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DecodeME - UK ME/CFS DNA study underway

Discussion in 'ME/CFS research news' started by NelliePledge, Jun 23, 2020.

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  1. NelliePledge

    NelliePledge Moderator Staff Member

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    Ok not as helpful as when a comment is added and you can retweet that but good her followers may have seen.
     
    MEMarge, Legend, Trish and 2 others like this.
  2. Sasha

    Sasha Senior Member (Voting Rights)

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    Sorry - Miranda retweeted it but I can't see how to pick that up.
     
  3. Andy

    Andy Committee Member

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    Amw66, MeSci, Sean and 7 others like this.
  4. Andy

    Andy Committee Member

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    Code:
    https://www.facebook.com/decodeMEstudy/posts/196765338447010
     
    Amw66, Woolie, Milo and 5 others like this.
  5. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    @Andy, if you join the zoom meeting, do you have to introduce yourself or talk or have your video on? Can I join and then just listen in without speaking / participating / turning my video on?
     
    Sarah94, Barry, MEMarge and 3 others like this.
  6. Andy

    Andy Committee Member

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    No, I don't think so.

    Yes, I think so.

    As I understand it, we will have somebody helping us out, collecting live questions from Zoom's chat function. In case everybody just wants to see us live and has no questions, we've collated a number of questions that have cropped up since the funding announcement.
     
    Barry, MEMarge, Trish and 3 others like this.
  7. Andy

    Andy Committee Member

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    Hutan, Amw66, Cheesus and 14 others like this.
  8. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Hutan, MeSci, Sarah94 and 4 others like this.
  9. Kitty

    Kitty Senior Member (Voting Rights)

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    It's great that numbers have gone up so quickly. I saw a Facebook survey from the MEA earlier, asking whether people had signed up – quit a few were saying they hadn't yet, but planned to do so.
     
    MeSci, MEMarge, Trish and 5 others like this.
  10. Andy

    Andy Committee Member

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    Yep :)
     
    Hutan, MeSci, Sarah94 and 10 others like this.
  11. Sasha

    Sasha Senior Member (Voting Rights)

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    @Andy, is it possible to set things up so that, by default, people's videos and mics are off? Otherwise, people watching in their jimjams might get some unfortunate exposure...
     
    MeSci, Cheesus, Sarah94 and 5 others like this.
  12. Sasha

    Sasha Senior Member (Voting Rights)

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    I have a piece of card taped over my laptop camera so that I'm never accidentally visible! :)
     
    mango, MeSci, Sean and 8 others like this.
  13. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    Ah, so not 10000 in a few days. That was hard to believe! Still great interest and enthusiasm.

    Do you have information on what percentage meets the entry criteria?
     
  14. Andy

    Andy Committee Member

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    I would hope that will be the case.
     
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  15. Andy

    Andy Committee Member

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    No, because actual recruitment into the study doesn't start until March next year.
     
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  16. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    That’s amazing!! :blush:
     
    MeSci, MEMarge, Kitty and 2 others like this.
  17. NelliePledge

    NelliePledge Moderator Staff Member

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    14k plus in a week is pretty damn good
     
    Hutan, Tia, Gecko and 11 others like this.
  18. rvallee

    rvallee Senior Member (Voting Rights)

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    A good practice that everyone should follow. Unplug if possible, obstruct if not.

    Computer security is.... not exactly great.
     
    Amw66, MeSci, Invisible Woman and 3 others like this.
  19. Kalliope

    Kalliope Senior Member (Voting Rights)

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    Hutan, Tia, Amw66 and 17 others like this.
  20. boolybooly

    boolybooly Senior Member (Voting Rights)

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    I hope that a large data set will overcome the obstacles that obstructed Dr Kerr and his gene expression experiments since he had only about 50 patients and the computer analysis was unable to find predictive patterns of gene expression.

    This experiment should avoid the problems of changes in patterns of gene expression over time in individuals, which may have obscured the gene expression studies but it will still have to contend with multiple subtypes. So I hope the data analysis will be up to the task. :) Good luck.
     
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