1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for CFS here.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 18th March 2024 is here.
    Dismiss Notice
  3. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

DecodeME - UK ME/CFS DNA study underway

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

Thread Status:
Not open for further replies.
  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,274
    Location:
    London, UK
    Very well done all those involved.

    It has been easy to think that nothing changes, but it has. Things have changed out of all recognition since the days when I first learnt about the ME world in 2014. An awful lot of people we know have contributed to getting this realised by persevering in the face of what seemed a brick wall.

    I would sign up at once - but I don't think they would have me!
     
    merylg, Woolie, MarcNotMark and 57 others like this.
  2. Kitty

    Kitty Senior Member (Voting Rights)

    Messages:
    5,051
    Location:
    UK
    This is just brilliant. HUGE congratulations to everyone involved!
     
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,238
    Location:
    Norway
  4. ringding

    ringding Senior Member (Voting Rights)

    Messages:
    409
    Location:
    Bristol, UK
    You've helped make a lot of people happy this morning Andy et al. Thank you. :)

    Bit of a numpty question here, but when press releases go out do they include example images to include? Just wondering if the Guardian and others choose a photo of a 'tired person' over supplied photos, or whether they're just choosing something they feel appropriate having not been sent anything.
     
  5. Adam pwme

    Adam pwme Senior Member (Voting Rights)

    Messages:
    624
    This is amazing, huge thanks to @Andy and all involved :)
     
  6. Andy

    Andy Committee Member

    Messages:
    21,810
    Location:
    Hampshire, UK
    I don't know what is usual, but in our specific example I don't think images were supplied. Given that the ME Association were trying to build up a portfolio of realistic pictures of pwME for general press usage, my guess is that most press releases don't contain images.
     
    merylg, Woolie, andypants and 14 others like this.
  7. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,234
    Thank you for making this happen. This is the latest sign that the situation is improving for patients.

    I signed up, but am not in the UK.
     
  8. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    2,855
    Location:
    betwixt and between
    Congrats and huge thanks to all involved!
     
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    13,274
    Location:
    London, UK
    I agree that the Guardian does not seem to have made any stupid mistakes this time, but the contrast with the photo in the Times is telling. The Times has real people and you can see they are real people. The Guardian presents a fantasy through a veil of its own preoccupations. The piece is so short it is almost 'OK we have to cover this but let's not lift the lid too high - we might discover some egg on our face'.

    I am a bit disappointed in To Whipple's piece in the Times. He really doesn't see the wood for the trees and tries to play all sides equally. On the other hand his piece is relegated to the bottom, as if maybe this is an echo of an old story finally fading off the page.
     
  10. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,769
    Location:
    UK
    YEEEEESSSSSSS!!!

    'Game-changer' has become a cliche but this really is one. We've been waiting decades for serious, fundamental research like this, that has the potential to change everything.

    Not only that, but the fact that the MRC and NIHR are funding it to the tune of £3.2m is surely a sign that they realise that the 'deconditioning' idea is dead.

    Huge congratulations and thanks to @Andy, @Simon M, @Chris Ponting and the rest of the team for all their hard work and perseverance.
     
  11. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

    Messages:
    2,855
    Location:
    betwixt and between
    Interesting that the Times' print edition titled without the 'F'-word: "Search for genetic clues to ME" --

    whereas in the online edition it's "Chronic fatigue syndrome: Search for genetic clues"
     
    Last edited: Jun 23, 2020
  12. mariovitali

    mariovitali Senior Member (Voting Rights)

    Messages:
    499
    Very much deserved @Andy , well done to everyone else involved !
     
  13. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,769
    Location:
    UK
    In the media, photos of real people are used when real people have been interviewed. Otherwise, images from stock libraries are used, and they use models. So the difference is really a function of The Grauniad not interviewing any patients. (Which is not inconsistent of presenting a fantasy through the veil of its own its own preoccupations but I thought this article was pretty good, certainly by the standards of The G's usual coverage of ME.)
     
  14. Sean

    Sean Moderator Staff Member

    Messages:
    7,045
    Location:
    Australia
  15. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,234
    At least the newspapers don't quote any of the PACE trial con artists.
     
    merylg, Sid, Woolie and 35 others like this.
  16. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,769
    Location:
    UK
    On the FAQs page of the DecodeME website, it says:

    How long will the GWAS study take to complete?
    In total, four years but we will release preliminary results as soon as we can, prior to publication. The sooner we can recruit participants, the sooner the results will be released.​

    So, @Andy, @Simon M, @Chris Ponting - could we knock four years off this thing by recruiting 20,000 eligible patients by March 2021?

    If I knew any PwME in real life, I'd be emailing them now! I think we all should be.
     
    merylg, Woolie, MarcNotMark and 18 others like this.
  17. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,769
    Location:
    UK
    Actually, that's a major, major change - usually, they'd be the go-to people on any article about ME. That's a very significant observation, strategist!

    The proper scientists have arrived...
     
    merylg, Woolie, andypants and 16 others like this.
  18. Kalliope

    Kalliope Senior Member (Voting Rights)

    Messages:
    6,238
    Location:
    Norway
    merylg, Woolie, andypants and 19 others like this.
  19. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,769
    Location:
    UK
  20. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,769
    Location:
    UK
    https://meassociation.org.uk/2020/0...r-decodeme-the-largest-ever-me-cfs-dna-study/
     
    merylg, Woolie, Kitty and 17 others like this.
Thread Status:
Not open for further replies.

Share This Page