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Professor Simon Wessely says he is misunderstood

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

  1. Enid

    Enid Senior Member

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    Well they are indeed a pretty rotten ignorant lot - can we dispense with their scariness like it's monsters in your mind and spare the children from Freud.

    If this man looks in he is undone - oft said not in the mind (whatever these idiots think it is vaguely) - cognition (like intellect never goes).
     
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  2. GracieJ

    GracieJ Senior Member

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    It is with great and profound relief that I heard from my son yesterday he is NOT pursuing his MCATs after all, pursuant to becoming a psychiatrist. Have been VERY concerned!! yet proud of him at the same time, though with me for a mother, he would have been either one very confused psychiatrist with the truth on one hand and the myth on the other, or a very conscious and conscience-driven caregiver with a mission.
     
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  3. Enid

    Enid Senior Member

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    So happy for you Gracie - psychiatry in such a muddle trying to usurp real medicine - very best wishes to him and you.
     
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  4. maryb

    maryb iherb code TAK122

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    GracieJ - I share your profound relief:) Well done to your son however on his hard work.
     
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  5. Firestormm

    Firestormm Guest

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    When you refer to 'he' do you mean me? It's about delivery of care. Whether it is a nurse, occupational therapist or psychologist or GP or neurologist or my mother. What do you do when there is no clear understanding of a cause? Or a specific treatment?

    And who is my intended audience Bob? My beliefs about my illness? Am I focusing on my symptoms too much, Bob? Is that what you are now thinking?

    When all these alternate possibilities have been dismissed repeatedly through active engagement with medical professionals - what is they left for them to offer me? Huh? You tell me.

    Come on. I really want to know. When all the possible psychological or psychiatric alternates have been checked and checked and checked and dismissed; what then?

    What is left for them to offer in terms of care and management? I would suggest to you there is very little but what they do - under NICE - personalised and relative to my severity.

    Is it &&&&&&&& frustrating? Of course it bloody well is. But my 'tea and sympathy' comment is essentially what is now available. That and some hard fought for understanding. Not bloody dismissal.
     
  6. Firestormm

    Firestormm Guest

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    I said it. Did you see any quotes? No. So it was me.
     
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  7. Firestormm

    Firestormm Guest

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    You know, Gracie, across 15 years. I think I have seen a psychiatrist twice. As rare as neurologists I suspect. For me, visiting a psychiatrist was as much about dismissing possible alternate explanations as it was including them. The only inclusion I have ever received from a shrink was depression along with ME when I was last trying to live independently but was stubbornly failing.

    The psychologists and counsellors I have seen over the years are often the only ones who had the time to engage properly and discuss what I was having most trouble with coping about. They can't fix ME but they could help me gain some better perspective about what was causing me most trouble at the time.

    What that did was to remove the anxiety of trying to live with ME and trying and failing to cope. I'm a stubborn buggar and never ask for help when I really need it, and they helped me to see that doing so wasn't a 'failing'. There has never been any attempt to belittle my diagnosis of ME from any medical professional (incl. psychiatrist and psychologist).

    There has been frustration on both 'sides' and continues to be.
     
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  8. Firestormm

    Firestormm Guest

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    I look forward to reading more Esther. Thanks. Get some rest and chicken soup - if you are not a vegetarian of course. :)

    Totally agree with you there. If there have been false claims then yes an apology or acknowledgement would be preferable. And there are some practitioners who do indeed (to my own knowledge) believe that by trying to convince their charges' they will recover totally if only they tried harder, who will over-advertise or beef-up their claims, and they should be winkled out and shot. It needs to be relative and personalised care etc.

    It seems that I should have clearly stated that 'tea and sympathy' was a euphemism or one of those other things. Rather like when I said previously that modern medicine rarely amounts to an 'aspirin and a sympathetic and understanding ear'. Clinical delivery of healthcare is very much a 'suck it and see' service for us I would suggest. And that care and good delivery can require a lot of effort on the part of patients - any patients with any and all diagnoses - to find. It is bloody hard work and typically is needed most when we are not as capable of fighting for it.

    As I said above - or perhaps didn't so much. If you engage to the best of your ability with what is offered and find it wanting - as I have - or inappropriate - as I have - at times then is that a reason to say it isn't helping others? Oh I see you have. Sorry. Need a break.

    Different services - yes. But which? You know how the broad brush is delivered at the top and then it's left to local delivery? Well said delivery unless tried and at times necessarily fought for might help. Though I'm still not clear on what alternate service should be part of this service.

    Let's say you are referred to various specialists - as needs are assessed - to essentially discount or discover possible alternate diagnoses or co-morbidities. Is that what you mean? That no access to onward referral should be closed off simply because we have this diagnosis? If so I totally agree.

    There does come a limit though - as there surely must. Most referrals are triggered by a GP I would suggest. If a patient presents with new and unique symptoms then this could trigger a referral, or specific treatment, but are you saying that we should for example, keep returning to neurologists or immunologists as a matter of course (assuming they are not attached to the ME Service (if we have one) of course)?

    Thanks.
     
  9. GracieJ

    GracieJ Senior Member

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    Firestormm I think where psychiatry is wrong is that it tries to make normal human circumstances into disease states that need "treatment." I'm all for well-grounded healthy emotional coping tools and good counseling from therapists for life circumstances. So glad you had some decent experiences. Anyone with a chronic illness needs the best management skills available cognitively, mentally, emotionally because it is going to wear you down one way or the other.

    There is another aspect to this outside of the psychiatric invented "conditions" that then need an invented "medicine."

    I grew up with parents who thought psychology was a bunch of nonsense. Alas, they also had very poor people skills, and I grew up in an atmosphere of anger and fear that I am still trying to live down. The scapegoating that goes on within the family is ridiculous. Supposedly it is all about my having "depression" and since it was the 70s and no one knew how to "deal" with that, they are off the hook. That leaves me dealing alone with years of bad memories of abuse, since the whole problem apparently was ME. (Note sarcasm, and that is me as in me, not as in ME the disease.) I have doubt now at the phrase "clinical depression." The emotional and mental abuse I endured would send anyone into a situational funk. The mislabeling and its subsequent social stigmata as well as medical mistreatments have left my life a tangled mess, and in certain circles, I have a permanent large letter D on my chest. Not a fun way to go through life. The circular logic there is the insane part.

    My point with that story is that sound psychology has its place, psychobabble aside. In our post-Calvinistic society -- and post "stiff upper lip" -- learning life management skills for good emotional health and healthy relationships is vital. It goes wrong when it crosses into pseudo medicine and politics, as in some of the life skills classes in the schools that are thinly-veiled tools of change agents for a socialist model. Fine line sometimes.

    I am currently writing down the whole experience, and as my courage and emotional strength grow enough to handle the transparency needed to publish it, I will do so.
     
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  10. Firestormm

    Firestormm Guest

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    There was. I'm not sure (can't remember) how correct it was.

    I think what Wessely has rather consistently been saying - and others too I should add and certainly not in my experience by any means all of them psychiatrists or psychologists - is that being told to 'rest' and do nothing is not necessarily the best prescription.

    And I think that came from his 1990 work relating to the prevalent advice at the time. I was certainly told by my GPs etc. to rest rest rest because you will get better. Didn't bloody work for me and I found it damn frustrating.

    Perhaps no more frustrating than being 'activity managed' or not having a specific treatment in the shape of a medicine, but I think that's where he was and is coming from.

    Of course he was referring I think to those who are not most severely affected. I was (when I referred to this above just now) but it was equally as frustrating. Rest and no treatment. Of course they then knew even less than they do today.

    I still maintain that if you find an understanding deliverer of your healthcare then that is half the battle. Personalisation is key. Until such time as a biomarker is discovered what else is there?
     
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  11. Bob

    Bob

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    Ah, that's an unfortunate misunderstanding...
    I thought you were quoting SW... it looked like a familiar quote, and it seemed phrased oddly.
    Sorry Firestorrm... None of my comments were directed towards you, at all.
    I'll go back and delete them.

    I guess that highlights how important it is to always find the original source of the quotes.
     
  12. Firestormm

    Firestormm Guest

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    No worries mate.
     
  13. taniaaust1

    taniaaust1

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    Wow.. Something I agree with him then. Resting by itself thou important and can esp help PREVENT ME getting worst (by making sure a person isnt over doing it) and by hopefully preventing the illness from getting worst probably improves the recovery chances (hard to recover when one is in a crashing state) but it usually isnt the full answer to this illness either as one needs to have it worked out what the coexisting things are eg POTS, reactivitating viruses etc or other things and having those treated so at least a person can be feeling a bit better and not have ones body so terribly messed up (which in turn could help recovery).

    Symptoms need to be treated eg insomina, hypoglycemia, FM etc etc And I think this is a huge area where the Wesselly beliefs are letting people down as they dont encourage testing and dont encourage treatment of symptoms. They dont even want to recognise most of us have treatable some coexisting issues due to the ME.

    Rest should only been seen an important part of treatment thou many do seem to recover in the first couple of years with just rest.
     
  14. taniaaust1

    taniaaust1

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    There are thou some good psychiatrists around. They do not all believe this illness is being held onto by illness beliefs
     
  15. Enid

    Enid Senior Member

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    I'm sure there are (in the right circumstances good psychiatrists around ) but here in ME have broken the bounds of their limited medical knowledge by trying to wag the dog - shame on the profession.
     
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  16. Bob

    Bob

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    Well, if anyone has any doubt, you've only got to read the following paper...

    I've just had a flick through Wessely's most recent research papers listed on his website.
    Most of the most recent papers are vague, pointless and/or meaningless, IMO, and not worth quoting, but this one is utterly incredible.
    The whole paper is astonishing.
    It's not very long, but it could be very depressing, if you're feeling low, so I wouldn't recommend reading it.
    Wessely is a co-author, and it reads more like an opinion piece than a scientific paper.
    Note that P. White and M. Sharpe are also acknowledged in the paper, for their help with early drafts of the paper.

    I've selected a few of the worst offending quotes.

    (This paper is unusually outspoken and polemic compared to his other more recent papers that I've looked at. The 2005 CFS review paper, which I quoted earlier, is far more reasonable and measured. This paper seems more like an emotional outburst than a scientific paper!)


    And they include a short disclaimer:

    I'm going to get hold of the whole 2005 review paper, and I'll report back about that, but it'll take me a while to get it.
     
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  17. Bob

    Bob

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    By contrast, the following paper seems measured and reasonable, if a little pointless and fruitless, IMO.

    (Further to our discussions about medical instructions to rest vs instructions to keep active, the following quotes seem relevant, from a 2008 paper, co-authored by Wessely.)
    These quotes do seem to contradict the hypothesis that CFS is perpetuated by an avoidance of exercise, and deconditioning, which I think is Wessely's favoured model of illness. At least, that's what he seemed to be saying in his 2005 review paper, and its what the PACE Trial was based on.

    And, similarly, in contrast to the hypothetical model of illness used for the PACE Trial:
     
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  18. alex3619

    alex3619 Senior Member

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    I think, and I could be wrong as I have not done much reading on this lately, that the exercise phobia idea still exists in some discussions, despite the national birth cohort results. However, its about boom bust cycles. We still exercise, we do too much too soon, it exacerbates our symptoms, so we develop phobia.

    If Simon and others at least acknowledged that exercise for those suffering post viral fatigue is a bad idea, it would be a start. That might decrease the rate at which post viral fatigue converts to ME, though there is no way to be sure without a formal study.

    Its been some time since I read this study. I think I will read it again.
     
  19. Bob

    Bob

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    Yes, maybe they have hypothesised that the 'phobia' element comes later in the course of the illness.
    But I've never seen this clarified anywhere.
     
  20. GracieJ

    GracieJ Senior Member

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    Bob Thanks for sharing those papers. No doubt what Wessely thinks, even if he ever says he didn't write the paper! Why would his name be on it?? Walking contradiction, he is.
     

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