Phoenix Rising tells QMUL: release the PACE trial data
Mark Berry, Acting CEO of Phoenix Rising, presents the Board of Directors’ open letter to Queen Mary University of London (QMUL) urging them to release the PACE trial data, and hopes that other non-UK organisations will join British charities in the same request...
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Dodgy altered quotes in titusLcarus XMRV youtube video

Discussion in 'Action Alerts and Advocacy' started by Esther12, Nov 16, 2010.

  1. Esther12

    Esther12 Senior Member

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    Dodgy Esther whinging when I shouldn't

    New Edit: Sam said I was totally wrong. In which case I really do owe titusLcarus and ukxmrv and apology. Especially shaming as I was complaining about people not checking their sources properly. I really can be a berk.

    original post:

    Looks like quotes have been taken and altered from the PACE CBT guidelines.

    http://www.youtube.com/watch?v=WonM97JKeM0

    Anglia ME Action provided the real stuff here:

    http://www.forums.aboutmecfs.org/sh...L-UK-CFS-ME-PACE-TRIAL-Manuals-are-NOW-ONLINE.

    eg:

    "It is important that you acknowledge that their illness is real but its effects can be reduced by the way they manage it."

    was altered to:

    "It is important that you acknowledge that their illness is real but its effects can be reversed by the way they manage it."

    This is such a bad technique for CFS patients to use. It's dishonest and morally wrong - but also it always comes back to hurt us in the long run. Other patients can end up using these quotes in discussions and debates, and then get made to look stupid when someone bothers to check up on the origins of the quote.

    I'm not a youtube member, so can't contact the person directly, but this is something we should all be trying to stamp out. I'm pretty unhappy with the way some will take quotes misleadingly out of context to attack the CBT lot - but to actually alter quotes to make others look bad! It makes it so easy for people to dismiss everything we say when they find this sorts of dishonesty within our arguments.

    edit: I guess there is a possibility that this was an honest mistake... but this is something that really damages us imo. It's a mighty problem
     
  2. ukxmrv

    ukxmrv Senior Member

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    Esther,

    We are only weak, sick and cognitively challenged patients. I'd like to give people in this example the benefit of the doubt. I'd also like to thank them for bothering to do anything.

    Give how ill we are it is unfair and uncharitable of you (in my opinion) to make accusations and suggest that anyone is being "dishonest and morally wrong" unless you have proof and can back up that they are making a deliberate error.

    It would be easy for a spell checker or a bad typist to enter the wrong word. Please go gently on them.

    Who appointed you as judge, jury and executioner for ME patients trying to produce work under these circumstances?

    Anyway, have you checked to see that the quote they used to not used anywhere else? What exactly are you contributing here?

    I would not like to stamp out anyone doing anything creative and your stance worries me far more than any errors in their work.

    I would ask that you reconsider your actions, and then edit your post and heading to reflect that.
     
  3. Esther12

    Esther12 Senior Member

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    I've yet to execute any-one.

    I did add to my post "I guess there is a possibility that this was an honest mistake..." five days before you replied.

    It is difficult to imagine how it could be an honest mistake though. For spellcheck to just coincidentally go through a piece about CBT for CFS making it sound worse than it is would be very strange.

    I did search for a legitimate source for these quotes, as I was thinking of using them myself... luckily I didn't presume to trust this video and eventually came to realise they were altered from the PACE CBT manual.

    I've already tried to explain why I think these sorts of misrepresentations can be so damaging - and I certainly do not understood why such 'creativity' should be applauded.
     
  4. ukxmrv

    ukxmrv Senior Member

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    Esther, I use voice recognition software and yes, my spell checker does come up with weird things. Especially if a grammer checker jumps in as well.

    You have no idea what your accusations and hard words can do to a patient and what condition they are in.

    Please ask the moderator to change your heading and edit your original email if you cannot do so.

    That is unless you have any proof that this is other than an innocent mistake.
     
  5. Sam Carter

    Sam Carter Guest

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    Hi Esther,

    The quote is accurate. It comes from p63 of the PACE Trial CBT Therapists Manual under the heading of "Fixed physical attribution of illness."

    """""""""""""""""""""""""""""""""
    If participants are insistent that there is an ongoing "physical" problem, it is rarely
    helpful to directly challenge them on this point. It is important that you acknowledge that
    their illness is real but its effects can be reversed by the way they manage it.
    """"""""""""""""""""""""""""""""
    (emphasis added.)

    For the really sinister part check out p67 ("Feeling that a physical cause has been missed and wanting further
    investigations") where therapists are trained to dissuade patients from seeking further medical tests.

    Sam
     
  6. Esther12

    Esther12 Senior Member

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    That would leave me looking very stupid.

    Thanks Sam, I'll have a look into that and then get back to you.

    Edit - I have to admit, I've never d/ld a torrent before - I might not get around to this for a while so will edit stuff now.
     
  7. Esther12

    Esther12 Senior Member

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    It looks like it might be entirely accurate, rather than any sort of mistake, in which case I'm far more of an arse than you had earlier thought.
     
  8. George

    George waitin' fer rabbits

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    And a really special person for being able to admit it! Hugs, and doggy nose kisses.
     
  9. helen41

    helen41 Senior Member

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    Esther, the "arse" is the one who gets their head stuck, never the one who admits a mistake
     
  10. Wayne

    Wayne Senior Member

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    Thanks Helen. I was diligently trying to figure out what an "arse" is, and now I have more information to go on. Hey Esther, I never did think you were an arse, even though I didn't know what it was (still don't). But it just didn't sound like you. :Retro wink:

    Wayne
     
  11. Esther12

    Esther12 Senior Member

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    Thanks for the support as I come to terms with my idiocy!

    I'm just gutted that I'm not going to be able to get back on to my high-horse for some time now.
     
  12. ukxmrv

    ukxmrv Senior Member

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    Esther I never thought that you were an arse. I was just worried about the patient being accused. I know of a lot of hard working people labouring away to produce things (that may not always be to our taste) and getting things wrong sometimes. That includes you of course.

    Would it be possible for you to get this thread deleted just in case they see it?
     
  13. Wayne

    Wayne Senior Member

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    LOL :D - Kudos to you Esther for your sense of humor! :thumbsup:

    Wayne
     

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