Closed UK: DecodeME updates, was recruitment thread.

Hoopoe said:
How long will it take for publication of the first findings?
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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.
 
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".
 
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)
 
@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.
 
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/
 
JemPD said:
@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?
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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.

JemPD said:
Wondering how we can help encourage people?
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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.
 
Andy said:
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"
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The recording of the webinar can be watched on Facebook here,
Code: 
https://www.facebook.com/decodeMEstudy/videos/795507245717308
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Transcript will follow in due course, as will it being available on YouTube.
 
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@
 
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