Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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The Centre for Welfare Reform: Major breakthrough on PACE trial (August 19) (well referenced)

Discussion in 'General ME/CFS News' started by Dolphin, Aug 19, 2016.

  1. Dolphin

    Dolphin Senior Member

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    Comet, Chrisb, SilverbladeTE and 20 others like this.
  2. Dolphin

    Dolphin Senior Member

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    mango and Bob like this.
  3. Dolphin

    Dolphin Senior Member

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    mango, Jeckylberry, L'engle and 2 others like this.
  4. Dolphin

    Dolphin Senior Member

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    mango, Jeckylberry, Mel9 and 7 others like this.
  5. Daisymay

    Daisymay Senior Member

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    Wow! That's an excellent article.....
     
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  6. Bob

    Bob

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    Ha! Couldn't help but having a good chuckle at this quote! A short quote but to the point! Perhaps sums up his huge output?
     
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  7. moosie

    moosie

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    I haven't read the whole article but I zipped down to the bottom to see how long it was and right at the bottom there is a scan of a document from the SMC - bit hard to read but blimey - a major meeting on the so called 'harassment'. Makes them look a bit . . . what can I say . . . strange? What were they doing? I don't want to be rude but it seems a bit like mass hysteria to me :)
     
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  8. Bob

    Bob

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    Just had a thought after reading the last paragraph: £200,000 would allow QMUL to employ a statistician for four years! They clearly need one!
     
    natasa778, justy, sue la-la and 11 others like this.
  9. Sasha

    Sasha Fine, thank you

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    Excellent article - and he's absolutely right about how shameful - utterly shameful - this is for QMUL. Their reputation is in the dirt. What can they be thinking?
     
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  10. user9876

    user9876 Senior Member

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    It's worth noting the MRC and sense about science (who run materials) were involved in this meeting. So it really is all trials but pace.
     
  11. Sasha

    Sasha Fine, thank you

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    Interesting that Sense About Science USA (Trevor Butterworth) are so good in supporting patients over this PACE stuff.
     
  12. Esther12

    Esther12 Senior Member

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    I love watching PACE and QMUL get skewered by their own words.

    Wonder who is currently a part of QMUL's committee, and if we could inform them of what's going on? That info is probably public somewhere. If they need to sign off on decisions like this, and are currently only getting spin from White, a dose of reality could change things pretty quick.

    It's the 'USA' that's key.
     
  13. moosie

    moosie

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    Good Lord. I hadn't really taken that in.
     
  14. Jeckylberry

    Jeckylberry Senior Member

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    Wow. Thanks for posting this @Dolphin with the relevant tweets.

    Why was that agenda added at the end? Just curious. I like the bit about scientists "coming out".
     
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  15. Jeckylberry

    Jeckylberry Senior Member

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    The links are really interesting too. Really nice interview with David Tuller on TWIV,
     
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  16. leela

    leela Slow But Hopeful

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    I wonder why just that one name was redacted from that agenda at the end? Curious!
     
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  17. Simon

    Simon

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    This is an incredible, foresnic report on the Tribuanl ruling, together with background and incisive analysis. Well worth a read. I will just quote the conclusion, that compares the £450 QMUL said it would cost to extract simple data for an earlier FOI request (meaning they could refuse it on cost grounds) with the £200k they spent trying to prevent the release of even less data for this one.

     
    Last edited: Aug 20, 2016
  18. adreno

    adreno PR activist

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    Only someone who has so thoroughly refuted the study is allowed such remarks :)
     
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  19. user9876

    user9876 Senior Member

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    Council members

    http://www.arcs.qmul.ac.uk/governance/council/Council membership/index.html

    It includes Thornton who gave evidence.

    There is Prof Richard Ashcroft who is Professor of Bioethics in the School of Law:
    So I wonder what his view would be?

    There are also external council members who may be less tied to the internal politics.

    Sir Nicholas Montagu is the chairman and is also the chair of the financial onbudsman service which is meant to help consumers with banking issues. If his governance of QMUL allows such anti-patient views to persist and be funded I don't think this would reflect well on how the onbudsman would protect consumers.
     
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  20. user9876

    user9876 Senior Member

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    Probably someone taking notes and hence has their privacy preserved.
     

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