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Closed UK: DecodeME updates, was recruitment thread.

Discussion in 'Recruitment into current ME/CFS research studies' started by Andy, Sep 12, 2022.

  1. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    How long will it take for publication of the first findings?
     
  2. Andy

    Andy Committee Member

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    Location:
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    As soon as is possible, and as long as is needed.

    And I appreciate that is an unhelpful answer but we need
    • everybody who is sent a spit kit to return it,
    • the saliva to be extracted and readied for DNA extraction,
    • the prepared samples to be shipped to Denmark,
    • the DNA to be extracted from the saliva,
    • the DNA data to be analysed,
    • the findings to be written up,
    • the findings published (probably as a preprint first).
    So I'm sure that you will understand why, with so many 'moving parts', we don't want to commit ourselves to any dates that we then might not meet.
     
    EndME, sebaaa, Robert 1973 and 18 others like this.
  3. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    Congratulations and thank you @Andy, @Chris Ponting and colleagues. As I have noted previously I'm sad I couldn't contribute my/my family's genes at this stage of the project but I suspect you will have enough material. Of course there may be no findings ultimately but I'm strongly inclined to think there will. From my personal perspective, along my maternal line we have affected family members a century apart and living on opposite sides of the globe. Separated in time and space, but sharing genes. Maybe a fluke, but I doubt it. I look forward to "sometime next year".
     
  4. RedFox

    RedFox Senior Member (Voting Rights)

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    I will be very happy if results are published by the end of 2024. I expect positive results, they studied around 20,000 people after all.
     
  5. Andy

    Andy Committee Member

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    "A HUGE thank you to the more than 26,000 people who completed the questionnaire and over 21,000 people invited to provide DNA (receipt of samples closes on 31 January 2024). We believe we will be able to run a high quality analysis on this size of cohort."

     
  6. Dolphin

    Dolphin Senior Member (Voting Rights)

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    5,068
    DecodeME:

    "We currently have around 4,000 spit kits that have been sent out and not yet returned."
     
  7. chillier

    chillier Senior Member (Voting Rights)

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    187
    Really Brilliant thankyou for all of your hard work on this so far! Based on the 85% return rate sounds like we're headed for somewhere between 17000 and 18000 returned samples, hopefully the higher end of that range. Still hoping for even more. (0.85 x 21000 = 17850)
     
  8. Trish

    Trish Moderator Staff Member

    Messages:
    52,193
    Location:
    UK
    @Andy please can you clarify whether spit kits have to be posted by 31st January, or received at their destination address by that date.
    The tweet in the post above says they have to be received by that date, but also says 'return by' which is, to me, ambiguous.
     
    Peter Trewhitt, Ash, JemPD and 2 others like this.
  9. Andy

    Andy Committee Member

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    Posted.
     
    bobbler, Peter Trewhitt, Ash and 2 others like this.
  10. Trish

    Trish Moderator Staff Member

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    Location:
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    Ta, I've probably asked you three times already. Brain so full it's overflowing.
     
  11. Amw66

    Amw66 Senior Member (Voting Rights)

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  12. Andy

    Andy Committee Member

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    Chris Ponting talked about DecodeME and genetic investigation of ME/CFS in a recent NIH webinar on genetics. His talk runs from 11:57 - 49:35 in the video linked below.

     
    Ariel, JemPD, sebaaa and 11 others like this.
  13. Fizzlou

    Fizzlou Senior Member (Voting Rights)

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    Location:
    Cheshire
    This was an excellent presentation and an effective appeal to replicate in a US cohort.
    Really worth watching even if you have watched Chris before. The Q&A was also useful.
     
    Ariel, RedFox, Amw66 and 6 others like this.
  14. Andy

    Andy Committee Member

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    Coming soon – DecodeME’s Second Questionnaire

    We wanted to give you a quick heads-up on our plans for a second questionnaire.

    We would like to thank all participants for their amazing help to date and to ask for their continuing support with this additional activity.
    • All existing participants, who have already completed the first questionnaire, will shortly be invited to complete a second questionnaire
    • This second questionnaire is designed to give scientists more detailed information on ME/CFS
    • Completing this second questionnaire is completely optional, but your answers will help us understand more about ME/CFS.
    • Participants who completed a paper copy of the first questionnaire will be sent a paper copy of the second questionnaire along with their invitation to participate
    • To give people who are completing a paper copy a little extra time, we will send the paper copies out in December and they should be posted back to us by 15 February 2024
    • Invitations to complete the second questionnaire online will be send to all other participants at the beginning of January. You will have until the 29 February 2024 at 5pm to complete the online version of the second questionnaire
    More at https://www.decodeme.org.uk/second-questionnaire/
     
    Lou B Lou, ahimsa, Ariel and 13 others like this.
  15. JemPD

    JemPD Senior Member (Voting Rights)

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    Sounds good :)

    @Andy just wondering if we have any indication how the “spit kit” returns are going? Last I heard there were about 4K still out there unreturned?

    Wondering how we can help encourage people?
     
    RedFox, Ariel, Peter Trewhitt and 4 others like this.
  16. Andy

    Andy Committee Member

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    We haven't publicly announced an update - while we are seeing a steady stream come back to us there is still the best part of that 4k yet to be returned.

    Sharing our social media posts, where possible, may get repetitive but it's broadly speaking the only tool we have at this stage. We are limited with the number of emails that we are able to send out to our participants, so we can't spam the inboxes of those who are yet to return their kits even if we wanted to - and I think that would largely be a counter-productive strategy anyway.
     
    MeSci, RedFox, Robert 1973 and 6 others like this.
  17. Amw66

    Amw66 Senior Member (Voting Rights)

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    Spitkits are still being posted out .
    My daughter has just been notified hers is on its way
     
    sebaaa, Nellie, MeSci and 7 others like this.
  18. Andy

    Andy Committee Member

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    From DecodeME social media channels.

    "Join us for our #DecodeME December Webinar next Thursday for project updates, 2nd questionnaire info and ‘what is happening to your data?’. Email contact@decodeme.org.uk with any questions you have for Sonya, Chris and Andy. To sign up: https://shorturl.at/bR278"
     
    Amw66, RedFox, Dolphin and 2 others like this.
  19. Andy

    Andy Committee Member

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    The recording of the webinar can be watched on Facebook here,
    Code:
    https://www.facebook.com/decodeMEstudy/videos/795507245717308
    Transcript will follow in due course, as will it being available on YouTube.
     
    Amw66, ahimsa, Robert 1973 and 5 others like this.
  20. Trish

    Trish Moderator Staff Member

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    Location:
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    Big thanks to Andy, Chris and Sonya for an excellent webinar. It's the first one I've managed to watch for quite a while from the team and as ever I'm impressed by the thoughtful, professional and patient-friendly way the whole project is being run. :trophy@
     
    ahimsa, EzzieD, Robert 1973 and 6 others like this.

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