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Professor Simon Wessely says he is misunderstood

Discussion in 'General ME/CFS News' started by Daisymay, Nov 27, 2012.

  1. natasa778

    natasa778 Senior Member

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    my anecdote wasn't used to illustrate how me/cfs patients are treated - my friend does not have ME. It was used to illustrate how doctors are overdiagnosing stress and pushing the notion that physical issues stem from mental health issues in cases where they obviously don't. I am not saying they never do, just that they stress explanation is GROSSLY overused by docs. Not to mention psychiatrists. To put it mildly.

    There was actually an article, a public document written and distributed by a group of UK psych only this year, in which they CALLED FOR ALL OF THOSE WITH UNEXPLAINED physical complaints to be diagnosed with mental health issues (that cause those unexplained physical symptoms). I posted it the link here somewhere at the time ... Criminal stuff.
     
  2. alex3619

    alex3619 Senior Member

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    Firestormm, you are saying exactly what I am saying, except that I see no value in engaging in DBM proponents unless they are willing to engage in open and honest debate .. which I do not see.

    In particular the whole point of my post was that many psychs/docs etc DO get it and the issues. You seem to have misread my statements.

    Bye, Alex
     
  3. alex3619

    alex3619 Senior Member

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    Its a done deal. DSM-V has SSD, Somatic Symptom Disorder. However, its worse than that. Unless something changed in the definition (we haven't seen the final draft) then even if all the symptoms are explained, if there is excessive concern or reaction to the symptoms (and how in Hades does a doc guess its excessive?) then you still have SSD.

    So everyone with ME or CFS could qualify for SSD. All you need is a doc that thinks so. This is part of the over-psychologization that I am complaining about. The psychs now have all the power unless DSM-V is stopped, and its release is now scheduled.

    Bye, Alex
     
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  4. Firestormm

    Firestormm Guest

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    Fair enough then. I apologise. What's 'DBM'?
     
  5. alex3619

    alex3619 Senior Member

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    DBM = Dysfunctional Belief Model (of CFS) - its a name I use to distinguish between other uses of CBT and even GET and the rationale they use for both of these in treating CFS, and by inference ME. Its all about changing our faulty belief systems, and a huge problem with it is they have yet to show we even have faulty belief systems. Sure some of us make mistakes, people do that, but for beliefs to drive the symptoms they claim, if it is even possible, they would have to be very powerful and strongly held. I do not see that in most patients (though alas maybe some). Also our psychology, based on my experience and those I have talked with, do not match the DBM claims.

    I have no problem with CBT and GET when rationally used. I wouldn't even have a problem with them in proper clinical trials of CF (with ME patients clearly excluded) if everyone knew the risks, proper harm management was in place, and it was acknowledged to all it was experimental. Its the claims that go beyond the evidence, way beyond the evidence, that I have issues with.

    Just to qualify, I have met some so-called ME patients (oh, I am doing that thing of questioning the diagnosis) who seem to have very strong wrong beliefs. Two cases stick in mind - both guys. One was obsessed with chakras. He had bad chakra energy. He tried to convince me. Not likely.

    The second was a guy who swore he had CFS, and even ME. He said he was put out that docs did not believe him. He had so much trouble breathing sometimes (yes, breathing) that he had to run on the spot for five hours or more just to keep breathing. Say what? You can see my skepticism.

    Both were entirely convinced they had CFS or ME. The second one would not meet any definition of ME I know of. The first one might have had CFS for all I know, but was not acting like 99% of other patients I have met. However in neither case would I want to presume, just because they did not seem to have ME, that there was nothing physically wrong. It was more a case of wondering about the diagnosis and possible misdiagnosis. Even in cases with faulty beliefs there is probably no evidence of psychogenic illness.
     
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  6. Firestormm

    Firestormm Guest

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    Thanks Alex. Check your messages :)
     
  7. DaiWelsh

    DaiWelsh

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    Bit of a cross-post but this was probably the better thread for my other post, just wanted to register a hypothetical vote for positive advocacy over negative. I believe there is enough promising research and initiatives for advocates to be getting behind right now. Complaining and blaming IMHO, if ever a valid tactic (YMMV) should certainly be reserved for times when there is nothing positive to shout about.

    If we are always negative we encourage the inaccurate negative labels, so let's only cry foul when we are being ignored, which from my understanding has been the case for many years, but again from my limited viewpoint is not the case at the moment? Maybe some positive stories will change our wider perception, maybe it won't but I believe it will be more effective and that it is worth a try.
     
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  8. Firestormm

    Firestormm Guest

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    Just posting, not agreeing, haven't read it properly:


     
  9. DaiWelsh

    DaiWelsh

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    Again the conflation/confusion of a complaint of mislabelling with a suggestion of non-validity <sigh>
     
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  10. SilverbladeTE

    SilverbladeTE Senior Member

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    1) Docs should be able to prescribe ANy medication they think will help a patient, provided the patient is FULLY aware of any risks and gives consent
    but many docs can/do pressure patients, see that all the time, so that's an issue
    but end of the day, provided a doctor has good reason to think a patient maybe helped, then it's entirely between them.
    if a patient is dying or suffering without relief, risk taking is valid, what have they to lose? provided again of course, of full honesty and agreement.
    Practical medicine is an art as much a science, it is about Humans, not machines, not DNA etc. And from the science, the sheer complexity of Human variance is to large for harsh deliniation/rules except in broadest or precise ways.
    IE, one treatment may work for one, not for another...but we all have base physical similarities.
    Thus, compassion an forebearance should apply

    Patients are NOT "consumers", dear God, I hate that evil shit of trying to make suffering people into cash cows, ugh
    Neither are they guinea pigsm the appalling evils done in the last century were never properly dealt with because "doctors are demigods" etc, sigh.
    yet, a good doctor is a wonderful boon and deserves highest respect.
    2) the pharma corps are scum, they have huge systems of, let's be honest about this, out right bribery, manipulation and cover up safety issues and other factors as their typical Modus Operandi!
    Even medical journals etc are now expressing this issue openly as the majority of drug trials linked to pharma corps are not trustworthy/falsified/biased!
    if this was any other group, they would be hunted down by the FBI, etc, considering the number of deaths, they'd be waged WAR on, actually. Why are we doing drone kills on nutbars in Afghniastan, when scum in our nations are killing huge numbers and driving our systems to implosion?
    Vioxx killed 18 times more Americans than 9/11 did! So what did they get? after massive outcry and pushing finally they get a fine (less than their profit they made!)...but no one is in jail or death row as they should be.
    In the UK what happens? well our government spreads their legs and greases up for GSK, Merck etc!
    Can't be nasty and investigate/prosecute major campaign contrinutors, or folk the government ministers will work for after they leave office, are related to or have shares in *pukes*
     
  11. Enid

    Enid Senior Member

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    And as one eminent medic once said to his students - the diagnosis is in the listening. No record of mumbo jumbo but applying all the relevant tests to understand the biomedical pathologies. Wouldn't it be nice not to meet the pathetics of SW and all his cronies.
     
  12. In Vitro Infidelium

    In Vitro Infidelium Guest

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    I expect you do find it offensive – but then my contention is that I do understand and in the case of those who I have disagreed with, I consider them to be advancing false arguments, which leaves you being offended.

    This is the second time this week you’ve made a definitive statement about my perspective which is so far from being accurate that I suggest you give up trying to interpret what you think I’ve written an just reference what I have. I was going to let the previous comment go but perhaps it’s best to excise the nonsense in one go: Firstly my stance is not nor ever has been that “psychiatric care should be an automatic part of ME treatment” – other posters have clearly grasped that my recent posting have been about the current status of Liaison Psychiatry in the NHS and the implications that has for ‘negotiating’ change and enhancement of services for people with M.E/CFS.

    At no point have I written approvingly of the use of psychiatry in the routine care of M.E/CFS – with one the limited exception, the last time being over year ago I think on PR - of referencing the study of O’dowd et al which involved no psychiatrists – the delivery team was a Clinical Psychologist, a Physiotherapist and an Occupational Therapist in a pain management clinic setting. As a model for delivering illness management techniques to newly diagnosed M.E/CFS patients, I still think that study has promise, however I don’t expect anyone to agree with me.

    Again this is preposterous at no point have I ever suggested passivity was desirable – though clearly we have a profound cultural gap in understanding if you believe that being soft spoken and polite is incompatible with being assertive.
    Your argument about history is without evidence but it raises an interesting question about your position. My position has been argued primarily in specific reference to the UK situation – my argument is that the aggressive, conflict driven activism that you and others favour, will have profound negative effects. Supposing I’m right – perhaps even just within the UK context – how is that you are going to be affected by any negative fall out ? I return to a point I made a couple of days ago - those people who are loudest in calling for conflict, are frequently absent when the fighting actually takes place. It seems to me you are in a privileged position – demanding that M.E/CFS advocacy be noisy rebellion in a context that is very particular to the UK, such that you (as a non UK resident) will be wholly immune from any negative effects. It’s easy to brave for other people but what costs of ‘noisy rebellion’ are you putting yourself up to pay ?
    IVI
     
  13. Wildcat

    Wildcat Senior Member

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    ##################################################################################



    .


    From 'The politics of fatigue" quoted above in Firestormms post....

    "......‘Parity of esteem’ is the rather clunky phrase coming from the Department of Health calling for mental and physical health to be valued equally.

    This will only happen when we remove the traditional divide and recognise that all illness has both biological and psychological dimensions."

    http://www.cnwl.nhs.uk/blog/the-politics-of-fatigue/

    ###############################################################
    .

    .


    Has anyone noted, or have evidence of, the amounts £££$$$$ earmarked/prioritised by MRC WHO CDC, pharma corporations etc, for researching the "psychological dimensions" of ... smallpox, mumps measles rubella, cholera, typhoid, SARS, 1918 spanish flu .... for example?


    sorry about the obvious anachronism re spanish flu .... as orgs mentioned didn't exist then, but you get my drift i'm sure.

    .
     
  14. Wildcat

    Wildcat Senior Member

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    CBT as treatment for bubonic plague?? -

    CBT might help the sufferers 'live with' bubonic plague of course, and help with the 'psychological dimensions' of the Black Death, for example.

    .

    the best known epidemic of bubonic plague, that killed 1/3 rd of the population of europe, or was it 2/3rds, was brought to europe on ships .... by hamsters from Siberia... as explained by Basil Fawlty to Manuel in a rather famous comedy program.

    .
     
  15. alex3619

    alex3619 Senior Member

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    Well, here is the problem. Diseases do have biological, psychological and sociological dimensions. Hence they argue they should have equal footing. Yet cures tend to come from biomedicine - psychomedicine has a pathetic track record of cure. Social management of risk factors help a lot though. However that is only true when risk factors are identified and managed. Suspected risk factors coming out of psychopsychiatry generally will have no positive impact if managed because they are usually not causal, only hypothetical.

    So if the composition of the disease issue is 90% physical, 9% social, and 1% psychological, how is this an argument for equal footing? To argue equal footing is to argue that all three have equal impact. Somehow though the social aspects get dropped by many BPS proponents, and the way the issues are dealt with is more 95% psycho, 4% social and 1% physical. To argue that all three are important is one thing, to argue they have equal impact is another. How much impact each factor has on each disease will depend on what the causal factors are for that specific disease. Which means we have to identify them. Which means we have to engage in objective science, and not subjectively "verified" hypotheses.

    I can make an argument that the entire spectrum should be rebalanced, but it would never look like a one third split or the disproportionate bias toward psych that some are arguing for.

    I am also slowly making an argument that management of psycho- and social- aspects of disease need to be treated far differently than they are, in both research and clinical terms. I have a lot more work to do in that area though, years more. BPS is not a bad idea, but it is very badly managed, implemented and used to promote extremely limited viewpoints.

    The other thing is that a divide between psycho- and bio- is indeed artificial. There is only bio-. Psycho- is just a convenient projection on bio- views that ignores the biological complexity. Colour me biased, but I am a monist on the mind/body issue. That does not mean that there is not a social aspect. Humans learn and react in social environments. So another perspective is that psycho- is just the interface between bio- and social-. Its a redescription of the interaction. Its not reality.

    Bye, Alex
     
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  16. alex3619

    alex3619 Senior Member

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    Yes Wildcat, which proves bubonic plague has a social dimension ... though I am not sure of the hamster link. It was used as a biowarfare agent I think, poison the wells of your enemies with dead rats. Dealing with that was effective, because the social issues were real. That is more than I can say for a lot of psychopsychiatry. They are just hypothetical models that somehow have been overly privileged.
     
  17. Valentijn

    Valentijn Activity Level: 3

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    In that case, could point to where forum members have posted an anti-psychiatry message, versus a message that rejects the use of psychiatry in the basic treatment of ME?

    I'm glad to hear it, though I think based on your prior postings, your "implications" have been to the contrary. Perhaps you'd do better at avoiding this sort of misunderstanding if you stated your case more clearly, instead of relying on implications.

    I am not necessarily calling for conflict. I am objecting to people such as yourself who attack every attempt at advocacy by patients, claim there is some better way we should be doing it, but then state that you can't be bothered to tell us how to advocate "properly". You are not providing constructive criticism when you engage in that sort of behavior, and it seems rather cruel to attack the meager efforts of highly disabled patients.

    I mentioned that tactic to my fiance, and he said that sounded just like what the CBT-practicing psychologist used to do: tell me that I'm doing things wrong (you are not a patient, you shouldn't be home all the time), tell me I should be doing something else (you should be getting out more, you should be more active), and when I asked how to do those things in the constraints of my pretty severe OI and PEM, would simply say that I have to figure those things out for myself.

    Maybe vague implications and dodging explicit questions would work for a different audience, but I don't think it's an effective tactic for you to take here: there are massive threads discussing the psychological "research" that engages in similar evasions, and it's pretty easy to recognize it after a while, even if it's coming from an unexpected source.
     
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  18. Wildcat

    Wildcat Senior Member

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    Hi Alex, the social dimension (historical and more recent) of the spread of bubonic plague, are real.

    .
    but numerous and diverse factors, such as the trade and economy of 14th century Europe, when plague-carrying rats came to Europe from china or central Asia via the Silk Route (social dimension) ..... and the effects of isolation, the social alienation of people living alone, unsupported, with disabling illness in 21st century Britain, the two are not really comparable … though both may be termed ‘social dimension’.

    One of the main failings of BPS is that it fails to distinguish between cause and effect.





    Siberian hamsters and the bubonic plague – Fawlty Towers

    http://www.youtube.com/watch?v=VPP4P3gKGss

    ‘Basil the Rat – the hotel inspector’

    ‘Manuel insists that his pet rodent is a Siberian hamster. However Basil is certain that the pet shop has conned the gullible Spaniard and sold him a rat’

    Manuel: I say to man in shop "Is rat." He say "No, no, no. Is a special kind of hamster. Is filigree Siberian hamster." Only one in shop. He make special price: only five pound.

    Basil: Have you ever heard of the bubonic plague, Manuel? It was very popular here at one time. A lot of pedigree hamsters came over on ships, from Siberia.

     
  19. alex3619

    alex3619 Senior Member

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    Yes Wildcat, I do not disagree. What I am saying though is that there are indeed social dimensions, but the failure has been in analyzing them, defining them and dealing with them, as well as putting them in perspective. For example in peptic ulcers, a purely physical disease that was mislabelled as psychosomatic, there were major social issues in food and hygeine habits, including consumption of refined wheat. Controlling those helps the public health perspective. The problem is it doesn't cure the peptic ulcer, it just limits how many get sick. My blog on it is here:

    http://forums.phoenixrising.me/index.php?entries/here-we-go-round-the-merry-go-round-part-one.1229/

    Please note the extreme time frame from recognition that most peptic ulcers are caused by bacteria to general acceptance of this and disapproval of psychogenic interpretations. Over a century! It was also patient driven efforts that made the change ... not doctors, not drug companies, not government watchdogs, but patients complaining to media again and again. Though to be fair it was Dr. Barry Marshall who really got the public interested back in the early 1980s. The medical "authorities" were convinced he was a quack.

    So a social perspective does have an important factor in many diseases as it influences risk factors. What many in BPS are saying though is managing these issues lead to cures. So far I have seen no evidence of that in any context. I have seen no studies that properly measure such impacts in purely objective ways, at least none that show cures ... though a few show these methods don't work. Its all subjective and inferential, and so highly susceptible to bias and even the placebo effect, presuming that the placebo effect is not just nonsense itself due to relying on subjective interpretations. Indeed the argument has been raised in lots of places that there is no placebo effect ... or rather that its an example of bias that shows up when using some kinds of subjective measure. These subjective measures are of course similar to what those who promote CBT/GET use in their studies. There is no place for subjective and potentially biased outcomes if something is to be evidence based or taken seriously.

    One social dimension in ME for example might, and I think a case can be made for this, that doctors and society promote people exercising too much and too soon after post viral fatigue. Its entirely possible that such advice leads to increased risk of PVFS converting to ME. Yet how many of the biopsychosocial researchers are examining this? None? Why not? They seem less interested in uncovering factors than in "proving" their hypotheses, which is something they can never ever do using their severely limited methodologies.
     
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  20. taniaaust1

    taniaaust1

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    That reporting system where I are in Australia is letting many patients down. Due to very low dose Amitripyline my IBS-C got far worst and to the point it caused me to have a prolapse within weeks (something Id NEVER had before). The after effect of this was having to have daily enemas (which I'd never had to do before). If one looks on Wikipedia it does say that this drug slows down bowel peristalisis but my doctors wouldnt report it (even thou I had to see a bowel specialist due to what it did to me and hence now are on things I wasnt on before due to it). The Doctors just said maybe it was just a coincidence my IBS-C got a lot worst and blamed my IBS-C for the sudden prolapse issue (it only took 3 weeks for that drug to give me major issues). They wont blame the drug even thou its taken me 4-5 mths after stopping it for my bowel to get its peristalisis back more (and I still have more issues then I did before that drug trial).

    Then there is my sister.. she was anti vaccination but due to others ended up deciding to get her 3 children vaccinated.. her oldest unvaccinated child was 8.. one was 5/6 and one was about 3 or 4. Her kids ended up with issues after vaccination (with one having his first ever asthma attack 3 weeks after his first vaccination and now he needs to be on asthma meds)... another child got like sick with a cold very soon after and has been getting colds on and off ever since every few weeks... obviously the vaccine has lowered her immunity. Due to the side effects of my sisters children not appearing in the first week after vaccination (except one kind ended up with a very very swollen huge bruised arm).. the doctor wouldnt report any of the effects of these children with the vaccine.

    This makes me wonder just how many drug effects arent reported by our doctors here seeing both me and my sister has had this issue with doctors not reporting. (Im still quite annoyed about the Amitrip as my reaction was a bad one eg seems to be some permanent damage and was very very unpleasant and the bowel specialist thought at first I may need surgery due to the prolapse issue it caused).

    Barb.. some of the stories you believe to be exaggerated.. may well be true. There is some fairly far out stuff which happens as far as ME/CFS goes and how people get treated.
     
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