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ME/CFS Grand Challenge (MEGA)

Discussion in 'Active Clinical Studies' started by Scarecrow, May 16, 2016.

  1. Sasha

    Sasha Fine, thank you

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    I genuinely think they're going to be steamrollered as flat as pancakes, Comet. I think we should be cheering this on. It's clear that the biomedical scientists are going to be in charge.
     
  2. Comet

    Comet I'm Not Imaginary

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    I can only hope that you are right about the BPS crowd. There are a lot of letters in the alphabet...
     
  3. Esther12

    Esther12 Senior Member

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    I'm not sure it will be irrelevent to their careers, or their ability to further influence future research in the UK.

    I'm not withholding support from GDS, but his involvement isn't enough to have me support White, Crawley and Collin.

    I'm not seeing any steamrollering so far.
     
  4. Comet

    Comet I'm Not Imaginary

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    Not meaning to withhold support from people like George Davy Smith. It's just that... well, you know...
     
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  5. Sasha

    Sasha Fine, thank you

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    I know, I know... but...
     
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  6. Comet

    Comet I'm Not Imaginary

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    Not arguing with you, @Sasha. :) Just expressing an opinion. But we have been steam rolled, and they're not stopping. They seem to be gaining steam.
     
  7. Sasha

    Sasha Fine, thank you

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    I don't think it's about supporting individuals - it's about supporting the study. And, given that GDS is in charge of it and that there's a whole bunch of bioscience talent and that it's a bioscience study, that's enough to give me confidence in it. The BPS crew are irrelevant. They'll have zero influence.

    I doubt we'll ever see it, publicly. I don't think we should expect to. But I think it's going to happen, all the same.
     
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  8. Comet

    Comet I'm Not Imaginary

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    You're right, but... :nervous:
     
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  9. Sasha

    Sasha Fine, thank you

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    I don't see them gaining steam - quite the reverse. They're under huge pressure with PACE now.

    We've been steamrolled, for sure, but I'd like to see them try to steamroll GDS.
     
    Comet likes this.
  10. user9876

    user9876 Senior Member

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    I think we should be supportive. But we should also be constructively critical particularly around the information they collect about patients and who they include and how people are found. I think patients can make a real contribution here leading to a better study.
     
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  11. Esther12

    Esther12 Senior Member

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    Hold on... I was using your language!:

    The more knowledge we get of what is going on bheind the scenes, the more I think it's often worse than what's happening in public.

    GDS was a signatory to that letter complaining about Wessely receiving too much criticism. I don't think that they're going to want to steam roll him.
     
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  12. Comet

    Comet I'm Not Imaginary

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    Let's hope so! :)
     
  13. ronddejambe

    ronddejambe

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    I agree!
     
  14. Comet

    Comet I'm Not Imaginary

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    I'd like to be all for this study, it's just that I can't figure what would benefit the BPS crowd if non-psychiatric causes are found for our disease. Why would they be involved in a study that wants to shoot down the theory upon which their careers are based?

    This I did not know. This is significant, IMO.
     
  15. Comet

    Comet I'm Not Imaginary

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    I'm not sure what to think at this point. But I know I am developing a fear of acronyms.
     
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  16. Sasha

    Sasha Fine, thank you

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    Totally agree with that.

    Oops! But still, I do think that, given that GDS is in charge and has made his views on the BPS model clear, and that he's got all those bioscientists around him and the other bunch appear to be mere onlookers, we can get behind this study - with the caution that @user9876 mentions.

    I suspect plenty of people will have provided context on that now.
     
  17. ronddejambe

    ronddejambe

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    I imagine they believe in their theories. So really, to them you could find something in a blood test in M.E and they'll STILL be arguing that there's also a psychosomatic element and asking why people are stigmatising those with mental illnesses by arguing so vociferously against that. Now at that stage I don't think people will take much note, but they believe they're right to a degree and only trying to help.
    They're not monsters. They're wrong and they've done harm, but I imagine they believe they're genuinely doing good research.

    And I agree we should be constructively critical as far as MEGA goes. They have to get this right!
     
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  18. Sasha

    Sasha Fine, thank you

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    They might not want to be on it: at the meeting, they seem to have been observers at the workshop. We don't know whether they'll be involved or not, at this point.

    That was in December 2012:

    http://www.meassociation.org.uk/2012/12/letter-in-the-independent-on-sunday-2-december-2012/

    And there's been a lot of water under the bridge then - not least, he's met a lot of biomedical scientists who know the score, including @Jonathan Edwards, I believe.

    We have to bear in mind that some people can be very convincing - until other people come along with the full story. Let's not hold it against GDS that he took the complaints of some fellow academics on good faith.
     
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  19. Esther12

    Esther12 Senior Member

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    Wildcat and Comet like this.
  20. Sasha

    Sasha Fine, thank you

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    Note also this, from 2005:

    http://forums.phoenixrising.me/inde...f-caution-george-davey-smith-2005-2006.38371/

     
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