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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. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    That does not look right but maybe I am not understanding and maybe it is irrelevant.
     
  2. Andy

    Andy Committee Member

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    No, you're correct. I'm only out by a couple of decimal places, which is nothing between friends, right?? I'll edit my post accordingly.
     
  3. TiredSam

    TiredSam Committee Member

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    It's not an important point.
     
    MEMarge, Invisible Woman and Andy like this.
  4. Andy

    Andy Committee Member

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  5. Andy

    Andy Committee Member

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    Science behind DecodeME uncovers potential Covid-19 treatments
    https://www.decodeme.org.uk/science-behind-decodeme-uncovers-potential-covid-19-treatments/
     
    Gecko, MEMarge, MSEsperanza and 17 others like this.
  6. Andy

    Andy Committee Member

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    Email update.

     
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  7. Kitty

    Kitty Senior Member (Voting Rights)

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    I read through the FAQ on the website this morning, which says it might possibly be delayed slightly due to the change in lead centre on recruitment.
     
  8. Sasha

    Sasha Senior Member (Voting Rights)

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    @Andy - did you want to create a calendar entry / new thread for the webinar that's on today?
     
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  9. Andy

    Andy Committee Member

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    Honestly, no, I didn't intend to. I am tempted to create a new thread for the study, focusing on updates, perhaps I'll do that for next year.
     
  10. Sasha

    Sasha Senior Member (Voting Rights)

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    Fair enough - just a bit concerned that people might not realise there's a Q&A on today.
     
    MEMarge and Kitty like this.
  11. Tia

    Tia Senior Member (Voting Rights)

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    @Andy these Q&As are really helpful - thank you.
     
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  12. Andy

    Andy Committee Member

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    Thanks Tia, always nice to get feedback. :)

    Should be available to rewatch now via Facebook at the link below. It will also be uploaded to the DecodeME YouTube channel soon, https://www.youtube.com/channel/UCcZO9TwFK7dSJUruzYqJj9A
    Code:
    https://www.facebook.com/decodeMEstudy/videos/399977841104754/
     
    Gecko, hinterland, Fizzlou and 11 others like this.
  13. John Mac

    John Mac Senior Member (Voting Rights)

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    Solve M.E. has announced their involvement in the DecodeME study
    https://solvecfs.org/you-me-has-joined-the-worlds-biggest-study-of-me-cfs/
     
    Last edited: Dec 17, 2020
    Gecko, EzzieD, Michelle and 8 others like this.
  14. rvallee

    rvallee Senior Member (Voting Rights)

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    Lots of good could come out of this. I often see people requesting about tracking apps and usually the complaints are that it's nice and everything but people don't want to track stuff just to track stuff, they want it to be used for research, or at the very least to count things, to make it meaningful.

    I've never really done this journal thing. It's obvious that nobody cares about it, you can be super rigorous about it, tracking for months with annotations and at best a GP will give it 10 seconds of eyeball time, most of it rolling up.

    The point isn't to be busy. The point is for relevant data to become relevant information, then turned into useful knowledge. This app is the right thing for the moment, it sure would be great if some big powerful research institutions found such things interesting. Or we can just do it ourselves I guess that's another way of doing things when the people whose job it is to solve those problems badly do not want to even try.
     
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  15. Andy

    Andy Committee Member

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    From the FAQs, https://www.decodeme.org.uk/faqs/#latest-updates
     
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  16. Andy

    Andy Committee Member

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  17. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Administration Manager
    https://elxw.fa.em3.oraclecloud.com...en/sites/CX_1001/job/168/?utm_medium=jobshare
     
  18. Andy

    Andy Committee Member

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  19. MEMarge

    MEMarge Senior Member (Voting Rights)

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    I thought the webinar came across really well.

    Very positive about involvement with Solve.
     
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  20. Andy

    Andy Committee Member

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    ahimsa, Amw66, cfsandmore and 5 others like this.
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