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DecodeME - UK ME/CFS DNA study underway

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

  1. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Yes, we don't want to confuse people!
     
    Kitty, Trish and Andy like this.
  2. ringding

    ringding Senior Member (Voting Rights)

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    It's going off topic a bit but I wonder how much it'd cost to get some professional photos taken that truly represent ME for sending out with press releases. The photos are often what draw people to articles, it could be money well spent in awareness raising.
     
    Woolie, janice, Kitty and 14 others like this.
  3. Trish

    Trish Moderator Staff Member

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    Thanks @Simon M for your valuable role in this and for your excellent article.
    Thanks Sonya Chowdhury for all your efforts on this, and to your son for being interviewed for the Times article.
    Thanks Luis Nacul, Eliana Lacerda, Caroline Kingdon and the rest of the Cure ME biobank team.
    Thanks Nina Muirhead for the excellent interview.
    Thanks again Chris Ponting and Andy.
    And thanks to anyone else involved.

    You are all amazing.
     
  4. Trish

    Trish Moderator Staff Member

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    I think the Decode ME research team could ask the ME Association to supply them with photos they have already collected to send out with any future press releases.
     
  5. Londinium

    Londinium Senior Member (Voting Rights)

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    Desktop, Windows 10, Firefox 77.0.1. Do you receive a confirmatory email after registering? I haven't received one but don't know if that's a sign I didn't register properly or whether no such emails are sent.
     
    Kitty, Simon M, MEMarge and 1 other person like this.
  6. Amw66

    Amw66 Senior Member (Voting Rights)

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    What a brilliant bit of news to wake up to! Amazingly well done to all those involved.
    I have shared link as widely as I can- it would be great to hit the 20,000 mark within a few months if we can.

    I know people have already signed up this morning on the back of the press coverage - we need to try and ensure we can get more coverage after a few months to keep it in news.
     
  7. Michiel Tack

    Michiel Tack Senior Member (Voting Rights)

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  8. Andy

    Andy Committee Member & Outreach

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    Thanks, I've passed the information on. I don't believe that a confirmation email is sent, if I'm wrong then I'll let you know.
     
    Robert 1973, Kitty, Barry and 4 others like this.
  9. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    No, I don't think one is sent. Would have been a good idea. However, making that change now might cause more confusion.
     
  10. Sasha

    Sasha Senior Member (Voting Rights)

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    On the old mebiomed site, it said: 'We do not yet have funding in place and are temporarily using SurveyMonkey so that you can register your interest. Please note that you will not receive a confirmation email when you register.'

    If it's possible to send out a confirmation email via the new site, I think it should be done - people expect one. I don't think it will be confusing - people who haven't signed up via the old site won't be aware of the old practice.
     
    Kitty, Simon M, Andy and 2 others like this.
  11. Trish

    Trish Moderator Staff Member

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    If you signed up on the old site, do you need to sign up again on the new site?
     
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  12. Andy

    Andy Committee Member & Outreach

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    Interview starts at the 12:20 time stamp.
     
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  13. Andy

    Andy Committee Member & Outreach

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    No, but it won't hurt if you did it again. Once recruitment opens, even if people have signed up for the updates, they will need to sign up "properly".
     
    Kitty, Barry, MeSci and 8 others like this.
  14. Trish

    Trish Moderator Staff Member

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    Woolie, janice, Kitty and 6 others like this.
  15. Sasha

    Sasha Senior Member (Voting Rights)

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    But doesn't that just mean that we'll get an email via signing up to the old site asking us to do that at a later date?
     
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  16. Grigor

    Grigor Senior Member (Voting Rights)

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    Wow. Really amazing! Thank you so much to everyone involved for making this happen.

    Besides the image in the Guardian and the Whipple bit in the Times we saw some pretty good coverage.

    Times are changing! Good job! :thumbup:
     
  17. Caesar

    Caesar Senior Member (Voting Rights)

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    Thanks a lot to everyone involved.
    This is fantastic news for all ME / CFS patients. This gives motivation and hope.
    Thank you again.
     
    MarcNotMark, EzzieD, janice and 14 others like this.
  18. Andy

    Andy Committee Member & Outreach

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    That assumes that a. we wouldn't email both lists at the same time, and b. that we wouldn't clean the lists by removing obvious duplicates. I don't know, at this stage whether we will or won't do those things, but they seem, hopefully, to be obvious and sensible things to do. But, on balance, I think I would still prefer to send people two emails asking them to do the same thing rather than risk not sending them any at all.
     
  19. Andy

    Andy Committee Member & Outreach

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  20. Barry

    Barry Senior Member (Voting Rights)

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    In which case, very sincere thanks @Action for M.E.
     
    Woolie, andypants, EzzieD and 16 others like this.

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