Glasgow Caledonian University.

RRF funding: Approx £42,000 More information on this new research can be found in a website statement: https://meassociation.org.uk/?p=5392

The MEA is now in a position to fund new research in addition to current commitments and the funding that has been set aside to help set up a UK tissue and post-mortem bank. Information on the work of the RRF can be downloaded from the research section of the MEA website.

Ramsay Research Fund Grant Application Form TB reported on progress re a new electronic application form.

ME CONNECT HELPLINE

0344 576 5326

Available every day of the week between these times: 10am - 12noon, 2pm - 4pm and 7pm - 9pm.

Calls cost the same as other standard landline numbers (starting 01 or 02). If you have a call package for your landline or mobile phone then calls will normally come out of your inclusive minutes.