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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. Holmsey

    Holmsey Senior Member

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    I think you need to take a chill pill and re-read what I sent, I absolutely know what I'm talking about with respect to anything I state as fact, anything else you'll find I make more room for your views than you appear to be making for my experiences.

    If this is true, and it's fairly represented, and it wasn't just a tactic to stop those who beleive freedom of expression includes the violent blocking of what someone else has to say, I'd still have to ask how it concerns anything I've said.

    Activists, covert speak for people who don't want to come along and listen.


    A very irresponsible way to act when his family is "supposed" to be at such risk - one might ask?

    Yes, great retort, why not post similar sentiments on a thread to women who are concerned about stalkers.

    Buy a dictionary, see if you can grasp the difference between 'criminal' and 'those we don't agree with'.

    This is an outrageus lie, what you probably mean is, no-one has been jailed for having ME, yes, and as far as I'm aware no one has been jailed for studying it either.

    Stick to you own advice, frankly people with opinions like yours have people who really do want more information abandon threads like this.

    Is there any monitors online, I didn't sign up to have anarchic attacks made on my legitimate comments?
     
  2. Holmsey

    Holmsey Senior Member

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    Mark, thanks for this, and I agree with the sentiments. As I said earlier I've only just come to hear about SW, from what he's saying he's moved on, doesn't appear to hold the views he's accused of, at least not as single and sole views. To chastise him for not following what's going on in ME, well, I've had an answer to every mail including my first where I pretty much attacked him for 'doing harm' simply by calling time on XMRV before he 'actually' knew if it was causal. Someone who takes that much time, to write to someone like me, surely, has to be pretty hard working, so if he's not following CFS, but it's also the case that that's no longer his remit, then what do we critisize, perhaps that he's still commenting on it?
     
  3. Koan

    Koan Be the change.

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    Then there is no area of disagreement. I believe everyone should always be dealt with politely and with respect.

    I have read through this thread and find the way we are accusing each other (not you and I, Martlet, everyone) to be very unfortunate.

    I find what has happened between Martlet and myself to be illuminating. We ended up in what appears to be opposition but, actually, are not.

    I do think we should be willing to listen to and acknowledge the enormous injustice which has been perpetrated against many on this forum who have been treated to "care" designed by Professor Wessely. If we cannot listen and empathize, without reflexively apologizing for Professor Wessely, who will?

    It is what it is.

    peace out,
    Koan
     

  4. Hi Holmsey,

    Speaking as someone from the UK who has seen the way Wessely has operated over the decades that I have been ill, I can assure you that this man is a complete snake in the grass. Believe his words if you want to but we here know what he has done and still is doing. He's been saying that he's not involved in ME anymore for ages. It doesn't wash. He is always the first one to pipe up and shout to the media whenever ME is in the news, and in his oh so subtle way always denigrates ME and it's sufferers.

    He works hand in hand with the Government and the Establishment and is pretty much their hired spokesman on any controversial matters, such as Gulf War Syndrome, Mobile Phones etc. He always takes the Establishment line. Are you aware of his involvement in a scandal over here where people were poisoned by a contaminated water supply? The subsequent Camelford Inquiry concluded with the help of Wessely that the poisoned were just basically hysterical and that the long-term health consequences were not real or all in their mind. Many of these people developed cancers that are associated with the aluminium sulphate that was proven to have been accidently added into the water supply. So, do you start to see a pattern here?

    Wessely's a clever man and knows how to talk and charm. That's why the Government use him. As I said, he is a snake who speaks with a forked tongue. Whilst he may not be directly responsible in all the cases of forced sectioning etc, maybe you should acquaint yourself with the case of Sophia Mirza, who was forcibly sectioned leading to a drastic deterioration in her condition and her eventual death. Wessely and his colleagues have made the situation possible in this country that this event can happen. It does, too often. Children are regularly taken away from their parents.

    By the way the details about that meeting where Wessely pulled all sorts of tricks to stop any interested parties attending are true. The people with ME were not there causing trouble at all. You know nothing about it. There was a peaceful demo outside the building, which was policed (they filmed attendees too, doesn't that tell you something about Wessely and the company he keeps?). You might also be interested to know that one of the organisers of the demo was subsequently harrassed, forcibly sectioned for no good reason when psyches, police, social workers barged into her home. She was eventually released after alot of work by concerned people. there was nothing mentally wrong with her. More like communist Russia huh?

    So you see, don't be too taken in with what Wessely says. We in the UK who do know all about him and his methods, learnt that a long time ago. He is still very much part of the UK ME scene. Are you aware of his rotten piece on ME in the New Scientist magazine which recieved hundreds of critical replies and response, the great majority of which were very well argued and full of facts etc which showed his ideas up for what they are.

    Cheers
     
  5. brenda

    brenda Senior Member

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    The sooner the better, that we wise up to what is going on here, with the denial of any chronic illness by authorities and not be mislead by thinking that any one person has some vendetta. It is organised.
     
  6. Mark

    Mark Acting CEO

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    The first and last lines of Alice's reply to Holmsey came from a very, very angry place, and I'm in that place quite a bit myself, so I think I can understand. From my own experience, I know that I often direct that pent-up anger at the most inappropriate targets - those few people who do listen to me and help me - when they say things that are politically incorrect or upsetting. I think something similar has happened here, and from past experience on this forum I have every reason to hope that we'll all make up and stay friends. Remember that, for UK PWCs who've been campaigning around this for many years, this thread is targeting the issue that many of us see as being at the heart of our suffering, and it is draining to have to go back to square one and make the same old case all over again.

    In fact I had almost this identical argument with my dad just a few days ago, and eventually reacted just as Alice did. Since then he's been reading up and I've sent him some relevant links, and I think he's coming round now. Can I recommend you watch the first couple of videos on this thread, to get an understanding of the history of where that anger comes from?
    http://forums.aboutmecfs.org/showthread.php?t=1098

    Both in the large and small scales, the position on the psychiatric nature of CFS/ME has indeed shifted and adapted over recent years to a more nuanced position. Rarely will you hear anyone publicly describing it as a 'purely psychiatric' condition. Instead, when I sit down with my GP, he will carefully try to slip in something about 'mind-body' connections and a holistic approach to healing. The idea that there is no distinction between mind and body really, and that everything is related, has gained a lot of traction in wider society, and it's basically a line of reasoning that you can't argue against any more. The argument goes that all physicall illness is improved by a positive mental attitude, so if you're sick, surely going to see a psychologist can't hurt? It seems so reasonable. But ask this: do they send everybody else with a physical illness to the psychiatrist? Or is it just us that need to think more positively?

    The waters are therefore so muddy that it's more difficult to see things as starkly as they were 10-20 years ago. The position of the psychiatric lobby has indeed evolved and adapted in order to survive. But it's all smoke and mirrors, and you'll have to ask the right questions to expose all the spin for what it is. The key thing to realise is that, for us, psychotherapy is the only treatment available on the NHS, and psychotherapeutic research is the only research that is funded. Although it will be spun differently, on the basis that counselling is increasingly being offered to cancer patients etc (and they want to expand all of that to offer psych treatment to everyone who's long-term sick, and we are really no more than their foot in the door to that expansion), you need to understand that psychotherapy is offered to us as a treatment of a condition classed as psychiatric. There's a world of difference.

    There are some psychiatrists who accept that there is a physical basis for CFS, and others who don't, so the whole field is more nuanced now. But the underlying basis remains the same: they simply do not believe, fundamentally, that our illness is physical. They believe (some of them with great confidence) that we are mentally ill. I find that unbelievably insulting, frustrating, closed-minded, it makes me mad as hell, as an intelligent person, to be patronised in the way I have been, and if you've ever had an experience along these lines with a doctor or member of the public, then bear in mind that the whole point is: Wessely wrote the book on all this for the UK, he made it public policy, and he trained the doctors and psychs to take this approach.

    I think it's actually a transparent case to make that many of us have suffered psychological trauma at the hands of this policy.

    I am not really terribly impressed that on the random afternoon in question, when several of us emailed him, he had enough free time to spend that afternoon emailing us back. It's nice that he didn't just ignore the emails, but to me it merely suggests that he's more of a political animal than a scientist.

    The important thing though - someone will correct me if I'm wrong - is that he remains THE guy who's in charge of CFS policy. He did say that he's not really following the CFS research closely any more, and it's not really his main focus (he also does a lot of other work for the government, including his MoD funding to 'deal with' Gulf War Syndrome, another mass psychological delusion). That may be the case, but correct me please somone, is he not still the guy who advises health policy on CFS?

    I think we have to take into account what many other people have said on this forum about their past dealings with Wessely, and I think in that context your interpretation of your conversation with him may be a little...well, I want to say naive, I don't want to be insulting, but you should understand that you're dealing with a very powerful political figure, a man at the heart of health policy for CFS/ME, and a psychologist. People with a history with him are very sceptical about his apparently conciliatory tone at the moment, and I'm quite sure there's good reason for that.

    This thread started as an attempt to open a dialogue with SW. He shut that dialogue down when he tried to censor the thread by withdrawing his email from publication. (In my view he may even have incriminated himself in that censored email by admitting that he hasn't kept up with the latest research, because last time it looked it was his job to do precisely that). But we mustn't let ourselves be distracted from our goals here.

    I hope everyone will continue their conversations with SW and will use this board to clarify any disinformation and spin they may encounter. But what this has highlighted for me is the need to compile evidence and to make our case in a credible and reasonable way. Can someone point us at such information?

    Just one more thing for us to be working on while we wait for the confirming studies to bring millions more PWCs out of the woodwork and into the light...when that does happen, please let's be ready for them...
     
  7. Mark

    Mark Acting CEO

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    Very important point that. There are many other people involved in psychologising our illness, and a pure personal vendetta will not help us. Wessely is the figurehead but there are many others, in both the UK and the US.

    I'm not going to disagree with you Brenda that it is 'organised', because it really does look that way the more you look into it all. But at the same time, even if it is, it's still important to approach it through the proper channels and proceed as if it were not. Similarly we should remain civil, logical and polite when dealing with Wessely and his kind, simply because that will do more to help our cause. That doesn't mean that people can't take other approaches as well, they can do whatever they like. But somebody needs to campaign 'properly' or we will get nowhere.

    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...
     
  8. Holmsey

    Simon Wessely has ''moved on'' huh?.....

    Wessely is attending and presenting 'research' in somatization conferences
    in 2009, as we speak. He advises the MRC research group - to not research ME CFS as we speak as ME CFS is a form of somatization disorder.

    This is despite a diagnosis of CFS specifically excludes a diagnosis of somatization disorder.

    The list of his crimes are endless. He maintains, lectures on, gives birth to - the psychiatric lie. We all know this, the world knows this. Dead patients know this, patients fighting cancer (due to their label ME CFS) know this.

    In 6 months, swathes of ME CFS patients will throw the label away
    and be re-diagnosed with XMRV and be scratching their heads in disbelief they were accused of being mentally ill by Simon Wessely and chums.

    Heads will roll in court, and it won't be ours.

    You don't state people with ME CFS are ''disgusting'' in medical research and get away with it.
    You don't praise a profesor in English who states ME CFS is akin to Alien Abduction, and get away with it.
    You don't state people with ME CFS should feel ''blame'' and ''guilt'' for their disease, and get away with it.
    You don't prevent critical medical evidence being given to the state on ME CFS - by saying it doesn't meet the 'design brief' and get away with it.

    In essence, you don't commit genocide by stealth and get away with it.


    PERIOD.
     
  9. Please see this video at You Tube for info on the Ean Proctor story in which Wessely played a big part.

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

    "on 3rd June 1988 Wessely had written a letter saying that Ean's inability to speak was " elective mutism"


    Also please read the following article to do with Wessely:-

    http://www.meactionuk.org.uk/consideration.htm


    These might help people who are new to Wessely to understand why he is such a hated figure in the UK.

    Thanks.
     
  10. Athene

    Athene Never give up

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    Question for Holmsey

    Dear Holmsey,

    Do YOU think, in any part of you deep down, that YOUR illness diagnosed as CFS could possibly be psychological?

    I am just wondering if you might turn out, say, in a study like the one done by the Whittemore Peterson Institue, to be one of those 5% who don't have the XMRV virus and don't have any other abnormal blood results.

    I have so many extraordinarily abnormal blood results (paid for privately because the NHS does not offer them) that no reasonable doctor on earth could dispute that my symptoms are physical in origin. I'm just wondering about you.

    And one other point, I do my homework very thoroughly. I personally know three people who have been sectioned and who did not, at any time, fulfil the three criteria listed by Simon Wessley as requisites for being sectioned under the mental health act. A patient like Sophia, unable to arise from her bed, cannot possibly be classified as being a danger to others. Finally, if you perform a search on Google, you will easily discover that the Mental Health Act does NOT actually require these three criteria to be fulfilled, so Simon Wesley was incorrect.

    Athene
     
  11. jackie

    jackie Senior Member

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    I've read this entire thread and my heart breaks for those of you in the UK (and I might add...my own I.D. Dr. says the same thing) Of course, I considered myself fairly well-informed of your plight - but to read it all in one place takes my breath away!

    Here in the U.S. we've started to move out of the "dark" and into the "light" a bit. But remember, the disease that we ALL have (ME/CFS) was called "Neurasthenia" (a Neurotic Disorder) until the first part of the 20th century.

    And after the Incline Village epidemic (which was labeled by "some" to be the result of MASS HYSTERIA...as was the epidemic at the Royal Free Hosp. - AND the epidemic in 1933 here in Los Angeles.....hope that's correct) - a magazine ("Hippocrates") called our disease "Raggedy Ann Syndrome"!

    If we are to make progress we must continue to share vital information and to educate one another. Just reading in publications about what is happening in another Country, can't compare to first-hand accounts by folks living everyday with the trauma and insults to dignity (IMO). So I thank you all.

    In the U.S. we are ahead...but by just a "stones throw".

    The fight continues (together)........jackie:)
     
  12. Alice Band

    Alice Band PWME - ME by Ramsay

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    I'm wondering if our USA colleagues would like a thread in how Reeves is such a great guy, deeply misunderstood and how the USA PWCFS have got it all wrong for all these years.

    I'd not start one as that would be deeply insensitive.
     
  13. Mark

    Mark Acting CEO

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    Excellent post from I Wanna Be Well but it raises questions for me about how we can ever communicate all this to the public, and whether we should even try.

    Here we have someone who's clearly a hired hand to speak for the government on anything controversial with a medical angle, and without having any training in the relevant subject he's wheeled out for all kinds of diverse purposes to say "move along everyone, nothing to see here". It's pretty easy to work out what his role is.

    BUT: what happens when you try to talk about it?! You start off by talking about CFS, and you get some traction, maybe some sympathy. Then you start talking about Wessely and you might get a neutral response "I must go and look him up before deciding". But then, what happens if you bring in all the other threads that spin off through someone like Wessely? Suddenly you find yourself talking about government cover-ups, Gulf War Syndrome, weaponised mycoplasma, genetically engineered viruses, mobile phone radiation, and every other supposedly crackpot theory going. The eyes glaze over, and you have just succeeded in forming the association in your listener's mind between the idea that CFS/ME is a physical illness and the X-Files. Radicals will love you and flock on board; ordinary people will conclude you're a nutter. Not good!

    I don't have any answers I'm afraid, because this pattern runs through our lives like DNA now, whether we're campaigning or just trying to explain to our families, and our experiences suggest that whether we remain calm or let ourselves get carried away, we make no progress either way. In this way we are almost forcibly politicised, forced into an extremist mindset by the extreme nature of our experiences. Those experiences have also taught us so much about the subtle mechanics of oppression that we have been forced to question whether all the other theories that we thought were crackpot, maybe aren't so crazy after all. After all, the same people keep cropping up, the same methods, the same suspicious connections...

    But right now I'm thanking my dad and this thread for reminding me that if we want to achieve anything in ME/CFS campaigning, we're going to need a hell of a lot of discipline to keep from shooting ourselves in the foot. We're going to have to stay on topic, describe the most appalling experiences in calm, dispassionate terms, and stick to the facts - or nobody will listen to a word we say.
     
  14. Marylib

    Marylib Senior Member

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    Ev eryone should read this -- especially me!

    Mark,
    Thanks for this. So true. All the hotheads like myself need a reminder.
     
  15. Mark

    Mark Acting CEO

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    Nobody has done anything of the sort. All that has happened is that Holmsey (a UK PWC from what I can tell), having heard of Wessely for the first time a few days ago, has asked some questions about whether he really is as bad as everyone is making out, and got a rather unwarranted response.

    I strongly encourage everybody posting on this thread to read some more of Holmsey's previous posts, and hopefully then to understand the context, rather than just looking at the last couple of posts. Holmsey strikes me as exactly the kind of person we need: an intelligent, articulate, angry PWC who wants to pin down the facts of the matter rather than automatically jumping on the bandwagon. We'l never get anywhere politically unless we can pursuade people like Holmsey of our case.

    All this seems to be rather like the case of an abuser working their victim up into a frenzy until they're ranting and raving and starting to get violent, then when someone walks in the room the abuser abruptly transforms themselves into a meek and mild innocent victim who's being subjected to a torrent of abuse for no reason, while the victim looks like a rabid nutter. That's what's going on here, please let's not fall for it! Instead, answer Holmsey's questions rationally and reasonably: by the time that process is finished, we may have the basis of our court case!

    Athene, I'm sorry to reply to you for the first time in a negative context because your previous posts have made a big impression on me and I have enormous respect for you. But I can't understand how you can question whether Holmsey's CFS is psychological. That seems like a cardinal sin to me, are we now reduced to treating each other as we ourselves have been treated?

    Holmsey, I haven't been on this forum long, but I would again encourage you to stick around and keep asking the sort of questions you are asking. I think this forum's fantastic, and we all need to stick together.
     
  16. Martlet

    Martlet Senior Member

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    Mark

    A great, balanced post.
     
  17. Martlet

    Martlet Senior Member

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    I didn't know you knew my ex-husband! :D
     
  18. Alice Band

    Alice Band PWME - ME by Ramsay

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    OK, Mark, I'll bow out and leave you to it. My experience has been different in these situations.

    Will check up again in a few weeks to see how it goes.

    Please let us know if your approach works in the end. Good luck.
     
  19. Mark

    Mark Acting CEO

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    Actually that was a woman I was describing - glad to have the opportunity to wander off-topic and mention that many women also abuse their partners using exactly the same techniques, the main difference being that men never dare to talk about it for a variety of fairly obvious reasons.
     
  20. Martlet

    Martlet Senior Member

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    Sorry for keeping this off-topic for a moment longer, but I know that there are such women. A male friend of ours was a victim. Took a long time to draw him out, and even longer for him to get help.
     
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