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Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

Discussion in 'General ME/CFS News' started by Cheshire, Mar 5, 2019.

  1. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    We are in complete agreement about the issues you raise in this post - with the exception of some nuanced history of science that I will come to an a minute!

    I agree with you about the issue of misrepresentation that occurs in the BPS approach. I intend to make this central to whatever I present to the NICE committee. It needs to be carefully argued but there is a deep ethical flaw in service development and this has to be addressed.
     
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  2. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    It might be interesting to debate the evidence for this but I suspect it may not be quite as it seems.

    I have spent much of the last ten years studying the approach of the philosopher scientists of the seventeenth century to mind and body. What has become clear to me is that the present day distinction between mind and matter is actually very new and largely based on dumbed down schoolroom teaching that does not actually reflect fundamental science. What is new is the idea that there is some stuff called matter, based on 'mass' that may or may not be different from 'mind' or 'spirit'.

    Three hundred years ago 'mind', 'life' and 'movement' were much more synonymous. Anything that moved was alive and had mind or spirit. That might seem more a popular view than the view of refined science. However, the scientists of the Renaissance/Enlightenment were educated in Greek ideas (and often Indian and Chinese ideas) and they were well aware that the intuitive idea of matter contained a paradox. Macroscopic matter cannot be explained by microscopic or infinitesimal matter. You hit a contradiction. So people like Galileo, Descartes, Hobbes, Hooke, Leibniz, Newton, were all aware that 'matter' was more or less an illusion. Deep down everything must be 'spirit' in some sense.

    Descartes tried to identify a dichotomy in the way things work. In fact he identified a crucial dichotomy that persists in quantum physics. But in a sense Descartes great contribution was to show people how productive it could be to be specific enough to get things a bit wrong. Within 30 years of his death they had got it right.

    The present day concept of mind versus matter has a lot to do with a very short period around 1900-1925 when scientists seriously suggested that matter might be made of little billiard balls, or solar systems of billiard balls, despite the objections of the Greeks, who had largely been forgotten about. Then in 1927 billiard balls were completely abolished and everything was spirit again - Planck's units of action. But nobody told the schoolteachers.

    This may all seem a bit distant from our ME concerns but I think two things may emerge.

    Firstly, I suspect that the 'psychosomatisation' of illnesses stems mostly from the nineteenth century. The present day mind body split I think emerges as the 'natural philosophy' of Newtonian science forces a 'two culture' separation from religion-driven 'philosophy' (as we now understand philosophy) maybe focused in Germany following Kant and Hegel. Out of this emerge Freud, Charcot, etc. It is interesting that the East London MUS service employs German psychosomatic physicians even now.

    This is a gross oversimplification but it might be interesting to explore a bit more (probably on another thread).

    Secondly, there is the knotty problem of how you shift the popular culture, including the popular medical culture, towards a more useful analysis of mind and body that would show the psychosomatic view to be hot air. The problem with this is that I am pretty sure that a realistic understanding of mind and body involves moving to ideas that are so seriously counterintuitive that there is no hope of more than a tiny minority of people understanding them. They fly in the face of genetically programmed concepts of selves and persons. A counterargument to that is that they are not so distant from the ideas of the ancient Indian Vedas, which became standard teaching. But although Leibniz translated these ideas into a Western analysis and essentially gave us the complete solution almost nobody has understood Leibniz's writings.

    I think we may be back to the idea that to turn around the psychosomatic account of ME we need to be able to show its mechanism. We need the biomarkers and the pathophysiology. Whether that will leave MUS untouched in terms of IBS and so on I don;t know, but ME is a bit of a poster boy for MUS and if it turns out to be MES (medically explained symptoms) then maybe the whole house of cards really will fall.
     
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  3. Alvin

    Alvin Senior Member (Voting Rights)

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    Before the age of enlightenment unexplained phenomena were ascribed to God.
    I'm over simplifying slightly

    It will not. It will change everything for us when there is real research money put on ME and hopefully a treatment/cure someday but the PACErs have basically formed their own religion that is impervious to science, facts or rationality.
     
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  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Yes, and most of the scientists of the Enlightenment ascribed everything to God - because God was the name for everything and science was therefore the study of God's laws. I think that is probably the right way to look at it, as long as God is not thought of as remotely like an individual person.
     
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  5. Alvin

    Alvin Senior Member (Voting Rights)

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    Einstein certainly thought that way as he stated publicly but in the many examples of the church censuring people for behaviours contrary to God's teachings (such as Galileo) or worse when Europeans brought previously unknown and untreatable diseases to North America after Columbus and the "cure" was converting to God's religions
     
    Last edited: Mar 11, 2019
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  6. strategist

    strategist Senior Member (Voting Rights)

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    It's just one particularly popular medical superstition of our age. I think people will be able to recognize it as such if we keep pointing this out.
     
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  7. strategist

    strategist Senior Member (Voting Rights)

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    The cure for superstition is education, in the sense of giving the public the tools to recognize the psychosomatic narrative as being false.

    The psychosomatic narrative relies heavily on PACE-like clinical trials which through positive results appear to confirm that is some truth to the illness model.
     
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  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    Galileo's crime was to suggest that one could find out about God through experiment rather than only the Catholic Church being able to provide the information.
     
  9. Inara

    Inara Senior Member (Voting Rights)

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    Your post reminded me that the UN regularly critisize Germany (and I think UK) for their practice of incapacitation and forced treatment. Other human rights institutes do as well (like the German Institute for Human Rights). UN views discrimination (this includes incapacitation) against sick and disabled people, including people with psychological diagnoses, as a human rights violation; they also classify forced treatment as torture. Plainly speaking, incapacitation is the transformation of a human being into a piece of flesh of which it is assumed it has no will; this justifies the stripping off of human rights. Therefore it is not required to try to find out its will, and it is ok to do with a piece of flesh as you wish. Incapacitation is - re. to law - only possible if there is a psychological/psychiatric diagnosis. This shows that, today, the category "psych. illness" alone is already an ethical problem. (I am aware there are people who do not discriminate people who have a psych. diagnosis. Still, there exists an institutional discrimination.)

    If I consider what UN says about incapacitation and forced treatment - torture - I personally would say it is justified to call it a crime against humanity. (Institutionalized torture is part of the Roman Statute.) Indeed, personally, I would dare consider calling today's treatment of pwME (and more generally of sick people) a crime against humanity.
    It may be provocative.

    From my personal environment I know most people are absolutely fine with discriminating "mentally ill" people; they view incapacitation and forced treatment as justified. (They are also fine with discriminating sick people...)

    I want to make a comparison, being aware that it has its weaknesses: In Nazi Germany, the law didn't classify murdering a person of Jewish ethnicity (and Roma) as a crime. Of course it is. This was a carte blanche to mistreat Jewish and Roma people. Jewish people weren't viewed as human beings, but as some piece of flesh - they were declassified as human beings. It doesn't matter what German law said then, and it doesn't matter that people were fine with it, it still was genocide and a crime against humanity, and it was unethical.
     
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  10. Alvin

    Alvin Senior Member (Voting Rights)

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    Not very much unlike the PACErs, to them the truth is "proven" by their unshakable faith and science is a means to an end, if it confirms their beliefs they will use it, when it doesn't they doctor their results or how they do an experiment to get to the conclusion already provided by their faith.
    In both cases actual science takes a back seat to belief
     
  11. Inara

    Inara Senior Member (Voting Rights)

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    Looking at the past and present, my impression is also that psychosomatism etc. may have its origin in Germany. At least, it's omnipresent in Germany today.
     
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  12. Alvin

    Alvin Senior Member (Voting Rights)

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    Technically the field of psychology began with Fraud err i mean Freud
    We have never fully recovered from the cannonballs he lobbed

    Though i am sure humans have thought about behaviour and human nature since well before Plato.
     
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  13. Barry

    Barry Senior Member (Voting Rights)

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    Now doesn't that have BPS echoes.
     
  14. duncan

    duncan Senior Member (Voting Rights)

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    More like recipe instead of mechanism, but I'll give it a go:

    One part Voodooism
    One part Hawker
    One part Con
    One part Narcissism
    Two parts "Don't-Take-My-Stuff".
     
  15. Barry

    Barry Senior Member (Voting Rights)

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    I think there are cases (Voodoo especially) where people can be taken to a place, through deeply indoctrinated and constrained beliefs, whereby they can become seriously convinced of non-existent physical issues. Science should of course be far removed from such closed belief systems.

    The BPS issue seems to be that just because humans can be so misled, does not by any stretch of the imagination mean they are being.
     
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  16. ScottTriGuy

    ScottTriGuy Senior Member (Voting Rights)

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    The best Freudian slip of the day.
     
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  17. Alvin

    Alvin Senior Member (Voting Rights)

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  18. rvallee

    rvallee Senior Member (Voting Rights)

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    Which merits exploration as a form of regulatory capture.

    Basically:
    1. Researchers at the time did not make actionable claims, as the research was still early stages
    2. Psychosocial ideologues made extraordinary claims without ordinary evidence but were granted license as "experts" by being first to stake actionable claims
    3. Psychosocial ideology has since captured all attention, obstructing and sabotaging competing ideas by the mere fact of controlling the process as every competing idea is judged based on how it diverges from the dominant model, rather than on its own merit, even when those ideas long predated the psychosocial model
    Science is about the vigorous exchange of ideas with no preference or bias. Here instead competing ideas were shut down not by force of argument but instead by virtue of holding some veto powers by being the only "experts" who are listened to. Since non-experts have been granted monopoly license, they have been allowed to shut down genuine experts and serious discussion.

    Better ideas are supposed to replace old ones. Here the exact opposite happened: a completely made-up fictitious model replaced one that was as good as it could get at the time. And now the wrong idea holds veto power against reality, indifferent to how much suffering it creates and amplifies.

    This is the worst case scenario on all counts, it's worse for everyone, even the ideologues who will basically be dismissed as cranks once enough time has passed. All because extraordinary claims were allowed to be put into policy without so much as a bit of ordinary evidence. It's as fundamental a problem as it gets.
     
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  19. Snowdrop

    Snowdrop Senior Member (Voting Rights)

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    I agree generally with your post @rvallee and wanted to highlight the part in bold.

    They may be indifferent but I suspect procuring people to go through their paces with this treatment gives them some satisfaction in a way they chose to be unaware of.

    IMO suffering is intentional as part of the rehabilitation process. It's the newish 'no pain-no gain' attitude that I can only presume they ascribe to themselves (and doesn't necessarily have to be physical pain). Our aversion to getting well is because we are unwilling to experience a little pain for the gain. This is the bullying. They expect this of themselves and somehow feel the need to ensure that others do likewise and that is the attraction of their profession --getting people to buck up and get on with it.
     
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  20. rvallee

    rvallee Senior Member (Voting Rights)

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    What's ironic is that it's a great example of fundamental attribution error coupled with survivorship bias. It's one thing to do a mistake, but, hell, to so thoroughly commit a mistake that is itself a subject of study by this profession is just... wow. It just seems like an IT security pro whose laptop is riddled with viruses, trojans and whose browser has 20 rows of toolbars.

    They see our behavior and consider it abnormal (fundamental attribution error) because they have never experienced (survivorship bias) this reality enough to understand it. One just feeds on the other in a loop of, I guess, unhelpful illness beliefs. This whole "chronic pain is different from acute pain" is just a marvelous summary of why it's crucial to incorporate people who experience the problem, as otherwise there is just no correction to the process and it can take a life of its own way past its expiration date.
     
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