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UK: House of Lords to debate PACE study, Weds 6 Feb 2013

Discussion in 'General ME/CFS News' started by Sasha, Jan 31, 2013.

  1. Sasha

    Sasha Fine, thank you

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    The Countess of Mar strikes again:

    http://www.meassociation.org.uk/?p=14331

    Tony Britton writes:

    A short, hour-long debate on the controversial PACE Study has been scheduled to take place in the House of Lords Grand Committee Room next Wednesday (6 February).
    The Countess of Mar will ask Her Majesty’s Government what assessment they have made of the effects of the PACE trial (Pacing, graded Activity and Cognitive behaviour therapy: a randomised Evaluation) on provision of health and social care and welfare benefits for people with chronic fatigue syndrome/myalgic encephalomyelitis.
    The Countess is founder-chairman of the Forward ME Group of ME organisations that meets regularly at the House of Lords.
    SilverbladeTE, WillowJ, SOC and 3 others like this.
  2. user9876

    user9876 Senior Member

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    I think we should demand that Queen Mary's pay back the 5m the trial cost to the MRC as it hasn't been run in a professional manner.
    Persimmon, Dolphin and Min like this.
  3. peggy-sue

    peggy-sue

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    Just an hour?
    That isn't enough time for them to fit in enough of the "your honourables" that precede anything they say... far less saying anything!

    Joking aside, I do hope that Lady Marr will be able to explain exactly what is wrong with it, in words of few enough syllables for her audience to actually understand.
    Roseblossom, Min and Valentijn like this.
  4. snowathlete

    snowathlete

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    I think this can only be a good thing. Well done to the countess and thanks Sasha for letting us know!
    Roseblossom and Sasha like this.
  5. Stukindawski

    Stukindawski

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    The recent letter writing exercise bodes well no doubt as preparation for this debate. I would suggest to anyone who has a constructive improvement on what has been written in the course of that correspondence, send a message to the Countess, if that's possible.
  6. Nancy Blake

    Nancy Blake

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    The article about recovery can be found at http://journals.cambridge.org/psm/White and it would be great if someone good at statistics could take it apart in words of one syllable for us! My latest shock is reading the King's College Information for CFS patients, the section on 'The physiology of CFS' which informs us that it is resting that is causing all these symptoms researchers are finding. If resting can cause all this, the public should be warned!
    Bob and snowathlete like this.
  7. Mark

    Mark Acting CEO

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    Biophile's " 'Recovery' = level of bottom 0.8% of healthy working age population" sounds like a good starting point...

    Nicely put. :)
  8. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    Resting...first time I realized something was wrong I was walking fast up the street, after the toxic damp proofing incident and very bad Flu like bug had got me.
    used ot walk extremely fast (up and down the street several times a day to get messages for different family members, library, etc), adored walking :)

    Keeled over half way there, clammy skin, and in hell of a state (reminded me of when I lost a lot of blood and fainted)
    So, resting sure didn't cause that :p
    Valentijn likes this.
  9. Sparrow

    Sparrow Senior Member

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    Indeed. I was active too, leading up to that first crash. I would suspect almost none of us were "resting" when we got crushed by these symptoms.
    rosie26 and SilverbladeTE like this.
  10. peggy-sue

    peggy-sue

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    Like Silverblade, I was in the middle of a lovely great, long and fast hike when it hit me... like a tidal wave of treacle.
    SilverbladeTE likes this.
  11. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    butt injected treacle at that! :p (in regards to the degree of unpleasantness, which I think we can all agree on, hehe)
  12. snowathlete

    snowathlete

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    Incredibly easy to take apart this propoganda if you look at the statistics or language. It doesnt even take an expert, and they know that too. The problem is that most people only read the headline, and the summary of that is that GET and CBT result in patient recovery. A five minute glance at the paper is enough to see how rediculous it is, but who is going to call them up on it? The government certainly isnt... The press? Very unlikely.

    The problem is, even if we challenge it (which we should as best we can) we don't have enough power and influence to reverse the misinformation that people have absorbed from this crap, or to stop this sort of thing from happening again. There is a group of people who benefit from stuff like this, so it will keep happening and keep causing damage. It's very frustrating.
    PhoenixDown, Bob, Roy S and 3 others like this.
  13. barbc56

    barbc56 Senior Member

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    Yes, public service messages at the least. I'm glad I don't get restful sleep as I might be in much worse shape than I'm in now.;)
    Sigh.
    Barb
    Dolphin and Valentijn like this.
  14. Firestormm

    Firestormm Guest

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    WillowJ likes this.
  15. WillowJ

    WillowJ Senior Member

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    After Lady Mar's nice opening speech, some chap (didn't give his name and no name banners like American TV would supply - I guess they figure everyone who is watching reads the British papers and knows these Peers on sight) stands up to talk.

    He begins with an argument that:

    RED HERRING

    This has nothing whatsoever to do with the argument that the PACE trial has bad analysis and the stated results are not supported by the data and appear to be spun. Doesn't matter what other research exists or doesn't exist. Doesn't matter whether or not we know any pathology. What matters is that PACE and all its related publications have very bad scientific method. The above point (besides being highly misleading) is not remotely pertinent.

    argh, lost half my post and a lot of work. don't know why 'enter' removes the last several paras sometimes...

    ETA: from Alex's post I've identified above chap as Lord Winston (same person as said quote Alex cited as him)

    ETA #2:
    same RED HERRING

    also, terribly unconvincing and misleading. 5,874 papers in 20+ years does not represent 'extensive work' in research.

    MS (which is not a particularly well-funded or desirable field of study and is only lately escaped from treatment as 'hysteria' within the past 2 decades or so) has nearly ten times as many citations at 55,122;
    COPD (also not a particularly desirable field) has 38,132;
    HIV AIDS has 105,511;
    colon cancer has 98,222;
    breast cancer has 256,317;
    brain cancer has 138,861;
    RA has 115,019;
    lupus - which has not had a new drug approved in I think 20 years - has 66,901 (22, 219 for SLE - there are other forms).

    So there are at least 4 times as many papers even for fields which are not making good progress in the least. I think someone forgot to do his homework!

    I have seen someone else make a similar comparison but particularly noting recent papers, in which the disparity is particularly striking.
    Dolphin, Svenja, taniaaust1 and 4 others like this.
  16. Sparrow

    Sparrow Senior Member

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    I watched two speakers reply, and then couldn't watch any further (head does not like video). What I saw was entirely filled with side points, and didn't address the issues she had raised in the slightest. Her point was not whether CBT was useful for treating CFS (which is all they seemed to want to talk about, peppered with the side points of "ME patients are vicious," and "patients don't understand what will help them"). Her point was about analysis of data, witholding of data, changing measures of success, and definitions of "recovery". And I didn't hear a word about that. It's the kind of display that makes me wish that I was there, and had the opportunity for a short rebuttal after they spoke. I would love to ask those fellows a few intelligent questions.

    For those who watched further, I don't suppose they got to it eventually...?
    Dolphin, taniaaust1 and Valentijn like this.
  17. alex3619

    alex3619 Senior Member

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    http://www.parliament.uk/business/p...todays-lords-debates/read/grandcommittee/965/

    That is the transcript. The arguments raised were not addressed, instead general and weak counter arguments were used. This is spin in action, and coming from multiple parliamentarians it is very disappointing.

    All made a point to state, clearly, that CFS/ME is a serious illness. Then they claim all sorts of general platitudes and support for the PACE trial, mention a few facts (many of which are wrong or highly distorted versions of the truth) and then pass the debate to the next speaker.

    " She also asked whether the trial data could be reanalysed. As she will know, there are ethical and legal barriers to releasing data to a member of the public without consent when these data contain medical information that might identify the patient."

    This claim by Baroness Northover is an example of the kind of thing I see all the time: technically correct, highly misleading, total spin. It would probably take a data processing operator less than an hour to assign everyone numbers instead of names. Patient privacy would then be assured. The data can then be re-analysed. This information should already have been public, the data should already be in a form to be made public, this is not a valid claim. Indeed, the actual request is not to make it public, but to make it available to independent experts for re-analysis.

    Lord Winston:

    "There are many other names, but these are very prestigious departments of medicine. Effectively, they all come to the same conclusion; namely, that at the present time, the best treatment is almost certainly along the lines of cognitive behavioural therapy."

    This is highly misleading. Many experts think the psychiatric research is just wrong.

    "What is different about the PACE study is that it is a detailed, controlled study which has extremely rigorous entry into it." Rigorous entry? Seriously? I laughed out loud when I read this. I am still chuckling over it. How can he be serious?

    "It means that it is extremely comprehensive, so there are very good data. It looked at a series of issues about treatment and it seems pretty clear to me that cognitive behavioural therapy is effective in something like one-fifth of patients, which is a bit more successful than the noble Baroness claims."

    It would have been more comprehensive, and have physical evidence to back (or refute) their claims if they retained the actometers. This one-fifth claim is also highly debatable.

    It seems there are many errors and distortions in the replies. Maybe we should pick it apart, or maybe we should move on to other things.

    This is what I call a whitewash: political spin to maintain the status quo.

    Bye, Alex
  18. barbc56

    barbc56 Senior Member

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    Oi, I could not understand the British Accent. It's a processing problem not only for accents but sometimes Engllish. On top of this,of this without earbuds, the sound on my computer is too low and I can't find them. (violins playing in the background);)

    Will there be a YouTube video with closed caption? I wouldn't bother with transcribing her video, at least for me, as I can probably guess what she says.

    Barb
  19. barbc56

    barbc56 Senior Member

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    Alex, our posts crossed in in cyberspace. Thanks for the link.
    Barb
  20. WillowJ

    WillowJ Senior Member

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