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"Medically Unexplained Symptoms, Somatisation and Bodily Distress"

Discussion in 'General ME/CFS News' started by ixchelkali, Aug 13, 2011.

  1. Firestormm

    Firestormm Senior Member

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    If only more of them would say 'we don't know' or 'we can't do anything more for you with conventional medicine' perhaps this diagnosis would be easier to manage psychologically.

    There is no 'magic bullet'. We can only help in some ways with symptom relief. Psychology is no cure etc. etc.

    Of course, 'they' are fearful of doing that, but it is essentially what happens in other chronic conditions like MS, Cancer etc. For 'us' though it might be seen to be counter-productive, that 'we' would 'give-up' and not fight.

    Personally, the opposite is true, in my own case and in that of others who live with a better recognised neurological condition with whom I associate regularly.

    Acceptance is not surrender. It lets you get on with your life. It allows you perspective. Oh it can be devastating initially, but after years of thinking it was my fault I wasn't getting better - the realisation that 'modern medicine' and neurology and immunology were not infallible was quite liberating; for me and my family.

    Off now to run a marathon. But Seriously, I hope you get my point.
  2. Enid

    Enid Senior Member

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    I do remember with great relief Firestormm my Neurologist admitting finally - could be ME, they think it's viral, can't help and I'm so sorry - find someone who knows. (And following research etc myself with this physical illness from then on).

    Fingers crossed for your marathon !
  3. Firestormm

    Firestormm Senior Member

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    I am just of the opinion that for many people I suspect its' the 'no knowing' that may lead to psychological distress. Of course I bass that on my own experience and that of those I talk to - did you find the same?
  4. Esther12

    Esther12 Senior Member

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    Being told that my fatigue was caused by deconditioning and an increased sensitivity to normal sensations led to really stupid behaviour when I was first ill and not recovering from glandular fever - 'bravely' pushing through really extreme fatigue, thinking that I was doing what was best to recover... then gradually realising my doctors had just been promoting this biopsychosocial CFS quackery, and didn't really know what they were talking about.

    With CFS, the uncertainty is hard, but the uncertainty combined with the pretence of certainty coming from those you should be able to trust makes it a lot harder.
  5. Enid

    Enid Senior Member

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    I think the long not knowing is difficult as various tests go on and watching the bafflement on various Docs faces as one drags oneself through them. But yes there is the stage of realising one has a disease not yet understood and do what one can to ease symptoms as they progress with all the supplements etc usual for ME with a little help from a trusting GP. But then 4 Docs in my family who never deal in complete certainty. How psyches seem so able about their theories baffles (careful choice of words here !)
  6. SilverbladeTE

    SilverbladeTE Senior Member

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    "A load of stupid bollocks!" is, I think, the easiest way to say that, eh, mate? ;)
    Like some lunatic "Oroborus" numbskull nightmare only Kafka could dream up!
  7. Enid

    Enid Senior Member

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    I've missed a good laugh from you Silverblade - especially enjoy the word numbskulls.
  8. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    *bows theatrically!*
    My pleasure, ma'm, gent or Otherworldy Being of a Tentacular Bent! :p


    Nuuuuuumbskulls....*he says with a prolonged, resonating sound*
    Makes me think of, oh, you know those Tibetan Water Bowls, you run a rod around them and they...thruuuuum?
    I kind of imagine Wessely, Sharpe, Reeves, as as sort of trio of like bronze toby juggs, crossed with the three classical "Wise", or in this case, "Dumb" Monkeys (see No ME/CFS, Speak No CFS, Hear no ME/CFS!)
    with empty heads full of water, and them running their fingers around the rim of their heads...."thruuuuum..."
    Numbskulls! :p

    [video=youtube;9DrXGLetZF8]http://www.youtube.com/watch?v=9DrXGLetZF8[/video]

    http://www.bbc.co.uk/news/science-environment-13976598
  9. Snow Leopard

    Snow Leopard Senior Member

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    If this is how they think, then... That would explain a lot. ;)

    As far as "medically unexplained illness" goes, either they are reinforcing the duality they complain about, or there is no such thing as "medically unexplained illness". I'm going with the former. The point is that even psychiatric diseases have biomedical pathology. Concepts like "medically unexplained" pain caused by "somatisation" will always be a pseudoscientific concept until the underlying process is demonstrated scientifically. And when it is, it will no longer be "medically unexplained".

    The danger is not not so much that they think they will magically be able to heal most patients. The danger is that they don't see that their actions could harm some patients.
  10. alex3619

    alex3619 Senior Member

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    Hi IVI, I don't disagree with any part of your analysis here. Society is a group construct, whereas psychology is a science that needs decades of advances before it can be considered mature. The presumption being made is that the BPS interpretations are correct, so they design studies based on this, they interpret studies based on this, and they evaluate patient outcomes based on this. Since their treatment 'works" it follows that if I patient is not improving then it must be due to non-compliance. The dread possibility that the treatment does not work, or works on only a limited subset, is rarely considered, at least in public.

    In my view the BPS movement is more like a cult than a science. It is driven very hard by a small number of very vocal and clever people who allow no dissent. It is far from being universally accepted - I regard the IACFSME as the most authoritative body in the world, and they don't accept many of the claims being made by the BPS promoters.

    It is the bio- part that is undermining their claims the most though. As the bioscience evolves, their claims become more and more untenable. This is not just for ME, but other illnesses they want to claim as their own, including IBS. In time, I think it likely that most if not all of the illnesses they claim a BPS paradigm can explain will be proven to be fully physical in causation. The pragmatic role of psychology or psychiatry at that point is to assist patients to adapt and cope, not to offer cure.

    The sad thing is that many with ME and CFS actually need psychological and social support - they need appropriate support, not grandiose claims of miracle cures that are unsubstantiated by fact.

    Bye
    Alex
  11. Firestormm

    Firestormm Senior Member

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    Morning,

    I regard 'medically unexplained' as somewhere to dump something until it is explained. But explaining it isn't enough to get you out of that particular holding pattern. No. The explanation has to be accepted by whatever means the authorities of the day deem acceptable. Multiple authorities.

    I suggest that one of the dilemmas 'we' face is that not enough research has gone into examining the actual symptoms themselves - through biomedical means. I don't mean the possible 'viral' causes (I think that has been flogged to death but should continue), no - I mean the causes of symptoms in general.

    Within the 'Big Pot' (In the UK - Encephalomyelitis now/Encephalopathy/Chronic Fatigue Syndrome) sub-categories will be revealed, and these might lead to some (if not all of 'us') moving beyond the holding pattern into accepted disease definitions or at least into categories where more targeted and relevant treatments are made available.

    I would not (yet) put my money on Myalgic Encephalomyelitis being one of them however, although this might prove different in the USA I suppose given the lack of history in that regard as well as other reasons perhaps. But as it stands the ICCME is not sufficient to achieve this on its' own.

    Psychology will always play a part in any long term chronic disease but I think that role (which has been predominant whilst in the holding pattern), is waning. Trouble is there is little to take its place and, that is a shame (though perhaps not from everyone's perspective).

    Ideally, one would have liked to see conventional medicine picking up the pace a little with treatments - as psychology wanes, better drug protocols are made available for symptom management at least. But unfortunately this has not happened.

    It would be interesting to learn (not that it would be possible) just how many people diagnosed with one or all of the above have actually tried the 'treatments' for Medically Unexplained Symptoms. I mean if they are as 'good' as is presumed - we should all be better by now - right?

    Or perhaps they are designed to keep us in the holding pattern forever? Now there's a chilling prospect :)

    Mind you, if after 12 years I hadn't accepted the fact that there is no 'magic bullet' and was still frantically searching for one - I might be even more concerned than I am.
  12. Mark

    Mark Acting CEO

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    I am delighted that you acknowledge the illogicality of this work, IVI, and although I am less trusting than you regarding the motivations, I hope that as you uncover more such examples you will also acknowledge that this particular logical flaw is just one example of a much wider pattern of fatally flawed work which is wrongly accepted as scientific fact - and that these failings within the scientific community are blighting hundreds of thousands if not millions of lives, and indeed are even costing many lives of those worst off and least able to cope with the situation they are placed in.

    I agree, and as members will know, I go out of my way to attempt to explain harmful illogicality with reference to the context in which the individuals advancing it are operating, and to try to understand that context rather than simply bashing people whose logic is imperfect.

    In the case of these researchers, however, their context appears to be so fundamentally flawed that I find it exceptionally difficult not to question their motivations. Their fundamental motivation, as revealed by their research output and by their context and funding, clearly appears to be to save money for the state and insurance companies that pay them handsomely to do so, by analysing the experience of people suffering from medically unexplained illnesses purely in terms of their psychological state and with the aim of minimising the benefits they may receive - and they can do this because these medically unexplained illnesses 'lack evidence'. Worse than this, though: they abuse their power by utilising the tools of scientific scepticism, control of state and private funding of medical research, and control of the press, in order to prevent these illnesses from having the opportunity to become medically explained, because to explain these illnesses would cost their employers a great deal of money (estimated at over a trillion dollars, in this case).

    One may look at crass failures of logic such as this one and explain them away, one by one, and excuse the perpetrators with reference to their narrow context and lack of relevant knowledge, but only up to a point. It requires considerable sophistication to construct a justification and an understanding of their behaviour, but for most people the bottom line is simple: they get rich and build their careers by saving vast sums of money for powerful institutions at the expense of people in desperate situations of suffering who - this is no exaggeration - are struggling to survive in a situation of sickness where they are denied the basic safety nets afforded to the rest of society.

    Highly intelligent and well-educated people may construct defences of such people, and may be able to hold back from assigning malign intent - and personally, I very much tend to do so: I think it's very likely that these people, in general, "know not what they do". But most people with a basic understanding of what is going on would simply see that these researchers become rich by increasing the suffering of the sick - enabling the denial of their benefits and preventing them from being healed by blocking attempts to understand or treat their illness - and the willingness of many patients to express anger and to ascribe malign intent to such researchers is perfectly understandable. And in the case of these researchers, the bottom line for me is that they simply have no excuse, because they have been told, repeatedly, what they are doing wrong, and they have been told that it is wrong, and told why, but they refuse to listen. They are morally culpable for that failure.

    By the same token it is also reasonable to consider that the authors are not ignorant of the implications of adopting the measure, especially since this tale they are telling is not new, and campaigners have highlighted this issue to them before. It is quite reasonable to consider that they may be well aware of what they are doing. The very best one can say about them is that they are profoundly ignorant.

    I am delighted that you highlight the profound flaws in the peer review process here, and the way in which the confirmation bias of recognising as authorities only those people who share one's own prejudices can produce such logical travesties as the one under consideration here.

    I'm also delighted that your comments highlight how it is that specialists - however eminent - come to say exceptionally stupid things, and manage to get them published and used as the basis of state policy. I'm especially pleased by this because it also explains why it is important for ordinary people with wider knowledge and experience which is relevant to the matter in question, who can see through the stupidity of these eminent researchers, to have a say and to point out to them when they behave with such outrageous stupidity.

    Since the fundamental problem you highlight is one of specialists producing grievously flawed and profoundly damaging work due to their complete ignorance of areas outside their specialist field, I hope you will understand from this example (a) how such people, however intelligent and well-educated, appear as complete idiots to anyone with a basic understanding of the areas they wander into blindly, (b) how profoundly damaging it is when psychologists are placed in control of the management of a debilitating physical disease whose mechanisms they do not understand, and (c) why patients, faced with the unquestioning acceptance of the work of such people by the medical establishment and the state, feel that their generalist knowledge puts them in a position to effectively critique the work of these alleged experts, even if those patients are not expert in that field.

    We may not be professors of psychology, we may not be professors of virology, but some of us have generalist knowledge and decent logical faculties, and as such we feel qualified to highlight illogicality when we see it manifested - and as the very people severely affected by the work of these 'experts', we feel we have a right to comment on it, and should not be criticised for doing so. Indeed, organisations like the BMJ should listen to us when we do so, and they should listen with respect, rather than bowing to the authority of supposed experts and denigrating us publicly for daring to comment.
  13. currer

    currer Senior Member

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    Hi,
    I have now begun to consider the possibility that ME, like autism and Gulf War syndrome, was early on recognised by the pharmaceutical companies as a disease linked to vaccine injury in some way.

    Our patient representatives have never hidden the fact that ME can follow vaccination, especially hepatitiis B vaccine.
    Indeed Charles Shepherd has repeatedly highlighted this connection, unaware of how it would be viewed by powerful commercial interests with a need to limit or deny liability for damage.

    Look at it simply. Have you ever wondered WHY we find ourselves out in the cold together with autism and GWS?
    Could it be that government and industry know what they are doing here - that they have spotted the link to vaccination and put a block on research for that reason? The connection to the insurance industry may be not the only one preventing unbiased research into our illness.

    The medics you have rightly criticised for their dismal role in the unhappy history of our illness are in the last resort, only tools for much more powerful interests.
    I think they are in many cases unaware of how they are manipulated by their egotism and vanity into an untenable medical position on an illness which has self evidently never been psychological.

    I think it better to keep out of the "psychological" theorising. A waste of time, an elaborate diversion, a maze to loose yourself and all rationality in.
  14. SilverbladeTE

    SilverbladeTE Senior Member

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    Yeah, trying to deal or debate with the pyschobabble gits, is like trying to argue with some kind of religious cult about why drilling holes in the ship's hull you are in, during a storm, is a BAD idea
    Or, trying to convince the whackjobs at the Salem Witchtrials that the only witchcraft and devils are in their own heads :p

    Complete waste of bloody time, as they're religious fanatics pretending to be scientists!
    Science alas, is a great hideout for the actual nutcases who have to hide their inability to cope with Life's uncertainties, by forcing a Certainty on others (that's what Zealots are really about).
    Usually though the strictures and systems of Science expose such, thus psychiatry's "messiness", it's lack of "QED" is a much better spot for these cuckoos and charlatans ot hide out in.

  15. alex3619

    alex3619 Senior Member

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    UFOs

    Here is another analogy for medically unexplained: Unidentified Flying Objects.

    We don't know what they are. They could be real, or not, and are most likely a collection of different things. Yet there are people who claim they must be spaceships from other worlds.

    They are unidentified until we know what they are, at which point they are something else, no longer UFOs.

    The psychobabblers are like UFO cultists. If we don't know, it has to be aliens! Please, if you are a psychobabbler wear a tinfoil hat so we can identify you at a distance and avoid you.

    For the record, I think aliens are indeed out there, just not so sure they are here too. Until we talk to them, we will always be guessing - and space is so vast that I suspect that alien visitations will be very rare indeed, or have never happened yet.

    Bye
    Alex
  16. oceanblue

    oceanblue Senior Member

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  17. oceanblue

    oceanblue Senior Member

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    Critique of the biopsychosocial model by a psychiatrist.

    Psychiatrist Niall McLaren has savagely criticised the biopschosocial model, basically arguing that it is simply too vague and untestable to be a scientific model and is better described as an idea. The abstract of his 1998 paper says:
    I've not seen the full paper, and I'm always a little bit suspicious of polemicists but it seems to be a powerful argument.

    Actually, what I like so much about PACE is that it explicitly bases its approach on a model that while biological factos may play a secondary role, the illness is perpetuated primarily by inappropriate beliefs and behaviours. Here we do have a testable model: a theory of the illness based on inappropriate beliefs and behaviours and treatments specifically designed to address those issues. Furthermore, the strong therapeutic alliance and high levels of patients satisfaction with CBT & GET indicate that patients bought into - rather than resisted - the theory and the treatments. Yet the results (need to treat 7-8 patients to get modest improvement in 1) were mediocre. Their model failed its test. I'd like to see more explicit testing like this.
  18. JPV

    JPV Senior Member

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    The entire medical industry is so corrupt and degenerate that they don't warrant any expenditure in peoples interest. The only thing they are good at is cutting things out of your body, and that's in the rare instances when they cut the right thing out that actually needs removal.
  19. PokerPlayer

    PokerPlayer Guest

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    Well, I just think that it has taken quite too long for the United States of America to realize the utter horror of allowing a corporation to act with limited liability. It is really our whole political economic model that is to account for this. Putting corporations and money in control with no accountability for individuals negligent actions is why we are here.
  20. alex3619

    alex3619 Senior Member

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