Closed UK: DecodeME updates, was recruitment thread.

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

  1. It's M.E. Linda

    It's M.E. Linda Senior Member (Voting Rights)

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    Many thanks for your response @Andy I asked both members to use the “contact us” details to check their applications with the team.
     
    Peter Trewhitt and Andy like this.
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Hutan, MeSci, Peter Trewhitt and 2 others like this.
  3. Andy

    Andy Committee Member

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    Do you know if they have completed our questionnaire? If they have, and they received the notification that they have not been selected for the DNA stage then this will not change. We do not reveal the reason why individuals aren't selected, although we will confirm the selection criteria when we publish the results, but I can confirm that age isn't part of it (other than needing to be older than 16yo).
     
  4. Andy

    Andy Committee Member

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    On all DecodeME socials, "Did your cat eat it?"

    Click to expand
    Screenshot 2023-11-06 at 17.11.02.png
     
    Hutan, MEMarge, Amw66 and 10 others like this.
  5. Andy

    Andy Committee Member

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    Update on access to the DecodeME questionnaire next week, posted on all our social channels.

    "Our supplier has told us that essential maintenance work will occur on 14 November between 7.30pm and 10.30pm. This is outside of our control. You will not be able to access the DecodeME questionnaire during this time. Many apologies for any inconvenience."
     
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  6. Kitty

    Kitty Senior Member (Voting Rights)

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    I made a rare foray onto Facebook the other days, and saw five ads for DecodeME (three from the project team, two that others had shared). The last push seems to be working well.

    I also shared them, of course, but as I almost never post anything except occasional replies to other people's posts, I'm not sure if many people see them.
     
    MEMarge, RedFox, Binkie4 and 8 others like this.
  7. Ariel

    Ariel Senior Member (Voting Rights)

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    I had to redo my sample as it had not been extracted properly apparently. But i sent it off a while ago and it was received. Should I be worried that I never got a further correspondence saying it was okay and has been extracted successfully? Sorry if this is the wrong thread. Thanks in advance if anyone knows. A xx
     
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  8. Andy

    Andy Committee Member

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    Thanks for taking part, and for giving two samples. Obviously the important part is that you received confirmation that your second sample was received at the UK Biosample Centre. The extraction process there isn't running as quickly as we would like but it is running, so I am confident that you will receive confirmation of extraction in time. However, if you would like to, you can double check with our team by sending an email to info@decodeme.org.uk and ask them to double check the status of your sample.
     
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  9. Andy

    Andy Committee Member

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    Recruitment closes this week, Weds 15th at 5pm.
    • If you haven't taken part yet, you have until then to complete the questionnaire at www.decodeme.org.uk/portal/.
    • If you are a participant and were asked for a DNA sample, but have lost your sample kit then you have until then to request a new kit to be sent to you. Email the team at info@decodeme.org.uk.
    • If you were asked for a DNA sample and are yet to send it back, you have until 31st Jan to do so, but we recommend before then if possible to take into account the festive season.
     
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  10. Andy

    Andy Committee Member

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    Reminder, today is the last opportunity to take part if you haven't already.
     
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  11. Andy

    Andy Committee Member

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    Some people on social media are reporting that they are still seeing a message that our website is down for maintenance.

    We can confirm that this is not the case, what you are being shown is the old version of the website (for technical reasons your browser is trying to be helpful by not loading the current site).

    Forcing your browser to reload the website should fix this - on a computer hold down shift and press R (cmd+R on a Mac), on a mobile use your browser reload function (often accessed through the three dots option somewhere on your browser) when you are viewing the page. You can also clear your browsers cache or use another browser or device.
     
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  12. Andy

    Andy Committee Member

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    And recruitment is now closed! Thank you so much to everyone who took part, and also to everyone who shared details of the study, helping us to reach as many people as possible.
     
    Hutan, Ariel, MeSci and 26 others like this.
  13. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Thanks to the DecodeME team, particularly all the volunteers :thumbup:
     
    Hutan, Ariel, MeSci and 15 others like this.
  14. JemPD

    JemPD Senior Member (Voting Rights)

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    Wow, a memorable occasion. Thank you to all the amazing team, and to everyone who's taken part.

    Am itching to find out what the total number of participent ended up being. I imagine we wont know that until after all the spit kits are returned at end of Jan.

    I do worry we wont have enough, heres hoping :)
     
    Ariel, MeSci, Ebb Tide and 15 others like this.
  15. Trish

    Trish Moderator Staff Member

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    @Andy, you and the team have done a fantastic job of providing a well run huge project and making it as accessible and straightforward as possible for people of all severities to participate in. Whatever the final outcome, you can all be very proud of your achievement. Thank you.
    :trophy@:trophy@:trophy@
     
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  16. JemPD

    JemPD Senior Member (Voting Rights)

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    Yes its incrdible how easy and well thought out it was to participate, & how patient voices were really listened to in the design & all the way through. A fantastic job, especially given the size/numbers.

    :emoji_clap::emoji_clap::emoji_clap::emoji_clap::emoji_trophy::emoji_dart:
     
    EndME, Tia, Hutan and 17 others like this.
  17. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Well done @Andy in keeping us so well informed. Thank you.
     
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  18. Midnattsol

    Midnattsol Moderator Staff Member

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    Agree with the others :thumbup:
     
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  19. NelliePledge

    NelliePledge Moderator Staff Member

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    EndME, Tia, Hutan and 8 others like this.
  20. Ash

    Ash Senior Member (Voting Rights)

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    @Andy congratulations on your team project inspirational!
     
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