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Psychosocial chapters from Ciba Foundation Symposium 173

Discussion in 'PsychoSocial ME/CFS Research' started by Lucibee, Sep 13, 2018.

  1. Lucibee

    Lucibee Senior Member (Voting Rights)

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    I'm currently working my way through this tome, so thought I'd start a thread on it so that anyone else who has read it (and those who haven't) can join in and discuss it here.

    The symposium was held at the Ciba Foundation, London, 12-14th of May in 1992.

    The publisher's description of the book is that it "documents the latest results and opinions on the causes and possible cures for this disorder. Coverage includes retroviral involvement, immunity, pathophysiology and pharmacological treatment of chronic fatigue syndrome."

    But this description is slightly inaccurate given the proponderence of anthropological, psychiatric and psychosocial researchers at the symposium.

    I found the discussions very enlightening, as this seems to be the time that the psychosocial academics were beginning to take hold.

    It's difficult to know how to summarise the individual chapters and their adjoining discussions, because there are so many assumptions being made by the speakers - and sometimes it is difficult to know exactly where they are coming from (and often, where they are going to).
     
  2. Lucibee

    Lucibee Senior Member (Voting Rights)

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  3. Medfeb

    Medfeb Established Member (Voting Rights)

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    Thank you for posting on this. I agree this book is a really useful lens to look at a pivotal point in the history of this disease

    . I agree - the biomedical discussion is overwhelmed by the other researchers.

    I think it might have begun to take hold in the late 1980s with some of Wesseley's papers but this seemed to fairly cement it in place. If I remember, its not all that long after this conference - 1995 - that Fukuda and Gantz published management recommendations that included CBT and GET.

    What stunned me the most in these proceedings was Sharpe's acknowledgement in his article that there is a lack of theoretical rationale for non-pharmacological treatments. So he just made up the gospel with a wave of the hand - "It is possible to construct a hypothetical model by assuming the aforementioned factors [e.g. reduced activity, illness beliefs, depressed or anxious mood] interact in self-perpetuating vicious circles (Wesseley et al 1989)."
     
  4. Lucibee

    Lucibee Senior Member (Voting Rights)

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    At the end of the discussion after his paper on the "Clinical presentation of CFS", Komaroff concludes:

    "I could sum up by saying that I suppose that I tried to enter a note in favour of the conventional biomedical model, only to then reject that model!"

    Those who try to present evidence in favour of it are simply largely ignored in discussions. It's very disheartening.
     
    Last edited: Sep 14, 2018
  5. Lucibee

    Lucibee Senior Member (Voting Rights)

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    There is something so desperately wrong with the way that this has been approached from the outset.
    This obsession with "models". It is bizarre and extremely unhelpful.

    Science is a set of tools. Not models.

    A biomedical approach is a set of tools for exploration. If you can't find answers, you keep looking. You might change perspective, but you never abandon your methods. That would be like discarding your eyes because they can't see in ultraviolet. You might add new ones (tools, not eyes!), but they are always built on what went before.

    The biggest mistake is to see it as a face-off between "competing models" - biomedical and psychosocial. It's not. They are not. They are complementary approaches, and they deal with different aspects of the same thing. One provides answers where the other one may not, but you need both to understand fully. And not just "both". There are many other ways of "seeing" that we have yet to discover.

    It's a misunderstanding of the scientific method. Scientific models, as such, are there to be tested. To be broken. Those "models" are not neat, packaged, irrefutable explanations. And yet that is what we have been left with. Neat, packaged, irrefutable explanations that are practically useless. Because they don't work!
     
  6. Sean

    Sean Senior Member (Voting Rights)

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    Compare and contrast with Sharpe's recent attempts to deny that PACE was based on a 'model'.
     
  7. arewenearlythereyet

    arewenearlythereyet Senior Member (Voting Rights)

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    I haven’t read the book, but from the excerpt immediately the phrase about “mother’s” jumped out. It’s like it was written by somebody a little bit out of touch with how ‘Motherhood’ may have changed a little since the 1950’s? I’m not sure which mothers in the 1990’s were staying up late at night sewing? (Unless it was a hobby for pleasure and to unwind). I think cheap replaceable clothes started happening at the end of the 1970’s?

    I guess they could have referenced a large sample from the post war rationing period or probably more likely simply lazily overlaid their own ill conceived and outdated prejudiced views of what a mother should be in their interpretation?

    Unfortunately people with these old fashioned views still walk amongst us today ...I think they hide these unrealistic views by lumping them under “traditional family values”, when really they are so far removed from today’s economy that they’re laughable in their naivety.

    People like this live in a kind of fantasy land detached from reality and are really not the best people to be doing attitudinal research.
     
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  8. Lucibee

    Lucibee Senior Member (Voting Rights)

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    One of the early chapters is by Peter Manu et al., who looked at clinical epidemiology and aetiological classification in CFS. His prospective study looked at "the medical and psychiatric diagnoses that have an aetiological role in chronic fatigue". Patients were those who presented to their medical centre in Farmington, Connecticut (~400 of them).

    His conclusions were as follows:
    In the Discussion, Lloyd is skeptical of the results and asks:
    Despite what he says, it seems he was firmly of the belief that depression is the main cause of chronic fatigue, rather than a sequela (or confounder). I don't think he was looking at 'the wrong patients', as he notes that, "Our patients [believe] that their fatigue has a physical rather than a psychological cause, and more specifically that a viral infection was responsible for their symptom complex". So not only are they depressed, but they are somatizing too.

    Throughout the symposium, he is the one who downplays any biological evidence and champions psychosomatic explanations. His paper seems to be strongly influenced by Wessely & Powell's 1989 study on post-viral fatigue.
     
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  9. chrisb

    chrisb Senior Member (Voting Rights)

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    O chestnut-tree, great rooted blossomer,
    Are you the leaf , the blossom or the bole?
    O body swayed to music, O brightening glance,
    How can we know the dancer from the dance?
    W. B. Yeats
    'Among school Children'

    If that has you puzzled, it had the same effect upon me. Those are the first lines of the paper by Norma C Ware referred to above, and makes clear the problem with this sort of work. Illness is seen as metaphor and allegory. One can just about see the point being made, but not necessarily why it should be made in this manner, in this forum. An analysis available on the internet at http://ireland.wlu.edu/landscape/Group3/sectionfour.htm says

    In the final stanza Yeats recognises that although people are the sum of their separate parts, life is an amalgamation of actions. Instead of viewing life in parts, like "the leaf, the blossom or the bole", Yeats argues for one united view of life. Like one's inability to separate" the dancer from the dance" one cannot separate life from death. These two parts are not independent. Instead they are one in the same. No-one has life without death, so one should not view them independently, choosing to takes all areas of life in one wide swath.

    It all seems a bit airy-fairy, arty-farty. But this is the way of CFS. Not sure whether syphilis researchers quote Blake's "O rose, thou art sick", or plague researchers "La Peste". Probably not. We are in a special category worthy of artistic interpretation.

    In an earlier post on some other thread I alluded to the fact that we tend to see the BPS brigade as a peculiar (sic) British influence and ignore the encouragement which they received from the equally, if not even more, fanatical trans-Atlantic cohort.
     
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  10. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Further on in the discussion, it was noted that not all patients with 'chronic fatigue' had evidence of depression. So, Manu conceded that maybe they should revive the term "neurasthenia" for those patients with idiopathic "non-depressed, non-somatizing chronic fatigue", as Peter White had previously suggested (apparently).

    Wessely then brings up the issue of selection bias and reliability - although actually by 'reliability', he is talking about the reliability of patients' recall (ie, recall bias) rather than 'reliability' in a more general sense.

    Behan then interjects, and we get this exchange:
    Edwards clearly doesn't like where this is going so starts talking about religion!
    This tendency to steer discussions away from more biomedical topics is characteristic of exchanges throughout the symposium. I get the impression that Behan and others (Tyrrell, Lloyd) in the end just give up.
     
    Last edited: Sep 14, 2018
  11. chrisb

    chrisb Senior Member (Voting Rights)

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    Behan seems to have been in a minority of almost one. He did sometimes receive support, but the rational types were largely keeping their heads down.

    What does seem apparent is the obvious change in tone from the earlier publications on PVFS. The overall feeling one gets is that in the earlier works they were considering a specific illness of which fatigue was one symptom, now they are considering fatigue, wherever and whatever its manifestations. Its as though, when looking for a needle in a haystack, they chose to ignore the haystack and initiate a search of the farm.

    I am not sure am able at present to participate much in discussion on this book and its contents. The reference to Ware's paper did however lead me to an interesting discovery. I had deduced from the markings in my copy of the book that it had previously been owned by someone of psychiatric bent concerned with the mind-body dichotomy. I finally got round to googling the name in the front and find it belonged to someone late of Kings, the Maudsley, Edinburgh, and Chief Medical officer for Scotland one of whose papers is cited by Ware and the first page of which ( I haven't been able to get the rest from Sci Hub) could well have been written by Wessely-I wonder if he was an early influence on Wessely and Sharpe.

    https://www.sciencedirect.com/science/article/pii/0140673691908146

    RE Kendell 1991 Chronic fatigue, viruses and depression.
     
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  12. Kalliope

    Kalliope Senior Member (Voting Rights)

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    I haven't read the thread in detail, but so agree with you here.

    I have a feeling that some with a PS/BPS-approach have a tendency to accuse biomedical research for not taking into account that people consists of both body and mind. But that is simply not true!

    My impression is that the biomedical approach takes it even more into consideration as there are far longer traditions and stronger awareness for avoiding bias in biomedical research than in psychological/psychosomatic research.
     
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  13. ladycatlover

    ladycatlover Senior Member (Voting Rights)

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    It's a very long time since I read this book, but I do remember Edwards quoting several verses from the Bible, one of which was "pick up thy bed and walk". He misdiagnosed one of my friends with ME, later following a private MRI (she was desperate) it turned out she had MS. During the time of that misdiagnosis (many years) my friend wasn't able to get DLA, but as soon as diagnosis changed to MS she was given it.

    His main interest was muscular dystrophy. I applied for a tech job at his department when I was looking for work after my kids were both at primary school. Luckily I didn't get it! :laugh:
     
  14. Medfeb

    Medfeb Established Member (Voting Rights)

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    "Models are not neat, packaged, irrefutable explanations" Exactly! Models are used to organize thinking so you can test and refine. And they are based on what is already known about the science. But there's no science behind this and they never seriously attempted to test it.
     
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  15. Lucibee

    Lucibee Senior Member (Voting Rights)

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    @ladycatlover - That's really interesting. I'm looking at Edwards' chapter now (on Muscle histopathology and physiology). His conclusion is stark - that because the fatigue is mostly central fatigue, "Psychological/psychiatric factors appear to be of greater importance in this condition".

    Behan also noted the predominence of central fatigue, but comes to a completely different conclusion - that there is hypothalamic involvement. After all, central fatigue is a feature in MS and Parkinson's too, and you wouldn't describe them as "psychological" or even "psychiatric" disorders.

    Different ways of seeing...
     
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  16. Lucibee

    Lucibee Senior Member (Voting Rights)

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    Going back to Manu's comment about neurasthenia...

    Given the history of neurasthenia, as a condition connected with neuroticism (as Kendell notes in the Viewpoint cited by @chrisb ), this seems a terrible suggestion, and seems almost entirely designed to create more stigma, more confusion.

    Kendell's obit is here: https://www.thelancet.com/journals/lancet/article/PIIS0140-6736(03)12522-6/fulltext
     
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  17. Sean

    Sean Senior Member (Voting Rights)

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    And help them avoid having to admit they have no fucking clue what they are talking about.
     
  18. rvallee

    rvallee Established Member (Voting Rights)

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    We redid our calculations and we can now pronounce that the end of the world will not be happening last week, as we had inaccurately predicted, but will instead be occur in exactly 28 days, 6 hours, 42 minutes, and 12 seconds with near certainty.
     
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