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Simon Wessely on XMRV

Discussion in 'XMRV Research and Replication Studies' started by condra, Nov 11, 2009.

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  1. meandthecat

    meandthecat

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    Isn't Psychiatry the 'God of the Gaps' , as medical science advances superstition retreats. RCT's are all psychiatry has, more circumstantial evidence than objective fact, not really the basis for a science.

    I think they are all chancers; just some do more harm than others.
  2. Mark

    Mark Acting CEO

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    I have some limited experience of 'sectioning' in a different context, so I have some vague recollections of it. The formulation of the law is indeed along the lines of what Wessely quoted, and it does also ring a bell with me that Athene's right, when you get to the small print the act doesn't always require all 3 criteria to be fulfilled, but the overall principle is as stated. It seemed worthwhile to consider how easily any PWC could fall into these criteria:

    "People can get sectioned under the mental health act if they are
    a) mentally ill
    b) refusing treatment that is likely to help their condition
    c) a danger to themselves or others "

    Clearly here, it's being a danger to themselves and not to others that is the relevant clause, and that's a typical confusion in the wider application of the Act; for some reason the "to themselves" part never seems to register with people. It is often contentious centring around the question "is the person at risk of suicide?", a case which can pretty much always be argued with any depressive or psychiatric condition.

    So I guess that any PWC who were to refuse CBT could potentially fall under Section 28. I'm guessing that the case for sectioning a PWC would be:-

    1. They are already diagnosed with CFS, a psychiatric condition, therefore they fulfil (a). (although I'm shocked that CFS can qualify as a mental illness in this context)
    2. They are refusing treatment. (as does any PWC who knows what's what).
    3. They may die if they lie in bed all day and don't eat properly. (very questionable)

    As I recall it 20 years ago, sectioning was considered a fairly extreme step, and required a panel of psychologists and a magistrate to make the order. It was also considered a very frightening step, and all the mentally ill people I worked with were terrified of it; they could be easily controlled by the mere threat of sectioning. It was considered to be a one-way ticket to a living hell.

    I also recall quite clearly that there were a lot of people out there who are very obviously mentally ill, not being treated, behaving in rather scary ways, and still would not be considered ill enough to be sectioned.

    Until a few days ago, I had no idea that people with CFS had been sectioned, and I found that incredibly shocking. It seems like a grotesque and completely inappropriate use of the act to me. The purpose of section 28 is to protect the public from someone who is dangerously insane. To apply it to somebody with CFS is absolutely outrageous, and I can't imagine the anger and bitterness such a person would feel.
  3. Mark

    Mark Acting CEO

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    Having worked with mentally ill people who clearly needed help and received treatment that helped them a lot, I would have disagreed with you a while ago and said that there is some good in psychiatry.

    The last few weeks have changed my view though. I had never considered CFS in a psychiatric context because of course it's a physicall illness, as I already knew 10 years before I caught it, and only recently have I realised that the bizarre behaviour of some doctors and individuals towards me over the years is now explained by the fact that they actually did think I was mentally ill!

    Strange as it may seem, I had never realised that before now, because they had always...well, not denied it (I would have walked away if they had), but they started wittering about 'mind-body' and holism. The training video for GPs opened my eyes because if my first GP hadn't seen that video, he'd definitely had similar training, and suddenly I recalled all those years I wasted telling him about my symptoms when I now realise the reason he couldn't even seem to see the physical symptoms I showed him was that he had made his diagnosis long ago. So weird: it had just never occurred to me, it took me 2 years to even realise that this was what was in his mind, and even then I never realised until last week how long he must have held that conviction.

    What was most shocking to me, watching the videos, was that they are trained to lie to you, they are trained not to mention anything psychological; instead you get this gradual drift into therapy that cautiously, gradually starts to question the reality of your illness. Utterly disrespectful, utterly dishonest, and in my eyes, unforgiveable behaviour.

    So yes, I would now agree, because if they can do this to us, how can we trust what they are doing with anybody else? The entire profession is in disrepute as far as I'm concerned. And for that matter, I'll never, ever trust another doctor again as long as I live.
  4. Martlet

    Martlet Senior Member

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    I found that comment so sad, but understandable. All being well, we hope to move to Germany next year (depends on if we can sell our house and how much for) but I must admit to being scared. We would still be able to see American doctors on US military installations, but even that frightens me after some of what I have read here.

    I can't fault my doctor, which is why I am scared to leave him. Before we moved over here, my husband asked if he treated CFS patients. He said he did. A few months after we arrived, he had tears in his eyes and apologized to me, saying that his patients were FMS ones, but he had not realized it until he saw how very sick I was. Until then, he had thought they were one and the same illness. How could you fault a man like that?
  5. annunziata

    annunziata Senior Member

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    That sure leaped out at me, too. I understand and am so sorry you feel that way. There were doctors who were terrible to me personally and then there are the Reeves-Straus-Wessely brigade who've caused virtually immeasurable harm. My feelings towards the medical profession were certainly changed by having this disease...

    My father was a doctor, and although he died young he left me with certain beliefs -- that a doctor is a scientist and an intellectual, and should never put theories ahead of data. I was stunned at the glib, self-satisfied hypothesizing about this illness. When I got sick, I expected to be taken seriously and to be helped. I've certainly been very angry at doctors.

    But then, there are indivudals like Dan Peterson, Nancy Klimas, and my own doctor, Susan Levine, who always believed me and supported me.

    I do understand your feelings but hope something will give you a little faith again.

    Best wishes,

    Amy
  6. Mark

    Mark Acting CEO

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    I don't doubt there are some wonderful doctors out there. But I've always had sneaking doubts about the ethical code they are trained to, because that code seems quite happy to withhold information from the patient if they believe it to be in the patient's interest. I have never bought into that ethics, I think it's my right to be told the truth, come what may. Extreme POV perhaps, but that's what I believe.

    So that's the background: and then, I had a doctor who I thought was wonderful. He had plenty of time for me, he listened, he stayed quite late to do so, I could always get an appointment, and he seemed like a nice chap. It was just a bit frustrating that I didn't seem to be able to communicate everything to him properly, and he insisted on treating "one thing at a time" (picking a minor symptom and giving me standard meds for that for a few months before considering the next thing).

    Only after several years with him, when I jokingly said to him "I hope you don't think I'm being a hypochondriac by mentioning all these symptoms, some of them aren't terribly serious but I'm just mentioning them in the hope they'll give you a clue to the bigger picture", and he gave me a meaningful look and said "why do you think there's something wrong with being a hypochondriac", only then did I suddenly realise that he did believe that, all along.

    Only when I saw the GP training videos the other day and recognised his entire approach did it twig that he made this diagnosis almost from day one, and that this blinded his entire perception to such an extent that he was unable to even see the serious fungal infection I was showing him. "Look, look at that!" ... "I can't see anything there" ... it was truly bizarre.

    The thing is, he successfully deceived me for years: diagnosed me and then withheld his diagnosis.

    On then to my current GP. Nice chap. Very amenable. Claims to have never heard of CFS, Fibromyalgia, the test for FM with the sensitive spots - he's just never heard of any of it. By now, I figured this could actually be in my favour, and anyway, he refers me to almost anybody I want to see, prescribes whatever I ask for, because by his own admission he hasn't a clue. I see him purely as a bureaucratic route to medication.

    But still I wonder: was that a placebo? Was that blood test what he said it was? How come he claimed that blood test he was ordering was a test for gluten intolerance yet the surprised nurse who took the blood assured me it definitely wasn't because the gluten test is completely different, and my doctor friend tells me there IS no such test?

    I can like my Doc, he can be a decent chap and maybe even help me, but trust him? If he didn't deceive me sometimes, that would probably be unprofessional of him, so what basis is there for trust?
  7. Holmsey

    Holmsey Senior Member

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    Yep, me to, and in case there's any confusion, I'm still here.

    Vested interests, and I've nevers suggested SW doesn't have those, seems almost to dictate this is the way it is, thing is though, when you look close there's always good work along with the bad. Establishement figures from the PM down are always quick to sing their own praises when they get it right but 'I got it wrong' is never something you here them say, so why look for it.

    So far SW has done nothing but provide me with sound pubicly available peer reviewed scientific data, beyond that I've twice taken specific claims posted on this thread and allowed him to respond. He's outlined the conditions required to have someone sectioned here in the UK, it's my intention to run this past a senior mental health care worker whom I'm friends with at the weekend, if it doesn't scan I'll post it here.

    As to being taken in by SW, taken into what? I'm not his PR man, he hasn't asked me or even aluded to an interest in me posting these threads, in fact the man hasn't even asked where I'm getting the information that leads to my questions.

    There's opinion and there's fact, the two aren't the same, what I'll say for SW is that so far in my correspondence with him, which only came about because I joined in the 'lets all let SW know what we think about his comments on XMRV', is that he's keeping his opinions to himself and instead sending me peer reviewed papers. So, in my opinion, if he's up to anything then it's as someone suggested earlier, he thinks the truth is about to be revealed and wants to come accross as our friend. But to the veracity of that suggestion, I guess only SW would know.

    Also, we need to remember that it's not only people with ME who get sectioned, in fact at one time you were liable to be sectioned for being female, young, unmarried and promiscuous. The list of errors associated with the birth of psychiatry is both long and tragic.

    Thanks for you comments.
  8. valia

    valia Senior Member

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    I am sorry, I have read and re-read this and I just cannot believe that it is possible for an ME sufferer in the UK with Internet access NOT to have heard of Simon Wessely (or even Simon Wessley)?
  9. Dx Revision Watch

    Dx Revision Watch dxrevisionwatch.com

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    Co-Cure Wessely response

    @ Declan


    Could you confirm please, Declan, that the response to which Professor Simon Wessely is referring is the email that was published by you on Whittemore Peterson Institute Facebook, which I republished on my own site (ME agenda) and via Co-Cure on 12 November, together with a response from the Department of Health received by a third party?

    You may recall that we had a brief exchange on the WPI Facebook site in connection with the republishing of his response.

    The Co-Cure post in question is:

    [CO-CURE] ACT: Two responses around XMRV: Prof Simon Wessely; Dept of Health 12 November 2009 20:50

    Co-Cure archived here:

    http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0911b&L=co-cure&T=0&F=&S=&P=3076

    On ME agenda site here: http://wp.me/p5foE-2mS


    Professor Simon Wessely is no ingnue when it comes to providing responses to enquiries from members of the public.

    If Professor Wessely is not happy with you having published his response on the Whittemore Peterson site without his prior consent or for it to be published elsewhere, perhaps when responding to enquiries from members of the public he should give consideration to clarifying firstly, whether he is responding in a personal capacity or on behalf of King's College London and secondly, whether his response may be republished.

    Under the circumstances, I will remove his response from my own site and I will contact Ray Colliton, today, and ask that he removes the Co-Cure mailing from the Co-Cure online archives.

    BTW, I am given to understand that Professor Peter Denton White is on the Jan van Roijen "Help ME Circle" mailing list and that he has also, on occasion, submitted mailings to Co-Cure in response, for example, to commentaries authored by Margaret Williams.

    Suzy
  10. catch

    catch Senior Member

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    Holmsey, if you get a chance you might want to read this (long) article on Wessely's history with ME/CFS and other illnesses. Get his views via email, but also have a look at the information he is less likely to share with you. This particular article is referenced so you can follow up any of the quotes attributed to him and check out the studies that contradict his views.
  11. I have to say that that thought crossed my mind too! With regard to the peer reviewed offerings he 's given you, the trouble is Wessely and his "friends" tend to work it so their work gets reviewed by peers that, shall we say, are closely related and have the same ideas about things! As I said, they are very clever.

    Anyway, let's all hope that with further study the Wessely's of this World will not matter anymore to all of us with this rotten illness and we can forget about him et al and let them move on to their next poor targets.

    Cheers.
  12. Holmsey

    Holmsey Senior Member

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    Thanks, sounds more like where I'll find the source of the, dare I say 'hatred'.
  13. Holmsey

    Holmsey Senior Member

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    And...ah, I've said something positive about what I now realize is a shared hate figure so I must be a liar...just like him?

    In the words of my sainted gran, if you've nothing nice to say say nothing and so.
  14. valia

    valia Senior Member

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    There is nothing nice to say about ME or the way ME sufferers have been treated/abused for the last 25 years or so by Simon Wessely and others

    .....And you are the first ME person I have come across that had anything positive to say about Simon Wessely and you have only just heard of him.


    My not so saintly granny, would have given him a piece of her mind
  15. brenda

    brenda Senior Member

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    Mark

    I agree entirely.
  16. Martlet

    Martlet Senior Member

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    It saddens me to see this thread disintegrate. People can disagree without being disagreeable. Can we not stick to the topic without getting personal? Since words comprise only about 7% of human communication, we are naturally very limited, deprived as we are of tone and body language cues so can we not assume the best? My sainted grandmother would have given everyone a clip around the ear and told us all to play nicely!
  17. Hi Mark,

    You said......

    "Instead of arguing, we should be organising. Instead of ranting, we should be setting up groups (UK campaign group on this forum anyone?), compiling information, discussing strategy... "

    I totally agree. This is already being done in other places and sites if you are interested. Try seeking out the Yahoo group MEActionUK for one example. There are many of us who are doing these very things. You sound like someone who has got a lot to offer.

    Here's the link to MEActionUK:-

    http://health.groups.yahoo.com/group/MEActionUK/

    There are other people and groups too all working for the same basic goal, a better future for all ME/CFS patients, wherever.

    Cheers
  18. Mark

    Mark Acting CEO

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    Thanks - I've checked out MEAction and I'm very impressed!

    I don't know much at all about UK ME/CFS groups (because I've been diagnosed MCS and mainly thought of myself as MCS until a few weeks ago when the news broke and I looked again). Also because all the groups I have come across seemed either too weedy or outright NHS toadies. Any other worthwhile groups I should know about (sorry, feels like a lengthy and unreliable google search so I anticipate better answers here!)
  19. Mark

    Mark Acting CEO

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    Also: can we resurrect this disintegrated thread now? Anybody had any more correspondence, or any thoughts about strategy? (maybe wise to discuss the latter in a less public environment...)
  20. orion

    orion Senior Member

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    Hi Mark,

    In my opinion that's not extreme at all. Indeed, it's very refreshing to finally come across someone who feels the same way that I do. I've being saying for a long time, to anyone who'll listen, that the traditional medical code of ethics is fundamentally incompatible with a respect for patients' rights.

    Doctors have far too much power in our society and yet no one seems to challenge it. For example, 20 years ago when the data protection act was introduced the one group of people (apart from the government itself) that was given exemption was the medical profession. My doctor can say anything he wants about me in his notes and I don't have any legal right to see what he's written. He doesn't even need to tell me that the notes exist. It's truly scandalous.

    And don't get me started on the prescription system. Why is it that mentally competent adults are trusted to make decisions for themselves in every area of their lives except their own healthcare. Doctors treat us like kids. I'm not allowed to take anything stronger that an aspirin without first obtaining a doctor's permission. It's insufferably patronising.

    What's really depressing is that even many people with ME just don't seem to get it. I tried recently to persuade the ME Association to start pressurising the government to allow patients to obtain unproven/experimental treatments, at their own cost, without the need for a doctor's prescription. I just got fobbed off. They wouldn't touch it. They weren't even prepared to debate the issue with their members. Their craven attitude towards the medical profession, and anyone else in authority for that matter, is utterly pathetic.
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