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Simon Wessely and "all in the mind"

Discussion in 'General ME/CFS News' started by Esther12, Jan 3, 2012.

  1. Enid

    Enid Senior Member

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    Good points Mishmash - I think we carry something of a burden of a "paternalistic" approach to patients here where a self promoting few are able to blind so much of the rest. (the creep of psychiatry in the absence of knowledge).
  2. Esther12

    Esther12 Senior Member

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    Sorry mark - I didn't mean to imply you'd said anything. I think we've had a miscommunication. (I'm knackered today so could have misunderstood you now).

    Problems like CFS are probably where a system like the NHS is worst. I think that there are also cultural differences - there's probably a greater level of deference in the UK, things like that, which make it easier for the sort of problems which surround CFS in the UK to flourish.

    'Paternalism' is a problem too, as it can be used to justify all manner of things.
  3. Quilp

    Quilp Senior Member

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    [quote/

    In fact, no doc I have visited has ever blatantly called me depressed or a liar (which seems to be Wessley's modus operandi). [/quote]

    Hello Mishmash

    That's one thing that Wessely will never do openly. He's far too canny for that. The message is always the same, but his rhetoric and his audience are skillfully crafted.

    You wouldn't want to buy a second hand car from this man.
    He'd leave you thinking you'd got a bargain, but in reality you can expect the wheels to have fallen off just as he's out of sight......and you'd have a job getting hold of him again. He'd revert to only speaking Latin ( but he'd never raise his voice and sympathy's would abound )
    He's the most charming man you'd never want to meet.

    As for doctors, they are in my opinion, far more subtle than they were when I first became ill. The message is the same but it is brought to you with a forced smile, served with a nodding burrowed frow and an unconvincing dish of sympathy.

    Esther12 - sorry Esther I was referring to my own posts in the past. I have made fun of Wessely in a few threads - one in which he brings Peter White ''back to life'' and I have cringed. Other times I have called him a snake and it has done nothing to advance the argument except make me feel better :)
    I admit to being ashamed when I see some of my own postings in the past, but I remember feeling so ill that at the time I really didn't care.

    I came across as being really angry, some would say childish, but I didn't care; some would say it was pointless, but I didn't care. Some would say I was wrong to do so, but I didn't care. I didn't care because I was hurting so much, and yet being told it was ''in yer head son'.
    I do feel ashamed, but looking back how else can I fight back. This is the only way I know how.

    You have furthered the argument positively in my opinion. I know others have referred to Sonia Poulton's blog, but I would point others to yours first.
    I hope others reading this have the chance to read it like I did ( although I did it in bite sizes ) If there is a better thread/blog on Phoenix Rising, I haven't seen it.

    Kind regards, Mark
  4. Enid

    Enid Senior Member

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    I think we can understand Mark - those of us who have come face to face with "in yer head" (I had been passing out at that time) might be allowed some anger, but I hope anything OTT from me at any particular time has/will be moderated. What's more if one were able to attend a CFS "clinic" then acceptance of depression was required.

    And no I wouldn't buy a second hand car either it might finish up like this. :alien:
  5. Esther12

    Esther12 Senior Member

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    It's easy to get testy and confused about things. As long is one is open to learning new things, and changing one's beliefs, then one can always improve. As I said, I think I've become more hostile to those who have taken psychosocial approaches to CFS as I've read more of their work. Maybe I'll find a new argument will change my views again? Who knows?
  6. Esther12

    Esther12 Senior Member

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    Just reading some evidence Wessely gave to a select comitee on military health:

    http://www.publications.parliament.uk/pa/cm201012/cmselect/cmdfence/uc762-ii/uc76201.htm

    I thought someone else had mentioned that he and Clare Gerada don't talk openly about being married to one another, yet he did here:

    There's also some of the usual stuff about the danger of people's being worried about suffering from something called mild-traumatic brain injury, etc, but it's nothing new.

    This bit seemed a bit funny, in light of the spin and manipulation which surrounds the promotion of his therapies for CFS:

    Battery Muncher likes this.
  7. SilverbladeTE

    SilverbladeTE Senior Member

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    Somewhere near Glasgow, Scotland
    regulating information?!
    what planet does that man live on?

    one can have standards by statute, but you sure as hell CANNOT "regulate information", unless you are perhaps, the Khmer Rouge.
  8. Esther12

    Esther12 Senior Member

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    I'd just been linked to this paper from the 'Down With All That' blog:

    http://downwithallthat.wordpress.co...king-the-docs-overstepping-the-mark/#comments

    I don't know much about the areas addressed there, but wanted to make some of my own points.

    Medically unexplained symptoms: exacerbating factors
    in the doctor–patient encounter
    L A Page MRCPsych S Wessely MD FRCPsych1 2003

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC539474/

    It's a pretty good paper for illustrating a lot of the things I find annoying about how Wessely writes: playing with words, coming up with less well understood ways of saying the same thing, constructing narratives with selected lists of 'possible' explanations, or 'proposed' interventions that only ever reflect his own assumptions.

    The first sentence is worth mentioning, because I often see CFS patients being criticised for talking as if managing medically unexplained symptoms' is just used as a to mean 'treating somatization':

    I also like Wessely's characterisation of the criteria for Somatization disorder, which is different to those I have seen:

    Those stubborn patients.

    So if we can dig back through those definitions, CFS => MUS => Somatization => refusal to accept advice and reassurance from doctors.

    Now that I'm aware of the evidence and studies addressing the impact of CFS on people's lives, how ineffective the treatments available are, and the low rate of recovery, my willingness to accept reassurance from my doctors and make life decisions based upon those reassurances seems rather foolish.

    Wessely et al. seem to have a bit too much confidence in the extent to which their research has allowed any real understanding of the causes of MUS. I don't think that had any more knowledge of predisposing and precipitating as perpetuating.




    5 years earlier he'd published a paper looking at childhood abdominal pain's association with adult MUS:

    http://www.bmj.com/content/316/7139/1196

    They found:

    So often with these studies, they find that bad things correlate with other bad things. This is unsurprising, and uninteresting, particularly with subjectively defined illnesses. My expectation is that difficulties and hardship in childhood are likely to be associated, to some degree, with difficulties and hardships in adulthood - be it for genetic, developmental, social or any other reason. There are going to be so many potential confounding factors that only very thorough research would be able to provide really meaningful and reliable results, and I've never seen Wessely be involved with anything that reaches this standard - it would be difficult to achieve. That many of the associations founds are so uncertain might have been worth mentioning. With CFS we've seen a number of studies reporting increased rates of personality disorder compared to healthy controls, and a number of studies showing no increasing in PD compared to MS patients, and a recent one showing no increase compared to healthy controls when PDs are not diagnosed in ways known to give a high rate of false positives (an obvious flaw with the earlier studies, which any who gave a shit about patients would have complained about).

    Just reading the two Wessely studies on childhood stomach pain, one found

    The other found:

    There's an endless stream of these sorts of minor associations which turn up in some studies and not others. Generally, their only value seem to be justifying vague prejudices against those with MUS. This sort of casual approach towards lumping patients together and making claims about them should be understood as equally morally dangerous as when this approach is taken to different races.

    Again, this stuff is just creating a narrative, rather than presenting evidence:

    Then there's this:


    Really? Inappropriate, false or misleading medical explanations might lead to more consulting? Not trusting one's doctor could lead to an attempt to get different opinions? Is Wessely going to suggest tighter regulation, and more serious disciplinary action for those medical staff who make false or misleading claims to patients? It's not likely, is it. More likely that further research will need to be funded to better understand how to manage and manipulate patients in to believing that they can trust their doctors: the deconditioning and fear-anxiety models now seem to be so debunked that these dishonest narratives have passed their sell-by date, but I'm sure that new ones can be found.




    When the psychological work around MUS is so often used as an excuse to mistreat patients, it's not that surprising that patients might become less enthusiastic about seeing a psychiatrist. There is also a sense that some doctors turn to psychological explanations as a default when they cannot medically explain symptoms, and this is is no a well respected approach.

    So in a qualitative analysis, the authors lumped explanations in to the categories 'rejecting', 'colluding' and 'empowering', that they decided 'empowering' are the most beneficial. This astounding result has clear implications for how patients deserve to be spoken to.

    I wonder which would be best out of 'Good', 'Bad', and 'Ugly'?

    Also, they don't account for the possibility that there could be some correlation between a patient having problems which allowed them greater influence over their symptoms, and coming to explanations of their illness which make them feel that they have influence over their symptoms.

    The whole paper is available here, and it's pretty typical rubbish. The 'collusion' section stood out to me as being especially bad.

    http://www.ncbi.nlm.nih.gov/pmc/articles/PMC27727/

    The positive empowering explanations do seem quite dodgy and manipulative to me.

    Ho ho ho ho. That's right Simon, that what the adoption of the 'Chronic Fatigue Syndrome' label does. You really are a world class expert on these matters.

    This point prompted this letter:

    There were a few other letters sent too, here are a couple I picked out:

    It's now really late.... but I wanted to get this done before crashing. I'm planning to read through and edit tomorrow.

    I also stumbled upon this chapter by Wessely that I want to read, but wasn't able to today:

    http://books.google.co.uk/books?id=UHTOcIL_m54C&pg=PA323&lpg=PA323&dq="Aching muscles after exercise." lancet 1987&source=bl&ots=WgUeM-mPPd&sig=pKN-nUN4KyqfCl2jOsE3ImVJDJc&hl=en&sa=X&ei=1d2NUJvOFoHZ0QWb7YCYAw&redir_esc=y#v=onepage&q="Aching muscles after exercise." lancet 1987&f=false
  9. Enid

    Enid Senior Member

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    All for better training in Docs (the generalists) because I think this is where the mumbo jumbo begins. Can't diagnose so resort to "all in your mind" (must have been in their training somewhere as a genuine diagnosis). I thought all I want now is Vincent Price standing at the bottom of my bed and Edgar Alan Poe to complete the picture. How akin to witchcraft the whole experience was, such smooth persuasive tactics employed, only just short of the rack, and one is so obviously ill as persistance and tests revealed subsequently.
  10. Snow Leopard

    Snow Leopard Senior Member

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    Exactly, and to go further, if a syndrome is unexplained, then it justifies more research spending to start explaining it, not merely pretending it doesn't exist.
    Enid likes this.
  11. user9876

    user9876 Senior Member

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    A quote from esther's post:


    I think this is an interesting one. The implication seems to be that MUS must be psychriatric due to these causes. However look at the "childhood experiance of parental ill-health". I guess you could claim an explanation that this traumatises a child. But there are other explanations the main one I would have thought was that what ever the cause it is genetic or that there is a set of diseases that are more likely given a genetic explanation.

    The first two of these factors would fit with MUS being explained by autoimmunity. However clearly this explanation doesn't fit Wessely's model so he simply ignores them. It seems like intellectual lazyness to assume a model and look for supporting evidence without looking at the quality of the evidence or for other explanations.
    Valentijn and alex3619 like this.
  12. natasa778

    natasa778 Senior Member

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    Or that they relate to inherited metagenome. But this area of science is so many light years ahead from W&co trenches, I wouldn't expect they even know about it.
  13. Enid

    Enid Senior Member

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    Can't help commenting on "high rates of personality disorder" classification used so freely by the psyches - one wonders if they themselves might have it (whatever it is in their book).
    Shell likes this.
  14. Shell

    Shell Senior Member

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    I am one of those ex-psychi nurses who doesn't believe in personality disorder. It sprang up out of nowhere to explain patients who did nasty things and expanded to cover patients who "seek attention" which covered just about anyone with serious illness requiring more than a 5 min GP appointment. It's a load of crap. Frankly, I think there is more evidence that fish can ride bicycles than that there personality disorders.
    I nursed a couple of people who had been dx with the old psychopath label. Certainly they were impulsive, nasty at times and didn't seem to understand the basics of right and wrong. However they also had serious pychotic illness to deal with and were on a truck load of toxic medication. One patient in particular sticks in my mind because he had such developmental delay emtionally. Was it a side issue to his schizophrenia? Was it that he wasn't a very nice person and this was magnified by mental illness? Or were the drugs stunted his ability to make good decisions? Or was it a combination of the lot? Who knows? We certainly didn't.

    I might just believe in narsisstic personality disorder only that would let Wessley off the hook. I think he can help it :D
    Valentijn and Enid like this.
  15. Sean

    Sean Senior Member

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    +1
  16. Sean

    Sean Senior Member

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    It is the uncritical certainty, the lack of appropriate doubt and caution and restraint, the failure to properly explore contrary evidence and alternative interpretations, in the endless rain of ex cathedra pronouncements like this from Wessely that most disturbs and angers me.

    That quote is just straight propaganda in service of a pretty nasty psycho-drama morality-play view of the world, (which, surprise, surprise, has people like Wessely at its apex), and it is a good example of just how he has poisoned scientific and public debate.
    Valentijn and Enid like this.
  17. meandthecat

    meandthecat

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    I so agree sean, once labelled you lose your humanity; the struggle is then about the label.
    I reject the label of CFS but in doing so I don't 'undo' it I merely add levels of non-compliance and so more evidence to the medical mind of a psychiatric component to my condition.

    I went recently for a minor surgical procedure, because of the CFS diagnosis my GP described me as depressive; I then had to convince the surgeon that I was worthy of the op' ,a hernia repair. He thought that perhaps I would not be capable of recovering from such an insult and would use it as an excuse for what! I don't know... and neither did he because he knew nothing about me and didn't need to ask...... because I was labelled.

    To be fair to him, he was an old school no-nonsense surgeon, he did listen and made up his own mind and went ahead with the op. What was sad was that we had to go through all that crap first.

    The label enables clinicians not to engage with the patient but instead to impose a solution which suits them. Medicine as an imperial power enforcing a colonial mandate upon the sick.
    In the British Empire the worst colonial crime was 'going native'; forgetting whose side you were on, being swayed by your humanity and treating the locals as your equals. ring any bells......

    With the Jimmy Saville child abuse scandal growing larger everyday and the victims finally able to speak of damaged lives and the stigma of not being believed I wonder how long it will take for medical abuse, particularly psychiatric , to attract the same degree of social opprobrium. Is the damage any less?
  18. Esther12

    Esther12 Senior Member

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    Wessely's concerned about some of the misunderstanding's which surround his field:

    http://www.kcl.ac.uk/newsevents/new...spx?utm_source=twitterfeed&utm_medium=twitter

    The trouble is that people's perceptions of the efficacy of his treatments, and the scientific nature of psychiatric research is wrong.... not that masses of psychiatry is a quackfest, and CBT is far less effective that those making money out of it like to claim.
    Valentijn likes this.

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