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DecodeME Q&A webinar, 4pm Monday 6 July

Discussion in 'ME/CFS research' started by Sasha, Jun 23, 2020.

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  1. Sasha

    Sasha Senior Member (Voting Rights)

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    The amazing DecodeME ME/CFS DNA project that just got funded, is holding a webinar on 6 July.

    Details to be announced later, presumably - this info is from emails that went out to people who registered for updates about the study.
     
    Sasha, Jun 23, 2020
    #1
    MSEsperanza, Kitty, ahimsa and 12 others like this.
  2. Sasha

    Sasha Senior Member (Voting Rights)

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    Sasha, Jul 5, 2020
    #2
    Simon M, ahimsa and Kitty like this.
  3. Sasha

    Sasha Senior Member (Voting Rights)

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    I registered for the above and got this email in reply:

    @Andy, how can people who aren't registered with FB submit a question?

    Do I understand from the above that it will be both on Zoom and FB at the same time?
     
    Sasha, Jul 5, 2020
    #3
    Simon M, Andy, Kitty and 1 other person like this.
  4. Andy

    Andy Committee Member

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    Yes, I believe so. This isn't the only one that we plan to do, so if you don't get your question answered, or it's not answered later in the FAQ on the website, then there will be other opportunities. As of Friday, we had 1400 people registering for this, so we won't be able to get to everybodies question tomorrow.
     
    Andy, Jul 5, 2020
    #4
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  5. Andy

    Andy Committee Member

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    Andy, Jul 6, 2020
    #5
    Amw66, Binkie4, Simon M and 3 others like this.
  6. Andy

    Andy Committee Member

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    Facebook Live link (no Facebook account needed).
    Code:
    https://www.facebook.com/decodeMEstudy/videos/738883713564071/
     
    Andy, Jul 6, 2020
    #6
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  7. NelliePledge

    NelliePledge Moderator Staff Member

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    thanks for updates @Andy my Brain not in gear at the moment so I’ve cancelled my booking so appreciate the opportunity to catch up later.

    The question I wanted to ask is about recruitment. Some areas don’t have local ME charities or Facebook support groups. I would be happy to try to publicise the study in my area but it is a big challenge for an individual person with ME is there any help available from AFME/MEA in contacting local press, local organisations/charities?
     
    NelliePledge, Jul 6, 2020
    #7
    MSEsperanza, Kitty, Simon M and 3 others like this.
  8. Sasha

    Sasha Senior Member (Voting Rights)

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    Well done, @Andy! Great job there. I hope it hasn't tired you out too much.
     
    Sasha, Jul 6, 2020
    #8
    MSEsperanza, Gecko, Kitty and 5 others like this.
  9. Binkie4

    Binkie4 Senior Member (Voting Rights)

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    Thanks @Andy. We are spreading the word as requested.

    Looking forward to what emerges already. Keep well.

    edited: first sentence
     
    Last edited: Jul 6, 2020
    Binkie4, Jul 6, 2020
    #9
    MSEsperanza, Simon M, Kitty and 3 others like this.
  10. Andy

    Andy Committee Member

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    While we are working on the details we will be looking to enable and help patients advertise the study, so watch this space, essentially.
     
    Andy, Jul 6, 2020
    #10
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  11. InitialConditions

    InitialConditions Senior Member (Voting Rights)

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    Hi @Andy Good work today. After tuning into the webinar today, I have one suggestion: A prominent timeline or progress chart on the website would really help. Something that clearly shows what stage we are at. People are asking about the questionnaire, whether they've missed the application deadline etc.
     
    InitialConditions, Jul 6, 2020
    #11
    MSEsperanza, Gecko, Amw66 and 7 others like this.
  12. Andy

    Andy Committee Member

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    If you missed this, or didn't want to watch it live, then this link can be used to watch on demand. It's also now been edited so that the video starts at the start of the Q&A.
     
    Andy, Jul 7, 2020
    #12
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  13. Andy

    Andy Committee Member

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    Thanks, I'll pass the suggestion on.
     
    Andy, Jul 7, 2020
    #13
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  14. Kitty

    Kitty Senior Member (Voting Rights)

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    Just to say a belated thanks to @Andy and the rest of the team for the presentation yesterday. It was so good for people to be able to put faces to the names, and see a team genuinely engaging with patients.
     
    Kitty, Jul 7, 2020
    #14
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  15. Andy

    Andy Committee Member

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    Andy, Jul 13, 2020
    #15
    Amw66, Wonko, Sasha and 7 others like this.
  16. NelliePledge

    NelliePledge Moderator Staff Member

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    Thanks for getting it broken up - great idea will take a look
     
    NelliePledge, Jul 13, 2020
    #16
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  17. Sasha

    Sasha Senior Member (Voting Rights)

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    Very impressed at all these patient-centred aspects of DecodeME!
     
    Sasha, Jul 13, 2020
    #17
    rvallee, Andy, Simon M and 1 other person like this.

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