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DecodeME - UK ME/CFS DNA study underway

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

  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    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!
     
  2. Kitty

    Kitty Senior Member (Voting Rights)

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    This is just brilliant. HUGE congratulations to everyone involved!
     
  3. Kalliope

    Kalliope Senior Member (Voting Rights)

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  4. ringding

    ringding Senior Member (Voting Rights)

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    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)

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

    Andy Committee Member & Outreach

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    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.
     
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  7. strategist

    strategist Senior Member (Voting Rights)

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    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)

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    Congrats and huge thanks to all involved!
     
  9. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    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)

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    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)

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    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)

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

    Sasha Senior Member (Voting Rights)

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    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 Senior Member (Voting Rights)

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  15. strategist

    strategist Senior Member (Voting Rights)

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    At least the newspapers don't quote any of the PACE trial con artists.
     
  16. Sasha

    Sasha Senior Member (Voting Rights)

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    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.
     
  17. Sasha

    Sasha Senior Member (Voting Rights)

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    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...
     
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  18. Kalliope

    Kalliope Senior Member (Voting Rights)

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    (Article with interview of Muirhead is paywalled)

     
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  19. Sasha

    Sasha Senior Member (Voting Rights)

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  20. Sasha

    Sasha Senior Member (Voting Rights)

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    https://meassociation.org.uk/2020/0...r-decodeme-the-largest-ever-me-cfs-dna-study/
     
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