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(Australia) Story in Weekend Australian today on CFS and PACE study

Discussion in 'General ME/CFS News' started by Dolphin, Mar 27, 2011.

  1. Dolphin

    Dolphin Senior Member

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    I don't agree with some of the claims of efficacy and safety made in this article. And when they say that 30% recovered, it's the weirdest definition of recovery you're likely to come across. Anyway thanks to those in the ME/CFS community (I don't count Andrew Lloyd in that) for speaking to the journalist, etc.

     
  2. insearchof

    insearchof Senior Member

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    Thanks very much for posting this Dolphin. I missed out on getting the paper, so I appreciate the post.

    ISO
     
  3. Dolphin

    Dolphin Senior Member

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    A quick comment on the one third which this article claims went on to live a normal life (some people may wonder where this statistic came from)

    In the published protocol paper http://www.biomedcentral.com/1471-2377/7/6 , a
    recovered group was specified as one of the secondary outcome measures:
    ----
    ----
    The Lancet paper did not include this information. I think it's reasonable to
    assume this was because the numbers were not particularly impressive.

    Similarly, in the published protocol paper
    http://www.biomedcentral.com/1471-2377/7/6, "improvers" were defined as
    follows:
    --------
    -------
    Again, this information was not given in the final paper.

    The one third refers to those who scored in the "normal range" on the Chalder
    Fatigue Scale and the SF-36 Physical Functioning Scale (actually it was 30% for
    CBT, 28% for GET, along with 16% for APT and 15% for SMC). However the
    thresholds they chose were unusual and very debatable: a SF-36 PF score of 60 or
    more and a Chalder Fatigue Scale (Likert scoring) of 18 are less. To qualify for
    participation, one had to have a SF-36 PF score of 65 or more (60 for a period)
    along with a Chalder Fatigue Scale (bimodal scoring) so one's scores might not
    change from beginning to end and one could still be counted in this group!

    In the accompanying editorial, Bleijenberg & Knoop describes this group as the
    recovered group. This description of the "one third"/"30%" has recovered has
    been used in a few lay media articles unfortunately.

    These sorts of issues were discussed in Cort's article and in the comments underneath at: http://forums.phoenixrising.me/content.php?369-A-Hitch-in-its-Step

    For a more thorough discussion, try: http://forums.phoenixrising.me/showthread.php?4926-PACE-Trial-and-PACE-Trial-Protocol (message #69 on is for after the Lancet paper came out)
     
  4. Tulip

    Tulip Guest

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    Geez someone better tell my body that the exercise I have been doing for YEARS (yoga and walking) and my go get em attitude should have cured me!!.

    What a joke. God I hope karma comes back and slaps these quacks one day.
     
  5. insearchof

    insearchof Senior Member

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    Dophin, was this article available or accessible online, and if so does any one have a link? I would be interested in viewing any comments and or letters that this piece may have generated.
    Thanks
     
  6. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    NYC (& RI)
    Not that bad an article. Though it did fall for their sleight of hand of replacing pacing with folger's crystals labelled "adaptive pacing". Lloyd and Sharpe: scumbags par excellence.
     
  7. Dolphin

    Dolphin Senior Member

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    The version I saw had been scanned in by somebody.
     
  8. Megan

    Megan Senior Member

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    Thanks Dolphin
     
  9. TinyT

    TinyT Senior Member

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    Australia
  10. taniaaust1

    taniaaust1

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    Sth Australia
    So its obviously a case of blame the patient when the patient actually cant continue following the plan due to declining health.

    Im so glad the ME/CFS society has spoken out on this as in the past they put an article of Andrew Lloyds in their journal which I found quite offensive to us.

    (It was at that point I then dropped out of the society and didnt renew my membership as I was so offended by bullcrap of his being put into the CFS/ME societies journal and unfortunately the great one the SA society used to have (never seen any crap articles in the SA one) had been merged into the other one from other state).

    He's no so called CFS/ME specialist to be sharing his views... if we want to hear any Wessely views.. we just need to speak to most doctors
     
  11. ixchelkali

    ixchelkali Senior Member

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    At least this article presents both sides instead of trumpeting that PACE proves that exercise will cure CFS. File this one under "could be worse."
     
  12. insearchof

    insearchof Senior Member

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    Hi Taniaaust1

    I dont have a problem with them publishing articles like that, because sometimes it is the only way I come across them and know what the position is here in Australia. It also gives members an opportunity to respond or take some sort of action against the existing state of play.

    More concerning to me, is their selective advocacy policy. Whilst they decide to speak out and raise awareness on PACE they remain totally mute on XMRV.
     
  13. Dolphin

    Dolphin Senior Member

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    The SA group were using Emerge for a while but have now gone back to their own magazine.
     

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