The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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from MEA website, XMRV and the Ramsay Research Fund

Discussion in 'XMRV Research and Replication Studies' started by flybro, Feb 27, 2010.

  1. flybro

    flybro Senior Member

    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
  2. omerbasket

    omerbasket Senior Member

    If they will continue to give the testinjg procedure to UK "experts" that would not follow the WPI's procedures step-by-step and would not consult with them - I'm arfraid they are just wasting money and that they might cause ME/CFS sufferers to keep suffer because of unreliable tests.
  3. Sasha

    Sasha Fine, thank you

    I think that is a concern that some of the UK people who are XMRV+ have already expressed on this site. I would feel the same if the only UK labs that were going to be testing my blood were the ones that had already failed to find it, but the MEA/Ramsay is talking about giving the blood to "a UK research group" who they'd presumably choose for being ready and willing to collaborate with the WPI and use their methods, to the letter. I'd assume they'd want the lab to get XMRV+ samples from the original US study to check that they could find it before being let loose on the UK blood - if they haven't said so, I'd insist on it if I were XMRV+ and approached for such a study.
  4. Min

    Min Guest

    Quite frankly I'm running out of UK charities to trust, & am desperately hoping that ME Research UK will follow the WPI's lab techniques and use the same patient group.
  5. Gerwyn

    Gerwyn Guest

    Untill we know more I would not touch this with a barge pole!
  6. Angela Kennedy

    Angela Kennedy

    Essex, UK
    What Gerwyn and Min said.

    Looking at the whole picture- and with the latest by the BMJ these past couple of days, the political situation around XMRV and CFS is dire. Good, ethical science is not assured here. We have all sorts of ad hominem, appeals to authority, refusal to countenance the scientific evidence, conflicts of interest remaining undeclared, all being carried out within the scientific community and other arenas, around this area of XMRV/CFS research.

    I would really advise XMRV positive people in the UK NOT to have themselves re-tested by any ad hoc 'project', especially in the current climate. I really think the community needs to stand back and consider their own interests as vulnerable patients here. I am not confident that due ethical consideration - true careful ethical consideration - is being given to the ME/CFS community, especially those who are seriously impaired, by many in the scientific communities . Behaviour (especially recently) by the scientists, and certain charities, and the medical press, has led me to this worrying conclusion.

    This may sound flippant - but I would ask people to consider this analogy. I've long felt like the mother of a Japanese schoolchild, trapped in the street, about to be crushed in the fight underfoot between godzilla and the other one, as they flail wildly in their self-centred dispute.

    Godzilla and the other one are the scientists by the way! In case you didn't get the reference ; )

    Humour aside, I think the analogy is apt.
  7. omerbasket

    omerbasket Senior Member

    I do think that people who tested positive for XMRV by WPI or VIPdx should approach the UK studies - and better if they do so without they anyone who is related to the UK studies know they were tested positive for XMRV. I say that, because if they would be tested negative for XMRV in the UK study, than if they want to, they can even go to the press and say: "In the USA I'm XMRV positive and here in the UK I'm XMRV negative. How is that possible?". Probably there would be people who would say that that's because the USA tests are giving false positives - and I guess there is some chance that they are right - but at least that way there would be a debate and people would be able to understand that there is a big chance that the UK tests are unreliable.

    By the way, I think that most of the ME/CFS that might participate in these studies would not even be aware of the dirty politics that perhaps exist here.

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