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DecodeME - UK ME/CFS DNA study underway

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

  1. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    Congratulations!! Very good to hear:laugh:

    Just wondering: is this project financed by the UK government or was it financed by private funds?
     
    Woolie, Simbindi, andypants and 5 others like this.
  2. Andy

    Andy Committee Member & Outreach

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    You can only add threads to the calendar. Create the thread, then go back into it and use the Thread Tools drop down menu and use Calendar Add option.
     
    Kitty, Simon M, MEMarge and 2 others like this.
  3. Sasha

    Sasha Senior Member (Voting Rights)

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    By government - the MRC and NIHR are government-funded.
     
    janice, Woolie, Simbindi and 15 others like this.
  4. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    I still feel a little shellshocked at the news. And so happy.

    Every time a doctor starts to say something weird to me, like they did recently, I’m going to say, “oh did you know the MRC has just funded a huge genome study into the genetic causes of ME?” :innocent:
     
    janice, Woolie, ladycatlover and 22 others like this.
  5. Andy

    Andy Committee Member & Outreach

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  6. rvallee

    rvallee Senior Member (Voting Rights)

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    That article was great. Superb interview with Muirhead. Much better report than the Guardian, who as usual can't resist a knife to our back. That picture is so insulting.

    When I read the Guardian piece, right next to it was the BPS grievances report about the "perils" of online activism, how ironic. The "perils" are a large genetic study, impressive for an "anti-science" community. This study is the result of years of relentless activism. Though it's true that this is the most perilous of outcomes for our BPS overlords. Seeing other ME coverage below the article shows how much of a mess of things the Guardian has made.

    Congrats to everyone who made it happen! This is really big news.

    I had not thought of the public reaction and I think it would be really important to record the inevitable rantings on the "Bad ME quotes" thread. There will be a lot of angry people spewing vitriol at us, including the people who have been screaming "ACADEMIC FREEDOM" for years but somehow don't share the same sentiment when it comes to real research.
     
    janice, Woolie, ladycatlover and 17 others like this.
  7. rvallee

    rvallee Senior Member (Voting Rights)

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    Wow, impressive numbers!

    The UK is really the best place for this to happen. Bastion of woo, where 2 decades of clinical practice have failed miserably. But probably the country with the most organized patient community, able to spread the word to thousands in part thanks to all the bad influence from the BPS folks.

    And the timing could not be more perfect. Not only will COVID-19 bring many new patients in, it will also help massively with recruitment and visibility.
     
    janice, Woolie, ladycatlover and 10 others like this.
  8. JellyBabyKid

    JellyBabyKid Established Member (Voting Rights)

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    Can someone post Tom Whipple's piece? I have maxed out my 2 free articles. Thanks.
     
  9. Sasha

    Sasha Senior Member (Voting Rights)

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    Scroll to the bottom of Andy's post to see it full-size.

    (Link edited - thanks, @lunarainbows!)
     
    Last edited: Jun 23, 2020
  10. lunarainbows

    lunarainbows Senior Member (Voting Rights)

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    Woolie, ladycatlover, Kitty and 4 others like this.
  11. Sasha

    Sasha Senior Member (Voting Rights)

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    Kitty, Invisible Woman, Andy and 2 others like this.
  12. Chris Ponting

    Chris Ponting Established Member (Voting Rights)

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    There are so many people who made today's announcement the success that it has been, esp @Andy @Simon M Sonya, the charities, the funders and our comms/marketing partners. There will be many obstacles to overcome on this 4 year journey. But the best bit about today - for me - was that I now know that we won't be travelling alone. So thanks to everyone who commented and supported today. It means a lot.
     
    Binkie4, janice, ArtStu and 56 others like this.
  13. strategist

    strategist Senior Member (Voting Rights)

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    I hope this study will demonstrate that the right answer to "medically unexplained symptoms" is research to find the biological basis for them.
     
    janice, Woolie, ladycatlover and 27 others like this.
  14. Sasha

    Sasha Senior Member (Voting Rights)

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    Thank you, Chris! This has been a brilliant day for all of us. I've waited more than 30 years for serious, large-scale science like this. I can't thank you and your team enough for everything you've done and are going to do.
     
    janice, Woolie, ladycatlover and 24 others like this.
  15. Simon M

    Simon M Senior Member (Voting Rights)

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    “Feel the love – and the heat” :)
     
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  16. Barry

    Barry Senior Member (Voting Rights)

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    I notice the SMC have nothing to say about it yet, despite their pride in getting big scientific news to journalists hot off the press. I guess there must be a reason ... I wonder what it could be :rolleyes:.
     
    janice, Woolie, ladycatlover and 14 others like this.
  17. Sasha

    Sasha Senior Member (Voting Rights)

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    No pressure, no pressure....
     
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  18. Barry

    Barry Senior Member (Voting Rights)

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    Absolutely ... no pressure :).

    Very sincerely, huge congratulations to all involved in making this happen.

    My wife signed up, and as there is an option to register an interest if you don't have ME/CFS I signed up too - seemed like the right thing to do.
     
    janice, MarcNotMark, Chezboo and 12 others like this.
  19. MeSci

    MeSci Senior Member (Voting Rights)

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    I've changed my email address since the first sign-up - hope that's OK? I don't currently have access to the original one.
     
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  20. unicorn7

    unicorn7 Senior Member (Voting Rights)

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    That’s even more impressive!! The tide is really turning:thumbup:

    Also, the amazing amount of people signing up to contribute to research in such a short time, should hopefully interest journalists to turn this ridiculous narative around of patients being “against” research. Quite the contrary it seems!!
     
    janice, Woolie, ladycatlover and 21 others like this.

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