Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Brave Sir Prof Wessely discusses death threats 29th March 2017

Discussion in 'Action Alerts and Advocacy' started by Countrygirl, Mar 1, 2017.

  1. lilpink

    lilpink Senior Member

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    I tend to find such politesse wanes over almost 5 decades of this disease. But I take your point. My concern is more to do with the fact that the Teflon coated Wessely school seem capable of shutting down any debate or dissemination of what was really going on through the whole process. Their ability to simply say 'nothing to see here ..move along' and for that message to trump truth. The machinery in place that allows that to happen is the issue. I'm very happy to embrace media, science etc when it decides to ignore that 'misdirection' but I do wish more people had been more curious earlier on in the process. 'In order for evil to flourish, all that is required is for good men to do nothing'. I wouldn't agree that 'now' is the time to start being overarchingly polite however. The war is not over. It might only be the beginning of the end.
     
  2. Barry53

    Barry53 Senior Member

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    You can still smile whilst biting hard though! ;)
     
    Last edited: Mar 19, 2017
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  3. user9876

    user9876 Senior Member

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    I was about to say the data that has been released doesn't show PACE was flawed (but does suggest it). What the data shows is that they spun their results to be much better than they would have been in the protocol without making that clear.

    To my mind the trial is obviously flawed in that the main measurements are subjective scores when two of the interventions are aimed at changing patients views of symptoms. The data does show some of that in that the 6 minute walking test results were not as good as the subjective measures and less correlated with the subjective scores on 2 interventions (i think). So the data released does support this view. The fitness data would support this view as well but they have only released graphs and refused to release even the numbers behind the graphs.

    Of course there are many other issues with the trial and its conduct and the release of the full (anonymised) data set may help show some of the other affects.

    But basically the data showed they lied to us and an analysis of the protocol says they ran a meaningless trial.
     
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  4. lilpink

    lilpink Senior Member

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    Lol. Indeed. I think all of us with this disease are very good at appearing one thing whilst feeling another. Of course not in the way the WS would have it. I have spent the last 47 years, every moment of every day of those last 47 years, trying to wear a better veneer to present to the world when compared with how awful I might feel inside. In fact the very reverse of what we are told we are guilty of. IOW I've had a lot of practise, so I think 'smiling' and 'biting hard' are easily doable ;)
     
  5. Barry53

    Barry53 Senior Member

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    I think what is clear, is that if the trial authors had not try to grossly spin a weakly designed trial, but had instead been above board about their findings, then PACE would have probably sunk into obscurity like - I imagine - many other inconsequential clinical trials. Not great, but maybe would have been seen as an honest but ill-conceived endeavour. But it is what they did afterwards, to try and spin a silk purse out of a sows ear, that is probably the greatest crime; so that it (and they) did not sink into deserved obscurity, but instead turned it into the corrupt vanguard of mistreatment we know today.
     
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  6. lilpink

    lilpink Senior Member

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    'It's not the crime, it's the cover-up'? Only to a point. I'd argue PACE was premeditated. Otherwise why should it be the only research (part) funded by the DWP?
     
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  7. Barry53

    Barry53 Senior Member

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    Actually I do agree with that. When writing my post I had momentarily forgotten the DWP implications, which I have banged on about elsewhere in PR. Thank you for the reminder. All the more reason for a public enquiry ... and all the more reason it will be very hard to get one.
     
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  8. Solstice

    Solstice Senior Member

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    I wouldn't say meaningless, we've obtained definitive prove that CBT/GET cures noone, not even those struggling with minor fatigue issues. It's the only positive that's come out of this in my opinion.
     
  9. Barry53

    Barry53 Senior Member

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    And if only that had been reported honestly in the first place, the lives of a great many people would have benefited from being fairly treated, rather than abused by the system.
     
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  10. Yabisa

    Yabisa

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    That'
    You're right, not just a sociopath, a PSICHOpath.
    Who else , in their sane mind, can think first in his EGO( and money ) than a DOCTOR? who doesn't care the health of their patients?
    I really think we ( patients ) should DENOUNCE him in front of human rights court.
    Not everything can be SCIENCE.
     
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  11. Yabisa

    Yabisa

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    Wine for patients also???
     
  12. Jan

    Jan Senior Member

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    You'd need to be drunk to sit and listen to Wessley lecture!
     
  13. Diwi9

    Diwi9 Senior Member

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    Did anyone attend?
     
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  14. RogerBlack

    RogerBlack Senior Member

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  15. Cheshire

    Cheshire Senior Member

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    Nathalie Wright tweeted about the conference. It is a bit difficult to follow. But here are some of her tweets:









     
  16. arewenearlythereyet

    arewenearlythereyet Senior Member

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    Grrrrrr. I feel a "Jan" coming on :mad::mad::mad::mad::mad::mad:

    The man is just plain thick if he can't see what's as plain as the nose on his face.

    He's right about anxiety....though isn't his job to make it go away rather than create it?
     
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  17. Chrisb

    Chrisb Senior Member

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    I like the bit where it says "Simon Wessely introduced, it is remarked how many positions he has.." Sadly it fails to enlighten us as to how many of them are contradictory.
     
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  18. Cheshire

    Cheshire Senior Member

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    Janet Eastham (journalist training) posted a transcription of Q&A (his answers are more appalling than one could seriously imagine, I can't understand how this guy is still in place):





     
    Last edited: Mar 30, 2017
  19. Binkie4

    Binkie4 Senior Member

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    A couple of days ago while dipping into Osler's web, I came across Cheney's assertion that 20-50% of ME patients have lost their fingerprints or parts thereof. This fits with the difficulty I had getting into US last time I went. Border official told me I would make a good criminal because I would leave no fingerprints.

    Is it my false illness beliefs that have erased them? Wonder what explanation Wessely would give?


    ( posted before seeing Janet Eastham's record- thank you to Janet)
     
    Last edited: Mar 30, 2017
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  20. lilpink

    lilpink Senior Member

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    [/QUOTE]

    He's just handing it to us on a plate. It's laughable.
     
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