PACE Trial and PACE Trial Protocol

Discussion in 'Latest ME/CFS Research' started by Dolphin, May 12, 2010.

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  1. alex3619 Senior Member

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    alex3619, Jul 25, 2012
    #1881

  2. Simon Senior Member

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    Monmouth, UK
    I think this is relevant to some of the debate here on the reliability of fatigue scores, particularly for one individual over time (relevant to PACE's measure of "% improved"):

    RELIABILITY OF PHYSIOLOGICAL, PSYCHOLOGICAL AND COGNITIVE VARIABLES IN CHRONIC FATIGUE SYNDROME AND THE ROLE OF GRADED EXERCISE. Wallman 2005

    from the abstract:
    Simon, Jul 25, 2012
    #1882 Last edited by Simon, Jul 25, 2012
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  3. Dolphin Senior Member

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    Dolphin, Jul 25, 2012
    #1883
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  4. Enid Senior Member

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    Can we get down to real science please (sans mumbo jumbo of psyches). Medics and Scientists - primarily Medics (as always) and the Canadian definition.
    Enid, Jul 25, 2012
    #1884 Last edited by Enid, Jul 25, 2012

  5. Bob Senior Member

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    If you are looking for real science, then I think maybe it's the wrong thread, Enid! ;)
    You can be guaranteed that, any thread starting with the words "PACE Trial", is going to highlight a certain amount of "mumbo jumbo"!
    But, still, the PACE Trial was very helpful, in that it finally destroyed all theories relating to CFS being caused by psychological issues and/or deconditioning. It's just a shame that it took £7m for the psychiatrists to find that out, when everyone else had been telling that all the time. It's also a shame that they don't listen to their patients, because if they did, then they would have known about the nature of CFS/ME. And it's also a shame that the results of the PACE Trial are not widely known, yet.
    Bob, Jul 25, 2012
    #1885 Last edited by Bob, Jul 25, 2012
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  6. Enid Senior Member

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    Well you go your way Bob - I go mine and despite you will fight for the real recognition of this disease - myalgic encephalomyaltis - blighting the lives of millions until the medical researches (mounting) understand fully. PACE and it's aftermath is pathetic.
    Enid, Jul 25, 2012
    #1886

  7. Bob Senior Member

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    Enid, you have completely misunderstood my post, or I misunderstood yours.
    We're on the same side Enid!!!
    Bob, Jul 25, 2012
    #1887 Last edited by Bob, Jul 25, 2012

  8. Enid Senior Member

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    Then lets get on with it - the fight is for correct recognition of a disease suffered by millions, coming thanks to global researches, revealed pathologies, and in which this pathetic United Kingdom PACE is of no consequence. I have no interest in misunderstanding - I have interest in the scientific/medical world unravelling - not and a long way off here (bound as they are into Freud and something approaching witchcraft).
    Enid, Jul 25, 2012
    #1888 Last edited by Enid, Jul 25, 2012

  9. Bob Senior Member

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    @Enid, maybe you aren't aware of the purpose of this thread.
    We aren't supporting the PACE Trial, but have been analysing it in order to highlight its weaknesses.

    When we found out what the actual results of the PACE Trial are, rather than what's been reported in the media, it turned out that only 13% of participants responded to treatment with CBT and GET. The other 87% did not respond to treatment with CBT and GET.

    That's no surprise to all of us, as we know the nature of CFS/ME, but it's very useful evidence to have.

    Also, CBT was demonstrated as being clinically ineffective at improving physical disability, something that the authors have hidden from us, and GET wasn't much better than CBT.
    Also, there weren't any 'recoveries' as a result of CBT and GET as far as we yet know. (Contrary to media reports, those results have not been published.)

    If doctors are blaming patients for their illness, and some patients are being forced to undertake GET, then it's useful to know that CBT and GET are not effective.

    The PACE Trial also gives us extra proof (not that we really needed it) that CFS is not a psychological disease, and is not a result of deconditioning.
    Bob, Jul 25, 2012
    #1889 Last edited by Bob, Jul 26, 2012

  10. Enid Senior Member

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    I'm aware of it all and sign off. I knew 12 years ago it was not "psychological" - if the pathethics in the United Kingdom can catch up there is some hope - I fought out of A & E Dept 12 years ago and wait to hear this medical establishment has at last found their common sense. Oh and more education in real medicine they lack. Right over to someone speaking common sense here. Ah gee am I on the wrong thread - never. And how nice you are correcting me. Are you perchance a Prof of Neurology/RadiologyPaediatics (my own family) ???
    Enid, Jul 25, 2012
    #1890 Last edited by Enid, Jul 25, 2012

  11. Bob Senior Member

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    Honestly Enid, you've misunderstood my post. My humour just didn't come across well. I only meant what I said politely and respectfully.
    I was just agreeing with you that there isn't much real science involved when it comes to the PACE Trial.
    If you've been offended by anything I've said, then it's just a misunderstanding, I promise you, as I didn't mean any offense.
    I have a lot of respect for you Enid.
    Bob, Jul 25, 2012
    #1891 Last edited by Bob, Jul 25, 2012

  12. Enid Senior Member

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    I misunderstand nothing and fail to see the pathetics of the mumbo jumbos as humerous. Look they are ignorant why do we bother as they grovel to keep up. We know more than they now. Seems like having to watch these wierdos having to go back to school and grow up.
    Enid, Jul 25, 2012
    #1892 Last edited by Enid, Jul 25, 2012

  13. Esther12 Senior Member

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    The work of psychosocial researchers has a profound affect upon the way in which many patients are treated, largely because almost the only people who take the time to really read it are those keen to make money from the provision of psychosocial treatments. The problems that people have been uncovering here are important, and no-one else is interested in critically examining this sort of work. Most GPs, civil servants, politicians and journalists will work on the assumption that they can trust the claims in a paper, and do not need to check citations, check the use of outcome measures, check deviations from the protocol, and so on.

    Increasing our understanding of how the results from PACE have been spun allows us to explain in a rigorous way why we disagree with the interpretation of results offered by White, Chalder, Crawley, and others keen to promote CBT/GET for CFS.
    Esther12, Jul 25, 2012
    #1893

  14. Enid Senior Member

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    Yes agree Esther - and spinning is the name of the game for the psychos. It is a deep problem embedded in medicine (such that I personally had to escape 4 junior Docs in A & E producing a psychiatriist). Where to begin when this lot hold such sway over the collective medical mind in the UK. We can reveal the pathetics of a PACE - it's flaws, it's departure from real medical/scientific findings and researches, will expose this lot for their willing ignorance - ducking and diving with a legacy of Freudian c.... behind them - no contest with 21st century medicine.
    Enid, Jul 25, 2012
    #1894 Last edited by Enid, Jul 25, 2012

  15. Esther12 Senior Member

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    I don't think that you and bob were disagreeing about anything real then, as he was just playing about.

    Hope all are well. I just looked back over the Bowling SF36-PF standard deviation figures, and can't see a way of calculating them for all the population, rather than just those who registered their sex. The SD per age group cannot really be pooled, as they are all for different means. (This is a minor point, which just undermines something I suggested could be significant a few pages back, and everyone else wisely chose to ignore me).

    There's already more than enough to make it clear how farcical it is to try to claim that an SF36 PF score of 60 is normal, or indicates recovery and cure.
    Esther12, Jul 25, 2012
    #1895 Last edited by Esther12, Jul 25, 2012

  16. oceanblue Senior Member

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    SF-36 and Chalder Fatigue scores for healthy age & sex matched healthy controls to CFS patients

    There's been some discussion about how appropriate were the 'population norms' used by PACE for determining how many CFS patients were within the normal range. So I was interested to see some SF36/Chalder data from a 2005 study co-authored by Peter White that- quite appropriately - chose to compare CFS patients to age, sex & BMI matched healthy but sedentary controls. Here's what they found:

    SF-36 Physical Function score:
    CFS patients= 47.5 (27.5-65)
    Controls= 95 (90-100)

    Chalder Fatigue Scale score
    CFS= 11 (9-11)
    Controls=0 (0-2) nb Bimodal scoring, 0 in bimodal is <=11 in Likert scoring

    Note that scores are given as Median (Interquartile range), not means as the distributions are highly skewed so non-paramateric stats are appropriate (median, IQR) rather than parametric ones (mean, SD). The PACE trial inappropriately used parametric stats - not sure how that got past the two MRC biostatisticians on the paper. Here's a comparison between the medians from the 2005 (Healthy, age-, sex- and bmi-matched to CFS patients with a similar profile to those in the PACE Trial) and the PACE means (using populations that made their data look good).

    SF-36
    PACE reference population: 84
    2005 Study matched controls: 95

    Chalder (likert scoring)
    PACE reference population: 14.2
    2005 Study matched controls: <=11

    spot the difference...
    oceanblue, Jul 26, 2012
    #1896
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  17. Dolphin Senior Member

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    Dolphin, Jul 26, 2012
    #1897

  18. user9876 Senior Member

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    I assume this is one of the reasons why they have refused to release the trial steering committee meetings. Although I think it demonstrates a lack of integrity for the statistisions and a serious blow to the reputation of the MRC and their stats unit.

    The FINE trial also quotes means and standard deviations. I notice that their statistition doesn't include the BMJ publication on his web page. I wonder if this is an indication of ignorance or shame.

    I'm not convinced that even quoting medians and percentiles is valid for the chalder fatigue scale since it is an amalgamation of 3 or 4 different things hence is worse than being skewed.
    user9876, Jul 26, 2012
    #1898

  19. alex3619 Senior Member

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    With regard to the Glickman-Simon & Tenkku
    paper in post 1897, here is a quote:

    "Advocates for sufferers of chronic fatigue
    syndrome have long stressed the
    value of adapting to the condition by
    learning to pace one’s activities. This trial
    demonstrates the advantages of the alternative
    philosophy underlying graded exercise
    and cognitive behavioral therapies,
    which encourages patients to (sensibly)
    push past their perceived limitations."

    They seem unable to tell the difference between adaptive pacing and pacing. The deliberate choice of names is confusing the issue. I do not think this was accidental, just as I do not think that the PACE researchers choice of definition for "normal" was simply a mistake.

    Bye, Alex
    alex3619, Jul 26, 2012
    #1899
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  20. user9876 Senior Member

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    The problem is that they are reading and summarising papers. They implicitly trust them since they have gone through a peer review process. This is the problem when journal editors defend what they have published rather than thinking about it.
    user9876, Jul 26, 2012
    #1900
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