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Kerr pulling out of XMRV research

Discussion in 'XMRV Research and Replication Studies' started by Esther12, Mar 5, 2010.

  1. Mithriel

    Mithriel Senior Member

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    This is part of their original memo.

    Details here

    http://tinyurl.com/yg899at


    I'm not sure who ME solutions are.

    Mithriel
  2. Mithriel

    Mithriel Senior Member

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    I found this
  3. ukxmrv

    ukxmrv Senior Member

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    I've had contact with ME Solutions and have deep reservations about that organisation. Although the website looks good the person I met from ME Solutions didn't seem to have a clue about acute onset ME vs idiopathic fatigue. Not a problem or concern for everyone but one that stuck out for me.

    http://www.mesolutions.org.uk/

    There is also the involvement of Vivienne Parry

    ----------------------------------------------------------------------------

    I've also had involvement as well with the St Helier/Epsom hospital and their NK cell testing funnily enough. Their tests did not match others I had abroad. Another red flag for me.
  4. Dolphin

    Dolphin Senior Member

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    RE: Dr. Bansal

    I read a report of a talk Dr. Bansal gave last year where he summarised the IACFS/ME conference 2009. He didn't hide at all the fact that CBT studies were presented that were negative nor did he try to "spin" the findings that I could see. He could easily not have mentioned them as there was plenty of other things to talk about.

    Those job ads were 5 years ago and he might not have been involved in the wording. Apart from that, I don't recall seeing other indications that he is of the CBT School of Thought aka Wessely/White/Sharpe/Chalder School of Thought.
  5. Mithriel

    Mithriel Senior Member

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    That's good.

    It is by sharing information that we get to know what is going on, sort people out into the good and bad :Retro smile:

    Does anyone know what MEsolutions has done? It surprised me that I had never come across them before.

    Mithriel
  6. Cort

    Cort Phoenix Rising Founder

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    This sounds like an entirely new project which suggests Kerr did not pull out because he did not have samples - he pulled out because he didn't think he was going to find any XMRV based on his findings in his last study - which Invest noted. I don't what else to think.
  7. garcia

    garcia Aristocrat Extraordinaire

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    Well clearly he pulled out of the study because it was a follow-on study to initial work which failed to work. So he did the only thing he could do and gave back the money, until the issue is resolved. From my conversation with him, he is still open minded on the issue of XMRV in CFS, and was as keen as anyone else to know the answers.

    Could the title of this thread be changed please? Its just that it is misleading at present. Kerr didn't pull out of all XMRV research. He pulled out of one study. The correct title should be "Kerr pulling out of XMRV study".

    Many thanks,
    garcia.
  8. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    ME Solutions

    http://www.mesolutions.org.uk/who-we-are/

    http://www.mesolutions.org.uk/what-we-do/

    http://www.mesolutions.org.uk/research-we-support/

    Vivienne Parry (Sense About Science, Science Media Centre, Administrator GUS funding arm - GUS intitiated and funded the PRIME Project to the tune of 320K) is a Patron to ME Solutions.

    (Yes, Parry who blames the ME community for the lack of CFS and ME research.)

    Their Chief Scientific Advisor is Dr.Amolak Bansal who was Kerr's collaborator in this proposed study for which ME Solutions and Invest in ME had been engaged in fundraising.

    When this proposed study was first announced, concerns were expressed about the clinic that Dr Bansal heads up and Invest in ME issued a statement. Concerns had also been expressed about the lack of information about how much funding was required, how much might already have been raised and from what source, and what would happen to donations if the full amount required could not be met.

    I'll dig the Invest in ME statement out.

    Suzy
  9. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    Second Invest in ME notice:

    (Extracted from Invest in ME Newsletter December 09, my highlighting)

    A Chance to Help Biomedical Research into ME

    Maybe a new chief executive or a new government will bring the change in
    policies required. Maybe the XMRV research will make the MRC policies
    redundant. But we could wait forever for the MRC to acknowledge the obvious
    and for Professor Holgate to convince the MRC to fund biomedical research -
    "proper science". Or we can do what we can ourselves.

    Invest in ME have decided to work with another charity, ME Solutions, to
    begin a fund-raising campaign for research to be performed by Dr Jonathan
    Kerr and Dr Amolak Bansal of Epsom and St Helier hospital (see our press
    release detailing the research - click
    <http://www.investinme.org/IIME Biomedical Research 2009 12 01 K
    err.htm> here).

    Dr Kerr has been starved of funding from the UK Medical Research Council
    (who have used the nonsensical excuse that there have been no high-quality
    applications for biomedical research).

    Dr Kerr has been working with Dr Mikovits from WPI and they have even been
    awarded funding from USA's NIH. The fact that Dr Kerr has to look to the USA
    for funding to perform research shames the UK government and the
    establishment organisations such as the MRC.

    Invest in ME wish to help Dr. Kerr's continued work and further the research
    around XMRV and immune system dysfunction.

    We knew there would be concerns around Dr Bansal's connection with the CNCC
    clinic at the St Helier hospital. Some of the concern is understandable.
    Invest in ME have also been critical of the government's CNCC clinics as not
    being set up correctly to serve patients with myalgic encephalomyelitis. We
    were also concerned that some of the information about ME on the Epsom and
    St. Helier website was incorrect and we have suggested to Dr Bansal, via ME
    Solutions, that it be removed or corrected.


    However, the same department web site also states that - "The main research
    interests of the department include NK cells and infertility, allergy,
    immunodeficiency and the chronic fatigue syndrome." and "NK cell activation
    and cytotoxicity are routinely performed within the department of Immunology
    at St Helier Hospital."

    So Invest in ME discussed this with Dr Kerr and ME Solutions. Dr Kerr's
    respect for Dr Bansal's expertise in immunology convinced us to give our
    support to this exciting new project. Dr Kerr has already collaborated with
    Dr Bansal on ME/CFS research. It is worthwhile looking at the actual
    research proposed. The important item is the research to be performed and in
    this case we need to look to the future.

    The title of the research project is "The role of XMRV in modulation of NK
    cell cytotoxicity and NK cell gene abnormalities in ME/CFS patients"

    The research is distinct in that it will relate the presence of XMRV in NK
    cells with other CFS-associated abnormalities previously demonstrated in NK
    cells. XMRV has been cultured from T, B and NK cells, but primarily targets
    NK cells. NK cell dysfunction has previously been found to be abnormal in
    ME/CFS, despite their numbers often being largely unaffected. Defects in the
    innate immune system are thought to play a key role in the pathogenesis of
    ME/CFS and these abnormalities may leave individuals susceptible to XMRV
    infection. This study will relate the presence of XMRV in NK cells with
    ME/CFS-associated abnormalities previously demonstrated in NK cells and
    ME/CFS-associated gene abnormalities.

    The research project also proposes to select patients according to the
    Canadian criteria and the Fukuda criteria - thus standardising on the same
    criteria being used by the WPI in its research. We believe this will help in
    setting a baseline for future research. If one wishes to have research using
    patient samples diagnosed according to the Canadian Criteria then one has to
    start somewhere and we fully trust Dr Kerr in his commitment.

    For this research project Invest in ME and ME Solutions will be able to make
    joint grant applications - the reasoning being that two ME charities working
    together to fund-raise will make it a more attractive proposition for
    grant-giving bodies.

    We would expect the majority of any funding for the project to come from
    these grant applications but often a funding body wishes to see some funding
    secured separately.

    We welcome support and contributions from organisations who have funds for
    biomedical research and who wish to contribute to XMRV research. We also
    welcome support from individuals who are able and willing to support one of
    the key ME researchers in the world today.

    Invest in ME will be contributing to this project, as best we can, using our
    Biomedical Research Fund. Our interests are in getting funding for
    biomedical research into ME and for Dr Kerr to continue to perform ME
    research and cooperation with Dr Mikovits and the extraordinary WPI team.

    -------------

    First Invest in ME notice

    Funding Biomedical Research into ME

    Two charities are joining forces to fund research into ME/CFS.

    ME Solutions and Invest in ME are working together to maximise the opportunities to fund research into ME/CFS. The research project is -

    The role of XMRV in modulation of NK cell cytotoxicity and NK cell gene abnormalities in ME/CFS patients and normal blood donors

    The project will be carried out by Dr Jonathan Kerr and his team from St. George's University, London, and Dr Amolak Bansal of the Department of Immunology, Epsom & St Helier University Hospitals NHS Trust.

    Background to the project

    A newly discovered ?-retrovirus, Xenotropic Murine Leukaemia Virus - like virus (XMRV) has recently been found to be present in the blood of 68 of 101 (67%) ME/CFS patients as compared with 8 of 218 (3.7%) normal healthy controls (Lombardi et al, 2009). XMRV has been cultured from T, B and NK cells, but primarily targets NK cells. NK cell dysfunction has previously been found to be abnormal in ME/CFS, despite their numbers often being largely unaffected.

    Defects in the innate immune system are thought to play a key role in the pathogenesis of ME/CFS and these abnormalities may leave individuals susceptible to XMRV infection. This study will relate the presence of XMRV in NK cells with ME/CFS-associated abnormalities previously demonstrated in NK cells and ME/CFS-associated gene abnormalities.

    Plan of Investigation

    A sample of clinically-diagnosed (according to the Fukuda and Canadian criteria) ME/CFS patients and age-and-sex matched normal controls will be recruited. XMRV status will be determined and NK cells obtained and tested for ME/CFS-associated gene abnormalities in NK cells. XMRV status will be related to ME/CFS gene expression changes.

    Donations

    ME Solutions and Invest in ME welcome sponsorship and donations for this two year project which we hope will begin as soon as possible.

    The links below will allow online donations to be made.

    https://charities.everyclick.com/purchase?d=D&cn=Invest-in-ME&cid=275467&ctId=1114035&cy=GBP

    http://www.justgiving.com/mesolutions/donate
  10. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    But he headed up the clinic, then.

    Dr Ellen Goudsmit has been writing favourably about Dr Bansal on the ME Association's Facebook Wall, hasn't she Tom?
  11. Dx Revision Watch

    Dx Revision Watch Suzy Chapman dxrevisionwatch.com

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    I would post the comments of Dr Ellen Goudsmit (now psychology advisor to the ME Association) in connection with her own experience as a patient of Dr Bansal, but Ms Goudsmit expressly does not give permission for what she writes on the MEA's Facebook Wall and Discussion pages to be published elsewhere - so I'm afraid I cannot republish.

    ME Association Facebook Wall:

    http://www.facebook.com/group.php?v...tory_fbid=226500923256&gid=68630803256&ref=mf
  12. Dolphin

    Dolphin Senior Member

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    I heard her mention a good experience before on another list. If people have seen me interact with Ellen over the last 10 years or so, it does not work that because she says things, I agree with them. I challenged her probably more than anyone else (except maybe CB for a period - but they were for different reasons!) on IMEGA-e. I have learned a lot from her knowledge of the literature but have also disagreed with her plenty of times.

    But as I said, I was pleased with the report I saw on the meeting he gave on the IACFS/ME conference that appeared in a local group newsletter. And have seen the odd other thing that seemed reasonable although haven't seen much. If there are "bad" things he wrote himself, I will be interested to see them.

    I know that just because you are an immunologist or infectious disease doctor, doesn't mean you can't be trouble e.g. Nye.

    We don't have lots of immunologists queuing up in the UK to research the illness (certainly not before the XMRV finding). That study looked potentially interesting. Immune problems are something the CBT School rarely talk about - they can talk about some endocrine problems as due to stress, Orthostatic Intolerance as due to deconditioning, Neurological abnormalities are sometime connected with the brain/thinking and psychiatric problems (and sometimes merge them together). It is not easy to explain away proper immunological abnormalities. And immune drugs are also drugs one doesn't associate with the CBT School.

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