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DecodeME - UK ME/CFS DNA study underway

Discussion in 'BioMedical ME/CFS News' started by NelliePledge, Jun 23, 2020.

  1. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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  2. Andy

    Andy Committee Member & Outreach

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  3. Andy

    Andy Committee Member & Outreach

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    DecodeME email and website update.

    Email
    Screenshot 2020-08-26 at 14.39.54.png

    Website update, which expands on the above, https://www.decodeme.org.uk/funding-announcement-gets-a-big-response/

    If you are signed up and haven't seen the email by tomorrow, please check your spam folder. If it's not there, I'd suggest that the best next option would be to try to sign up again. Finally, if you haven't received it and can't sign up again, let me know below - we may not be able to solve individual problems but it's useful for us to know.

    Remember, once recruitment opens we will need everybody to sign up seperately to that, so you won't miss out in the chance to take part even if you don't get these updates sent to you.

     
    Last edited: Aug 26, 2020
  4. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Not sure why media link not working but it says today is the start of DecodeME funding as it’s 1 September!

     
  5. Andy

    Andy Committee Member & Outreach

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  6. Kitty

    Kitty Senior Member (Voting Rights)

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    Excellent news! Hopefully there'll be more once it's being recruited through GPs, as some people aren't big users of social media, some may hesitate until they see that the study is being promoted via trusted NHS practitioners, and some may prefer to receive the information in their own languages (which primary care clinics are often reasonably good at doing).
     
  7. Andy

    Andy Committee Member & Outreach

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  8. Andy

    Andy Committee Member & Outreach

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    For all of those who have signed up to the DecodeME contact list, an email has been sent out by the communications team about future updates from the DecodeME team. It contains a link to a short (5 question) Surveymonkey survey.

    If you haven't seen this in your inbox, please check your junk/spam folder. If you still can't find it then the next easiest troubleshooting step would be to try signing-up again at the bottom of https://www.decodeme.org.uk/ to make sure that you are in the system.
     
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  9. Barry

    Barry Senior Member (Voting Rights)

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    Already sorted.
     
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  10. Trish

    Trish Moderator Staff Member

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    I didn't get the email, despite registering and receiving previous ones. I have just re-registed. It said 'thanks for registering', which suggests to me I had somehow fallen off the list.
    My daughter hasn't received it either.

    Edit: I then immediately received 2 identical emails thanking me for registering, but no email yet inviting me to do the survey.
     
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  11. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Was the survey email only sent out to people in the UK? I got this yesterday, but no message about a survey:
     
  12. MeSci

    MeSci Senior Member (Voting Rights)

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    Same here.
     
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  13. Trish

    Trish Moderator Staff Member

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    Maybe the emails are being sent out in batches, and not all have been sent yet. Any information on this, @Andy?
     
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  14. Andy

    Andy Committee Member & Outreach

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    I'm waiting on feedback from the comms team on the points raised by Trish and Dolphin. I'll come back when I know something more.
     
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  15. Andy

    Andy Committee Member & Outreach

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    I'm yet to get a reply to my enquiries but in the meantime these have been posted.
    Code:
    https://twitter.com/DecodeMEstudy/status/1312033391609556997


    Code:
    https://www.facebook.com/decodeMEstudy/photos/a.144895943633950/221221226001421/
     
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  16. JemPD

    JemPD Senior Member (Voting Rights)

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    just to say I had the email with the survey link, i think it was yesterday but it could have been wednesday
     
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  17. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

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    Me too.
     
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  18. Sasha

    Sasha Senior Member (Voting Rights)

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    I've received no email.
     
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  19. Milo

    Milo Senior Member (Voting Rights)

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    I deleted my previous post. I received the following message yesterday, but no link to survey. Could it be because i am out of country? Edit: from post above, yes, because i am not from UK. It may be necessary to mention UK residents only.




    Thanks again for signing up to receive updates on the DecodeME study. It’s great to have you onboard. The project is now officially underway and we are doing the necessary work so that we can recruit people into the study from next spring.

    As we said before, we are aiming to recruit all participants from the UK, but will recruit internationally if necessary. We will continue to keep you posted with developments and will share more news when we have it by social media, blogs and e-newsletters. In the meantime, we thought you would like to know that we have formally started on the journey.

    Best wishes,
    The DecodeME team
     
    Last edited: Oct 2, 2020
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  20. MeSci

    MeSci Senior Member (Voting Rights)

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    I've had the same message, I think (haven't checked) and I am definitely in the UK! No link to survey.
     
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