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DecodeME - UK ME/CFS DNA study underway

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

  1. Sasha

    Sasha Senior Member (Voting Rights)

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    I'm confused. Surely the point of getting those early sign-ups was so that they'd be permanently on the mailing database (unless they asked to be removed)? Why would they have to sign up a second time?
     
    lunarainbows and Andy like this.
  2. Barry

    Barry Senior Member (Voting Rights)

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    Might this also have a tangential influence on the NICE guideline review? Such a clear signal of significant investment into biomedical research surely must make it a bit more difficult to plump for the BPS approach?
     
    EzzieD, janice, Kitty and 9 others like this.
  3. Sasha

    Sasha Senior Member (Voting Rights)

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    Numbers going up!

     
    Woolie, MarcNotMark, Amw66 and 21 others like this.
  4. Perrier

    Perrier Senior Member (Voting Rights)

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    My impression from the website is that the researchers are interested initially in folks from the UK. Is this correct?

    ( Also, here in Canada a large majority of the population does have UK ancestry: England, Scotland, Wales, Ireland. Some people are of mixed UK ancestry and other European nations. In Quebec it is French ancestry, of course. ) Not sure what folks from elsewhere are to do regarding participation.
     
    andypants, Kitty, Hutan and 6 others like this.
  5. Aslaug

    Aslaug Senior Member (Voting Rights)

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    This makes me happy :) Well done everyone involved!
     
    Amw66, andypants, janice and 16 others like this.
  6. Andy

    Andy Committee Member & Outreach

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    Someone signing up to the mailing list is not automatically entered into the study as a potential participant, in the same way that, for example, I can sign up to receive newsletters from a website but not have an account with that website.

    What I'm suggesting is that if you have already signed up to the original mailing list, there is no harm in signing up to this new one, other than potentially receiving two update emails from us at a time.

    If you are confident that you are on the original mailing list, then don't sign up to this new one. The first list was our budget workaround at the time, the second list is now the 'proper' one, and all on the first list should be merged into the new list in time.

    No matter which list you are on - first, second or both - you will still need to sign up to the recruitment process itself once it's opened.

    I hope that clarifies it, let me know if not.
     
  7. Andy

    Andy Committee Member & Outreach

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    Yes, for ease of handling samples (domestic postage is easier and cheaper than international), and ease of having a ready made cohort of suitable controls (participants in the UK Biobank, not to be confused with the UK ME/CFS Biobank). Should we find recruitment difficult then we will look overseas.
     
  8. Andy

    Andy Committee Member & Outreach

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  9. Annie

    Annie Established Member

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    Thank you so much to everyone involved. It’s wonderful and much needed good news. I see that loads and loads of people are signing up.
     
    Woolie, Amw66, andypants and 16 others like this.
  10. Sean

    Sean Senior Member (Voting Rights)

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    For a start, it is 3.2 million pounds less they can grab from the UK research pot to further indulge their delusions.
     
    Woolie, Amw66, andypants and 9 others like this.
  11. NelliePledge

    NelliePledge Moderator Staff Member

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    yes very much agree I don’t even understand what point he’s trying to make about post covid-patient activists it seems to imply ME people will join the ranks of post covid folk which is a bizarre way of seeing/putting it.
     
    Woolie, EzzieD, Kitty and 5 others like this.
  12. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Sticking to just UK subjects is to my mind crucial to the science for purely technical reasons. Even if people have similar ancestors a spurious result could very easily come out of the trial just because of a slightly different racial mix. If it really proves hard to recruit 20,000 from the UK then a compromise may be justified.

    But if 3,300 people have signed on in 12 hours, and they are just the ones who have managed to get up and brush their teeth by noon and log on, then 20,000 should be doable. It has always seemed to me that the impetus to get this going is so strong that recruitment must go well.

    Canada might be a good place to do a replication study though, because genetic background is broadly similar. That would get the genetics really nailed.
     
  13. obeat

    obeat Senior Member (Voting Rights)

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    Presumably anyone with long-term LongCovid who meets ME criteria could be eligible?
     
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  14. NelliePledge

    NelliePledge Moderator Staff Member

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    I’ve shared the guardian article on Facebook but also got a bit carried away and pinged it to most of my friends and family on messages. Never done that before but I feel this gives me a really positive message that I can use to highlight ME. Feeling chuffed. As well as the actual research the advocacy benefits are going to be BIG :D
     
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  15. NelliePledge

    NelliePledge Moderator Staff Member

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    Ooh good comms angle down the line:thumbup:
     
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  16. Sasha

    Sasha Senior Member (Voting Rights)

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    Maybe one for the FAQs, @Andy - is it likely that post-corona patients are likely to get a 'post-coranavirus sydrome' diagnosis rather than an ME/CFS one from their clinicians and so be ineligible even though they probably should be?

    (Edit: the FAQs currently say that you have to have an ME or CFS diagnosis.)

    What do you think, @Jonathan Edwards?
     
    Woolie, ladycatlover, Kitty and 8 others like this.
  17. Robert 1973

    Robert 1973 Senior Member (Voting Rights)

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    Huge thanks to @Andy @Simon M Chris Ponting, Sonya, Luis and everyone else that’s helped to make this happen.

    I notice that there is nothing about this on the Science Media Centre website (yet). I don’t know if that it a good or bad thing but it probably explains why there isn’t anything on the BBC website about it yet.

    Like Jonathan, I was disappointed with Tom Whipple’s analysis in The Times – particularly as he has is one of the few UK journalists to have written articles critical of PACE. But great to have it mostly very well reported in the Times and the Guardian, which hopefully will lead to other media outlets picking it up.
     
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  18. Andy

    Andy Committee Member & Outreach

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    Anybody who confirms that they have been diagnosed with ME or CFS by a clinician will then be eligible to complete the questionnaire that will determine if they are eligible to submit a sample or not. In terms of eligibility, we are not concerned about the cause of the symptoms that were diagnosed by a clinician to be ME or CFS.
     
  19. Medfeb

    Medfeb Senior Member (Voting Rights)

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    Wow. Congratulations to all who have made this happen.

    Haven't read much of the press coverage but saw Dr. Muirhead's interview. So excellent.

    Anything from the SMC yet? Looking forward to how they cast this one.
     
  20. Sasha

    Sasha Senior Member (Voting Rights)

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    @Andy - I still haven't received an email but gather from someone who has that it says that the study’s Management Team will host a Q&A webinar at 4pm on Monday 6 July, which is great news.

    I just tried to add it to the S4ME calendar but I've forgotten how to do it.

    Can you help?
     
    Kitty, MeSci, Simon M and 2 others like this.

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