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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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'Recovery' from chronic fatigue syndrome after treatments given in the PACE trial

Discussion in 'Latest ME/CFS Research' started by Sam Carter, Jan 31, 2013.

  1. Graham

    Graham Senior Moment

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    No: once people have finally cottoned on to the truth, the PACE team will take their skills into investment banking and cure the ills of the economy.
     
  2. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I agree entirely, while I remain doubtful about CBT/GET being a source of significant harm, and there is some likely benefit to some M.E/CFS patients in some circumstances, the way that the PACE, FINE etc monolith is progressing is IMO profoundly harmful to a science referenced NHS.
    Just so everyone is clear there is not a formal process of 'franchising' rather it is an effective franchising within the bastardised NHS 'internal market' process.

    Buying into the stats is a part of this 'shadow franchising' although the commissioning level managers will not be required to demonstrate effectiveness of a treatment, that will remain the responsibility of the service level contractee. The local commissioning bodies will have little in way of resources to check effectiveness and will be reliant on the service providers own data (which in the case of a PACE model CBT/GET provision would very likely use the PACE etc, statistical analysis) with the primary arbiters of effectiveness being the NHS Commisioning Board and NICE (don't be fooled by Government claims of power devolving to local commissioners !).

    For CBT/GET delivery, unless there is a very dynamic group of local commissioners, the development/expansion within NHS Trust hospitals of Liaison Psychiatry services or seperate private sector contractees, will be the most likely models. The only general limitation to this isthe massive cuts (sorry efficiency gains) the NHS is having to absorb, however this is leading to much more energetic competition so active selling of CBT/GET on the back of PACE is likely to be underway.

    IVI
     
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  3. user9876

    user9876 Senior Member

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    I was joking that the comissioning managers could use the same dodgy methods to justify their actions.

    In days of cut backs I can't imagine commsisioning groups starting up new services without a significant patient demand which I don't sense.
     
  4. Sam Carter

    Sam Carter Guest

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    How useful is a clinically useful difference?

    For each treatment group significantly more people improved by a clinically useful difference (2 points for fatigue and at least 8 points for physical function) than rated themselves "very much better" or "much better" on the CGI scale. This suggests that it was possible to improve by a CUD and either not notice any improvement or only rate yourself "a little better" which the protocol defines as "non-improvement"[*].

    If I remember correctly the economic calculations in McCrone were predicated on a CUD actually representing a genuine and meaningful improvement.

    Lancet 2011: improved by a clinically useful difference

    ........%
    APT 42 64/153 participants
    CBT 59 87/148 participants
    GET 61 94/154 participants
    SMC 45 68/152 participants

    Psychological Medicine 2013: Overall health change CGI 1 or 2
    .........%
    APT 30 (48/158)
    CBT 40 (62/154)
    GET 40 (63/156)
    SMC 25 (40/158)


    [*] p51 of the full trial protocol
    """
    The self-rated Clinical Global Impression (CGI) change score (range 1 - 7) provides a self-rated global measure of change, and has been used in previous trials. As in previous trials, we will consider scores of 1 or 2 as a positive outcome ("very much better" and "much better") and the rest as non-improvement.
    """
     
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  5. Sam Carter

    Sam Carter Guest

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    Psychosom Med. 2008 Feb;70(2):205-13.

    A randomized controlled trial of cognitive behavior therapy for multiple sclerosis fatigue.

    van Kessel K, Moss-Morris R, Willoughby E, Chalder T, Johnson MH, Robinson E.

    ...

    To define clinically significant improvement in fatigue, a normative approach was used (27), which assessed whether patients’ fatigue levels after treatment were equivalent to fatigue levels in healthy people. In order to do this, we collected Fatigue Scale data from a matched healthy comparison group recruited during baseline assessments. ...

    To assess clinically significant improvement, fatigue scores for the MS samples were compared with baseline data from the matched healthy comparison group at each time point. These comparisons are represented graphically in Figure 2. The mean Fatigue Scale score for the healthy comparison group was 12.49 (SD 2.86).

    ...

    Potential Limitations of Study...

    An additional limitation was that outcome assessment in this study depended on self-rated outcome measures. No objective measures exist for subjectively experienced fatigue, so we chose reproducible measures that are sensitive to change. However, self-reports are amenable to response bias and social desirability effects. Future studies could also assess more objective measures of change such as increases in activity levels and sleep/wake patterns using actigraphs or mental fatigue using reaction time tasks.



    Lancet. 2011 Mar 5;377(9768):823-36.

    Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial.

    White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, DeCesare JC, Baber HL, Burgess M, Clark LV, Cox DL, Bavinton J, Angus BJ, Murphy G, Murphy M, O'Dowd H, Wilks D, McCrone P, Chalder T, Sharpe M;

    In another post-hoc analysis, we compared the proportions of participants who had scores of both primary outcomes within the normal range at 52 weeks.This range was defined as less than the mean plus 1 SD scores of adult attendees to UK general practice of 14·2 (+4·6) for fatigue (score of 18 or less) and equal to or above the mean minus 1 SD scores of the UK working age population of 84 (–24) for physical function (score of 60 or more).

    (I might have gone a bid mad with the bolding...)
     
  6. In Vitro Infidelium

    In Vitro Infidelium Guest

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    IMO the same type of statistical justification as used to advance the PACE agenda is very likely to find its way into all parts of NHS delivery, unless energetically resisted.

    As far as patient demand is concerned, I have no optimism that it will have anything more than a very limited effect, evidenced geographically, only where local conditions confer particular empowerment to patients or percieved advantage to the commissioning group. There are number of circumstances where new services will be initiated without any patient demand whatsoever. The disasterous policy of private sector 'in house' competion, started under Blair ( £millions spent on parallel services that were underused but had to be paid for as full use because of contract agreements) is set to continue under a new guise which means that the CCG's have no choice but to prefer a private sector bid on terms defined nationally - this would include CBT/GET.

    The CCGs will be target driven and new services (provided at the cost of existing services) will be introduced on the basis of meeting targets - patient demand will in many circumstances have little impact because the contracts (whether with an NHS or private provider) will be deliminated by costs matched to target delivery objective. Patients will need to be assertive and articulate if they are to have any influence - cutting a stubbornly unresponsive illness group by 25% is a seductive promise and disuading CCGs from embracing at face value will likely need some fancy footwork.

    IVI
     
  7. Graham

    Graham Senior Moment

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    I take it all back, In Vitro. The PACE team won't need to move into banking to earn their crust, will they?
     
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  8. Stukindawski

    Stukindawski

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    It could be argued that a stricter diagnosis might rub out that 25% just as effectively, but, in reality does it work out that way? I wonder if the CFS diagnosis is a mainline to cost-saving and a 'tacit-agreement' has somewhat naturally occurred in the system.
     
  9. user9876

    user9876 Senior Member

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    Just to bold another bit from Sam's post. In the lancet they claim that the normal range was a post hoc analysis, since this is used within their definition of recovered persumably the definition of recovered is also post hoc.
     
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  10. kaffiend

    kaffiend Senior Member

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    It seems easy to make a few legitimate* criticisms of the paper. A reviewer should have asked for (at least) the following:

    1) The Post-hoc definition of recovery is not adequately justified. This new definition should be validated in a separate study before its use here.

    2) The paper should contain supplementary material reporting outcome measures under alternative definitions/constructions of recovery. Many papers nowadays have supplementary sections two to three times the length of the main article.

    3) Section 5 of the PACE trial protocol stated that comparisons of (i) fatigue and (ii) disability would be compared between the treatment arms. The self-report SF-36 scale alone is inadequate for measuring disability. Return to work/study rates, follow-up actigraphy, step-test and 6-minute walking test must be included to draw meaningful conclusions about the efficacy of each treatment arm. The authors' justifications for excluding these objective measures are unconvincing.

    4) Since all recovery data are derived from self-reports, how did the authors control for social desirability bias? Was there equivalence across treatment arms with regard to the familiarity and exposure time between assessors and patients? Could the rapport established between CBT counselor and patient influence a patient's self-reports?


    *Edit: I don't mean to imply that other criticisms aren't legitimate; I'm trying to think as a reviewer of the paper in its current form and avoid the illness definition (e.g., Oxford, London, CDC) trap.
     
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  11. Hip

    Hip Senior Member

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    Does anyone know if there are any official channels or institutions for report cases of scientific misconduct or scientific fraud?

    This PACE publication need to be brought to their attention.

    When researchers conclude in their study's abstract, as they did in the PACE study publication, that:

    Conclusions. This study confirms that recovery from CFS is possible, and that CBT and GET are the therapies most likely to lead to recovery.

    then you are deliberately perverting the truth; otherwise known as lying.

    The deceptive trick employed by the authors of this study is this: these authors completely redefine the meaning of the word "recovery" using abstruse semantic subtleties within body of the text of their study, so that, under this totally new meaning of the term "recovery", many ME/CFS can be said to be, ahem, "recovered" following CBT/GET treatment.

    However, when an individual just reads the study's abstract, there is no indication that the word "recovery" used therein has been totally redefined by the authors, and thus the causal reader will erroneously assume that the word "recovery" just carries its normal English meaning, which in the dictionary is defined "a return to a normal state of health, mind, or strength".

    Thus many people reading this PACE study authored by White, Goldsmith, Johnson, Chalder and Sharpe will be led to erroneously believe that CBT/GET can return a ME/CFS to a normal state of health, which is not the case at all.


    I think this dishonest, deceptive trick used by the authors is a genuine case scientific misconduct and fraud.

    If you are going to redefine your terms and the words you use, you need to make sure that the precise definitions of these terms are clearly given, so that there can be no misinterpretations.

    It seems apparent that the authors of this PACE study actually want their completely redefined word "recovery" to be misinterpreted. Thus, this is not a mistake by the PACE study authors, but is in fact fraudulent.

    Thus, as a representation of data that is effectively scientific fraud, this published PACE study needs to be reported.

    So I ask again if anyone knows of the correct channels through which to report scientific misconduct or fraud?

    IVI, you may know about this.

    I personally would like to write to report this misconduct.

    And this PACE study publication certainly needs reporting to an appropriate body within the NHS, otherwise busy NHS doctors, who only have time to scan study abstracts, may read this PACE study, and then get the completely incorrect impression that GET/CBT can actually cure ME/CFS, and furthermore, these busy doctors will get the mistaken impression that ME/CFS is just a trivial condition easy fixed by a bit of exercise and a few chats with a CBT therapist.

    This PACE study publication is serious scientific fraud that needs to be brought to attention, and the authors to justice.
     
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  12. Dolphin

    Dolphin Senior Member

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    One way, but not the only way, to get problems with papers noted is to have letters to the editor published. I would encourage as many people as can, to try this. Even if your particular letter doesn't get published, the letter can be used on other occasions and could, for example, be highlighted on a thread collating all the responses here.
     
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  13. alex3619

    alex3619 Senior Member

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    This is a point I have made repeatedly about a lot of the psychogenic literature. Its a pattern with many papers, not an isolated instance. There is planned to be a large section in my book on just this issue. They redefine a term, then use the redefined term liberally and without sufficient care. Anyone who does not read closely can then fail to disambiguate the standard and abnormal meanings of the words. This is the essence of spin, of pseudoscience (its a hallmark of pseudoscience) and is not scientifically justifiable. This practice is anti-scientific. Have you read my Bluk blog?
     
  14. Hip

    Hip Senior Member

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    I did not know that this deceitful practice of redefining words was widespread in the psychogenic literature; I assumed it was just deceptive device used by the Wessely school in their ME/CFS research. Are there any particular areas of psychogenic literature in which this deceitful practice is most prevalent?

    When is your book going to be published, Alex? There is certainly a need for this scientific misconduct to be brought to light. It would also be good if someone wrote a short article on this scientific misconduct in say Scientific American, the New Scientist, the Guardian or the New York Times.

    I just read your Bluk Factor blog post now. Very good!
     
  15. alex3619

    alex3619 Senior Member

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    Hi Hip, unfortunately my book will probably be a 1000 page report, and will be released for free online ... in about nine years. There is a LOT of work to do. I am one year in and have only now scoped the content of the evolving report, and am working on building up my skill sets for the kind of analysis I want to do. So I write blogs. Key ideas from my book are appearing in my blogs, and will continue to do so. This helps me develop my ideas, improve my writing skills, and puts it out there in a more timely fashion. It will also prove useful should I never be able to finish my report.

    The very use of the word "functional" and the way it is promoted is a deliberate use of ambiguity, playing on the mulitple meanings of the word. I think a case can be made for the idea that redefinition with ambiguity is a standard practice of psychogenic medicine. As patients catch on that a label is psychobabble, they change the label. We used to have hysteria and neurasthenia. Both fell out of favour. Then we had psychosomatic medicine, and that became unpopular. Conversion disorder is an old label that seems to have survived well. Somatization is out of favour, so now we have somatic syndrome disorder or something. Given that somatic means of the body this label could deceive the unwary.

    The whole notion of psychogenic medicine is based on ambiguity and logical fallacy. To see one part of that, you might like to read my blog here: http://forums.phoenixrising.me/index.php?entries/the-witch-the-python-the-siren-and-the-bunny.1149/

    A lot of this started with Charcot and Freud. Charcot is suspected of using actors to fake some of his demonstrations, and Freud has been caught outright lying about at least one of his patients.

    Semantic game playing is a lot of what they do. Under one interpretation its literally correct, and under the more common interpretation it supports their views but is not technically accurate. Building up a compilation of such language is part of what I am aiming for in my book, but the real analysis for that has not started yet.

    I wrote The Bluk Factor as an example of how to disambiguate. Change the term in question - if the reasoning is still valid using a made-up word, then the reasoning may be OK. If it no longer makes sense, then the original word is used ambiguously and the argument is probably not rational.
     
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  16. Hip

    Hip Senior Member

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    I just found this this passage in Wikipedia: Scientific misconduct — Consequences for those who expose misconduct


    In particular it says: "There is no international body where a whistleblower could give his concerns. If a university fails to investigate suspected fraud or provides a fake investigation to save their reputation the whistleblower has no right of appeal. High profile journals like Nature and Science usually forward all allegations to the university where the authors are employed, or may do nothing at all."

    Looks like exposing the Wessely school scientific misconduct will not be an easy task.
     
  17. Hip

    Hip Senior Member

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    Alex, or anyone else, do you have any more good individual examples of this blatant deceptive trick of redefining words, in published psychogenic studies and literature (particularly from the ME/CFS literature).

    If I can get say 5 good examples, I will try to get a letter published in a newspaper or science journal. And I may also set up a web site specifically exposing this fraud of deliberately misleading word redefinition that these psychologists have engaged in (I am good at getting web sites to appear in the top position of a Google search).
     
  18. Dolphin

    Dolphin Senior Member

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    Good you are enthusiastic on this. :thumbsup:

    It's easier to get letters published in a journal in reply to a particular paper than trying to get a collection on different papers published.

    This article can be got at: http://journals.cambridge.org/PSM . For anyone who takes the time to read it, especially after reading this thread, you might spot more than one example that frustrates you within the same paper and could be referred to in a letter.

    Anyway, just trying to encourage people on this, but if people can achieve things in other outlets, that's great too.
     
  19. alex3619

    alex3619 Senior Member

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  20. Valentijn

    Valentijn Activity Level: 3

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