Lipkin's Monster ME/CFS Study: Microbes, Immunity & Big Data
The Microbe Discovery Project outlines an ambitious new study by top researchers that has collected patient samples, but needs desperately funds to complete the work.
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Changes in the CMRC executive board (incl. Peter White)

Discussion in 'General ME/CFS News' started by Scarecrow, Jun 4, 2015.

  1. Scarecrow

    Scarecrow Revolting Peasant

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    The draft minutes of the last board meeting have been circulated but are yet to be posted on AfME's website.

    There have been two resignations. The board would like to bring in a genomics expert and an MRC-funded researcher to fill the vacancies.

    The two outgoing members are Peter White and Paul Moss.
     
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  2. Sasha

    Sasha Fine, thank you

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  3. Scarecrow

    Scarecrow Revolting Peasant

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  4. Scarecrow

    Scarecrow Revolting Peasant

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    @Sasha

    The minutes are on the MEA site. I tried your link and it does work: just takes a while to open the doc.
     
  5. Sasha

    Sasha Fine, thank you

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    Oh! I didn't notice there was a doc that downloaded. I was expecting to see a webpage.

    Thanks!

    I see on MEA FB that Montoya is headlining the October conference. Good to see US researchers coming over for this. I think the IiME conference raises the bar and it's good to have two conferences a year - it's a chance for new stuff to break and to get those international collaborations going.
     
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  6. worldbackwards

    worldbackwards A unique snowflake

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    Earth


    Changes nothing I'm sure, but it's still a cheering thing.
     
    Last edited: Jun 4, 2015
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  7. Valentijn

    Valentijn WE ARE KINA

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    It's great to see Peter White hitting the road :thumbsup: Though it sounds like Paul Moss did some pretty good research.
     
  8. Sasha

    Sasha Fine, thank you

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    There's actually some very interesting stuff in the minutes overall. Well worth reading the whole thing.

    What's the Grand Challenge?
     
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  9. Scarecrow

    Scarecrow Revolting Peasant

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    If you look at the meeting minutes at the AfME link above, PDW was rarely there anyway, so no real surprise that he has gone.
    Yes, and hopefully it's that which is responsible for keeping him too busy for the CMRC.
     
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  10. Scarecrow

    Scarecrow Revolting Peasant

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    I don't recall it from the any of the previous minutes but I don't have time to look through them again at the moment.

    Did you see they are discussing a website, too? That should help with communicating CMRC activities.
     
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  11. Simon

    Simon

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    Quick undigested post from me while my brain holds out. I've been a cheerleader for the CMRC but have been frustrated by the lack of output so far in terms on new well-funded high-quality studies. These minutes seem to take the bull by the horns.

    Funding

    Wellcome Trust are one of the big three funders and haven't come to play yet.
    NIHR is the huge NHS arm of UK research funding, focusing on clinical studies, and again haven't been involved much yet. PL is Paul Little.

    Grand Challenge/establishing research priorities
    I'd understood the Grand Challenge to be an 'omics-led approach (genomics, metabalomics etc) to the illness.
    Not quite sure what this means but sounds like a start, and a call to action.

    There was another bit where they discussed identifying researchers who could be involved (in 'omics work?), a kind of scoping study - as well as what priorities should be.
    added:
    See also this on patient/public involvement:
    and this
    I assume that's writing to all the MRC funding boards to ask for cash, which could potentially be big.

    Bit short of detail here, but seems we mmay have tantalising glimpses of action

    Outta gas. More later, maybe.
     
    Last edited: Jun 4, 2015
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  12. Scarecrow

    Scarecrow Revolting Peasant

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    I think Paul Little is still on board, unless he has resigned since the last meeting. It is Paul Moss who has resigned. (Too many Pauls.)
     
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  13. Sasha

    Sasha Fine, thank you

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    Yes, that will be a big help - at the moment you have to go googling for bits and pieces about them which are splattered all over.
     
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  14. aimossy

    aimossy Senior Member

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    Would they fund a NZ researcher in genomics, proteomics, metabolomics? We have one fighting for funding in ME/CFS who is seriously top notch. Prof Warren Tate. Google him. Too tired to say more. Otago University.
     
  15. Sasha

    Sasha Fine, thank you

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    Thanks @Simon - very useful to have your interpretation.

    The James Lind Alliance are very interesting and I've long thought they could play an important role for us:

     
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  16. Scarecrow

    Scarecrow Revolting Peasant

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    The CMRC is for UK-based practitioners only. :(

    Also they don't actually award research funds but one of their aims is to help researchers to access funds by improving the quality of applications.
     
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  17. aimossy

    aimossy Senior Member

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    whats the point being in a commonwealth. Maybe we should change our flag after all :)
     
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  18. John Mac

    John Mac Senior Member

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    Don't do that yet, if the UK pulls out of the EU we might need you
     
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  19. Simon

    Simon

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    Step forward the Rituximab trials, both the large multi-clinic Norwegian study and maybe even more the UK IiME-funded studies that focus on trying to identify who responds and why by getting up close and perrsonal with B-cell biology.
     
    Last edited: Jun 4, 2015
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  20. aimossy

    aimossy Senior Member

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    As well as some of these new drugs that are possibly showing symptom relief that fluge and mella are looking into?
     
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