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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. Mark

    Mark Acting CEO

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    Welcome Back Holmsey!

    Jeeez Holmesy, you, me and Cold should meet up for a pint one day, we'd get on like a house on fire! Boy would that be a party!

    For everyone who's shut their ears to Holmsey, suggest you unblock and check out what he's got to say, he makes some good points IMO, even if he is...shall I say...a tad aggressive when crossed...please don't shout at me for saying that Holmsey, you know it's true...

    Perhaps you haven't discovered the Private Messaging feature top right Holmsey, or you'd have seen my response re: Direct Action. I was disappointed not to get a reply, perhaps something in my response didn't appeal? There's plenty of action going on here mate - direct, indirect, whatever flavour appeals.

    I have to point out to you that while it might seem a bit wet to you, practicality is that when you're trying to be productive in a big group, it doesn't quite happen if everyone starts shouting. But if ye can join in in the spirit of "we're all in this together", and provided of course you aren't a bespectacled genius shrink, then maybe there's room for you here after all.

    Just watch what you say about my mate Cold, who has a unique style too but is not IMO insane (but then I'm not a shrink ha ha). Cold's been through a bit of a hard time in recent decades, to put it in ridiculously mild terms. But then if you followed up my suggestion of watching the vids you already know that. If you just forgot to mention your forced hospitalisation in your testimony then fine, guess you can understand what Cold's been through and you're in a position to criticise. If not...then give everyone their fair head of steam to express themselves and if you don't like it, just ignore it. There's a cool 'block' feature which Cold helpfully explained earlier. :)

    Guessed you were in IT, me too.

    Hope my new sig doesn't wind you up by being too soft.

    Try not to over-react to people's weaknesses (we all have 'em), realise that the world you've been thrust into is more painful for some than you or I can possibly imagine, and I'm sure we're all going to get along just fine.
  2. Marco

    Marco Old blackguard

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    Near Cognac, France
    I've kept out of this thread but I'm with Holmesy on this one. If we can't appear reasonable to one another what chance do we have with others.

    Maybe its a cultural thing? Border Rievers and us Ulster Scots probably have a lot in common - proud, self-reliant and reserved. Personally I cringe when I hear terms like, hell, holocaust, Nazi etc. "My 3 years of ME hell" just sounds too tabloid sensationalism to me.

    Perhaps I haven't epxerienced as much as others - just 23 very unpleasant years leading to me losing my career at 42 and being unemployable -likely for life. But "Hell" - I don't think so. The Holocaust was hell? Rwanda was hell, a kid dying of bone cancer is probably hell and the Belgian bloke fully conscious in a coma for 23 years probably also experienced some sort of hell -but not me.

    As for Dr Wessley, he does have a lot to anwer for, as do many others, for diverting attention and funds away from finding a real cure but CBT is a perfectly legitimate therapy used in many chronic illnesses and lets face it there hasn't been a proven medical treatment to accompany it. As for the labelling of ME as a psychological illness, what do you expect from a psychiatrist? Plus many others had to have been complicit to allow this to happen. To believe that the 'caring profession' is immune from egos and empire building is just naive.

    I appreciate that many have a great deal of reason to be angry - more than me no doubt. Fine - but the smart thing is to be as angry as you like in private but appear reasonable in public. Otherwise you just provide ammunition for those who would like to brand us all as hysterics.

    Look on the bright side. If the XMRV research pans out would you like to have Dr Wessley's CV?
  3. Being angry is hysterical?
    Haven't I head that somewhere before?

    Don't men say that who grab women by the throat?

    Another great one liner.
    What ever next.

    Look up: 'Quietism' because you personify its doctrine.

    Now you're talking like a rapist again and your friend Holmsey.

    You're welcome to your thoughts, just don't tell me if I am ALLOWED to be
    abused or not.

    WHAT ON EARTH?
    Divide and conquer huh?

    Let me tell you this, you step one foot inside my life
    and it'll knock you out cold before I do.

    Don't you EVER, DARE tell me, what I am allowed to feel as an emotion.
    My feelings are mine, not yours.
  4. Levi

    Levi Senior Member

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    Following this thread

    Holmsey,

    Sorry to see you go. I was once lot like you in the early stages of my illness; angry and still in denial that I was dealing with life changing illness. Twenty-five years of additional illness have brought me around to a more passive way of dealing with things, and an appreciation for each and every one of the members of the "broad church of ME/CFS sufferers". Many are beautiful spirits with great insight and finesse for the feelings of others.

    To be fair, I should mention that "broad church" is a quote of SW. I never knew about SW until a few weeks ago because as you are about to do, I opted out of the CFS/ME community decades ago. I came back due to XMRV findings. In a few short weeks of reading his works, I have come to believe that SW is a diabolical man, and a true sociopath. Which makes him interesting to me, but not to be believed at any cost. Should sociopaths be forgiven? Its food for thought.

    Take care and good luck. A man with your responsibilities will be sorely tempted to push the envelope of the disease for the sake of survival. No judgement, but watch the painkillers because with this illness, you can't afford an addiction on top of all else.

    I read the back and forth in this thread and it makes me sad. Innuendo that you are a troll and not a true sufferer, etc. The "broad church" CFS/ME group is about to be tested, both figuratively and literally. Some folks will be XMRV positive XAND sufferers and automatically accepted into the fold, others will be in limbo with Reeves disease. Reading the suggestions that you try CBT/GET etc. by others, those folks will be suspect if their manner or ideology is not conforming.

  5. Koan

    Koan Be the change.

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    Dear Holmesy,

    It is unfortunate that you feel as though you have been treated badly here. It is doubly unfortunate that you feel it has been sufficient to drive you away. Please consider that there are many threads here where you may discuss aspects of your illness (XMRV, various treatments, etc.) which will not inspire such emotion.

    I do not know why you take so personally forum members feelings about Prof. Wessely. I'm sure he would be gratfied to know he has such a devoted champion. Please consider that how people feel about Prof. Wessely has nothing at all to do with you.

    Yes, I understand that you have been engaged in passionate dialogue here on the forum regarding him but you are free to exit same. It really benefits no one that you identify so closely with him as to be unable to not take personally the very real, and reasonable, feelings other members have regarding the effect he has had on their lives.

    I remain confused as to why, even if you cannot feel compassion, you cannot simply leave it be, sir.

    Marco,

    I have often felt as you do when I hear people with ME say that it is the most awful disease in the world or that their suffering is beyond what people can comprehend. I think you raise some relevant points and your examples are good ones.

    During years of push/crash 85% remission my job was to travel the world documenting poverty and our efforts to combat it. I was in Dhaka, Bangladesh, one day in the old city where it is very crowded and the streets are little more than lanes.

    My attention was caught by a makeshift cart - bits of old wood banged together, balanced on bicycle wheels - being pulled through all the chaos of the street by ragged children. Upon the cart lay a man with no arms and no legs - he had only a torso and a head - and people were putting coins on him as he was dragged along by the children, the eldest of whom was no more than 8.

    I was horrified by this degree of suffering in this suffering place and wanted to look away. I was filming but turned off my camera - I could not exploit this life, not this one.

    I tried to turn away but I was such an oddity, so out of place, that I was always surrounded by a crush of curious, noisy people. I sometimes felt a bit of panic in these situations - suddenly aware of how perilous the situation was and how quickly it could skid out of control. Then, my anxiety was cut through by the sound of warm laughter. I turned towards it and it was the man on the cart.

    This lovely man and the children were all looking at me and gently laughing at my predicament. They were not living the hell I had imagined. I do not mean to say that their life was easy, only that I had no frame of reference and could make no accurate assumptions. They soon grew tired of me and moved off to collect the coins they collected every day - boys and man involved in a joint effort to support themselves; poor people in the ramshackle houses offered an opportunity to share what they had, be generous and count what blessing had come their way.

    What I am trying to say is that suffering cannot be measure simply by what has happened to someone or what they are enduring in any kind of objective way. There are healthy people living in mansions who live in torment of one kind or another.

    So, Marco, I agree with you that what we face is not usually "hell". But we cannot know what ingredients go into making hell and we cannot judge another. How many people have taken their own lives because they could not bear a personal hell?

    I anticipate that we agree. I hope I am not being presumptuous.

    Peace out,
    Koan
  6. Mark

    Mark Acting CEO

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    What's in a word, eh?

    I guess not everyone understands that the history and origin of the word 'hysterical' is inseparable from the history of the psychologising of our illness, a source of pain for many over the centuries. They really should, but not everybody's perfect.


    All kinds of people say it, they just don't all mean the same thing by it. And therein lies the problem.


    I should do that myself but I can't be bothered. Expand. I'm guessing it means lying down and taking what somebody dishes out to you, or appeasement, or something. Which I rather doubt is a fair description of Cold, unless you consider that when you smack someone in the face, it's their fault for being there. Nor is it a fair description of someone who, rather than lying around wallowing in despair, actually somehow manages to communicate - to some but not to all - the depth of the injustices that have been perpetrated on them. Injustices which many did not survive, and but for Cold, maybe nobody would know their names. Quietism. Must look that up some day.

    Missed that bit, but whoever said whatever, I'm sure they didn't mean it.

    Unite and Overcome.

    Almost certainly true, and lets hope that Holmsey hasn't experienced something that makes him able to see Cold's reality and be untouched. But I'm not making any bets until I've met you both face to face. :D

    Tip for you Cold. I learned this only recently and it's perhaps the most powerful truth I've learned in recent days. No wonder my Dad's been banging on about it all these years. I couldn't possibly believe it, it sounded ridiculous, but it's true:
    Your words would have had more power with some very slight adjustments, thus:
    "Don't tell me what I am allowed to feel. My feelings are mine, not yours."

    You are making each other angry, but only because of ridiculous, meaningless differences about the way you use and understand words, and the way to overcome that is to feel the anger, to write your posts in anger, get it out of your system, and then sanitise them and calm them down before you post them so that they still say the same thing, but in a calm, reasonable way.

    Believe me, if you can do that, you will become more powerful than you can ever imagine.

    Good luck with it, love you both,

    Mark
  7. Esther12

    Esther12 Senior Member

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    Are two different issues getting confused here?

    1) Is the anger many feel against Wessely justified? and 2) Will this anger make it easier for others to dismiss the concerns of CFS patients?

    They are quite unrelated, but I feel like some comments fail to recognise this.

    I think the anger of many black people being oppressed during the 50s in America was justified and also served to help their opponents dismiss them. I expect the same will be true with the anger of CFS patients.
  8. Mark

    Mark Acting CEO

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    Esther scores on her debut! Welcome! Perhaps someone should start a couple of separate threads...or would we just confuse ourselves even more?

    My current opinion is:

    1. Depends what you mean by justified.
    2. Yes, if expressed in the wrong way to the wrong people at the wrong time.


    It's worked that way since the dawn of time, but they still made some progress, which they wouldn't have done without the energy of anger. But we're something new. They won't be able to dismiss us.
  9. srmny

    srmny

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    Hell?

    Mark,

    I do understand and appreciate all you have said - up to a point. In fact, I do believe the first few years of my illness were pure hell. My family would agree. Looking back on them, suicide would have been a reasonable reaction. I do not know how I will react if I am ever in that position again. I stopped sleeping. I routinely was awake 3 days straight before I would sleep. I was grateful if I could sleep 4 hours at a time. This went on for many months and I believe it nearly killed me. Prescription sleep medications, tranquilizers, pain killers did not shut me down. My endocrine system seemed to be on overdrive but of course I was being treated by a psychiatrist. He was very good to me. He quickly realized I was physically ill and he tried to find a doctor who could help me. He held my hand while we tried to both knock me out and figure out what was wrong with me. In fact, my endocrine system was failing and it took many years before it was restored.

    That was my life for the first few years. I don't know if that experience is common to everyone with CFS. Perhaps that is part of CFS or perhaps that experience only triggered CFS. I don't have any way of knowing.

    I don't know your experience of CFS or any experience other than mine.

    I think we should not speak for anyone else. I do not dwell on those years but they are important to my CFS experience. Those "hellish" years serve to remind me that I must take care of myself.

    Take care of yourself.

    srmny
  10. Holmsey

    Holmsey Senior Member

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    Mark, pints I like. You know what us IT guys are like then, always last to figure out how the finished product works, thanks for the reply, check you private mail.

    Marks right, we’re all in this together, look, I may have a manner that doesn’t suit everyone but I’m for real and I’m genuine.

    Haven’t been hospitalized, although my wife says I should have been…but that was before I got ill. Point taken though, no offence Cold.

    Sig is cool.
  11. Holmsey

    Holmsey Senior Member

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    Marco, fellow Celt, I like the thought of being in a fight with you on board.

    This is a fight, and to win it we have to make sense, this is a public forum but it’s also a tool to figure out what our gripe is and the constructive argument that proves it’s legitimate.
  12. Holmsey

    Holmsey Senior Member

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    Not sure who you're replying to here, the final quote is mine but the opening one isn't. Not sure I like my name, and it is my name, it's actually what my friends call me, not sure I like it in the same sentance as rapist though.

    Hopefully it's not divide and conquer, hopfully, instead, we can figure out what we stand united against and then chanel some of that anger in a cold and rational way.
  13. Holmsey

    Holmsey Senior Member

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    Levi, it was my intention to opt out of this thread but not the whole deal, hey, we're stuck with it until we're cured or get better / go into remission?

    Had a change of heart after reading a couple of replies, there's lots of anger out there, anger has energy, imagine what could be achieved if you could get it all pointing in the same direction for just one day?

    Thanks for the advice, acupuncture works for the pain but doesn't last, and costs a fortune. Have good spells as well, but, and this makes me sad, I'm comming to realise that I really am one of the luckier ones, take it easy.
  14. orion

    orion Senior Member

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    Holmsey, this has already been said but I think it's worth reiterating. I'd strongly urge you to reserve judgement on Wessely until you've read more widely about the man. There's an enormous amount of highly incriminating evidence about him out there. A good starting point would be to google for a document entitled Denigration by Design. Even allowing for a few inevitable inaccuracies, and possibly some remarks quoted out of context, it's utterly damning.

    What wrong footed Wessely in the past was the rapid rise of the internet. It's been a game changer in more ways than one and it took Wessely a long time to adjust. Suddenly anything he said could be widely disseminated at the click of a mouse button. In the early days he got caught out time and time again saying one thing to fellow doctors and then something completely different to the patient community. He's also frequently contradicted himself over the research itself. For example, he can't seem to make up his mind whether ME is heterogeneous or whether it should be lumped together with a bunch of other diseases of unknown cause under his made up title of functional somatic syndrome.

    However, Wessely has raised his game in recent years. Despite his obvious penchant for self-publicity, we can't rely on him falling into any more elephant traps of his own making in the future. His latest emails are frighteningly plausible. But that's not really surprising. Wessely knows damn well that any emails he sends out, especially to complete strangers, are likely to end up on multiple websites within hours, and he will word them accordingly. Whatever Wessely is, he's not a fool. He must therefore be judged on his entire record, not on a few helpful emails.
  15. Holmsey

    Holmsey Senior Member

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    This isn't being treated badly, the people who's wages you pay not taking your illness seriously, that's being treated badly.

    It's not hard to see that you have a kind and gentle soul, enen the name choice gives it away, don't think I lack compassion just because I have sharp edges.

    Life is a sacred road,
    the hearts we touch its milestones,
    our example, the lamp which
    lights its way.


    I do not know why you take so personally forum members feelings about Prof. Wessely. I'm sure he would be gratfied to know he has such a devoted champion. Please consider that how people feel about Prof. Wessely has nothing at all to do with you.

    Yes, I understand that you have been engaged in passionate dialogue here on the forum regarding him but you are free to exit same. It really benefits no one that you identify so closely with him as to be unable to not take personally the very real, and reasonable, feelings other members have regarding the effect he has had on their lives.

    I remain confused as to why, even if you cannot feel compassion, you cannot simply leave it be, sir.


  16. Holmsey

    Holmsey Senior Member

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    Sorry Koan, I really messed up the quote tags on this one.
  17. Holmsey

    Holmsey Senior Member

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    Ruffling feathers is sometimes the quickest way to get people to the point, what's worrying here is that there's so many points. I've 'absolutely' no doubt that SW is part of the problem, but thinking it, even beleiving it and proving it are two different things.

    First you need to decide, who do I want to prove this to...and why.

    Well, our aim surely is to get better, none of us really want to be like this, do we? So who can help us do that...that would be the medical profession and the scientific establishment, but hold on, who's Wessley, well he's part of that profession, and that establishment.

    See the problem, if you can't take on the spokesperson you can't take on the scientific community, if you can't get to them you have to get to the fund managers, now that would be the government, but who's Wessley, well, funnily enough, according to this thread he's their advisor, so what do you do now.

    It's my belief that you can't beat the Wessleys of the world by taking them on at their own game, firstly because they're not the real problem, do you think for one second if Wessley was an embarassment to the Government we'd be wasting this much energy on him?

    Our issue is with Govenment, they're spending our money in the wrong places not Wessley. Now, if you want policy change and you want it fast get some large fraction of the estimated 240,000 suffererers, their carers and those who care for them to land, on the same day, outside parliment. Refuse to leave until your forcibly removed, great coverage, or your elected representatives, with their maticulously prepared case, are heard.

    To do that you need the maticulously prepared case, and we all know their is one.

    Who's getting CBT, how many are under PACE, what's the stats, I asked Wessley and he swerved it. Ask a politician in public why we're wasting money, and more time, on protocols with not scientific basis and no evidencial success in the current climate while science elsewhere has raised questions regarding XMRV, where do you think the press with take that.

    Have you seen the British public when you parade as much as a Parrot with a broken wing on television and tell them it's the PM's fault. Imagine the reaction to thousands pushing wheelchairs down downing street and asking the REAL question, why have some of us been ill for decades, bad science or to save money, I mean are the UK government stalling hoping that someone else will foot the bill or what? Lets orgainise and ask.
  18. joyscobby

    joyscobby Senior Member

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    Homsley if a Scot then Scotland Diffirent Kinda

    Homsley, being a fellow Scot thought it worth pointing out to you that although NICE and Wessely has had an influence in Scotland. But our getting our own Government 10 years ago and more recentky a SNP government (more free of labour and therefore Westminster control) has meant that there are now changes ahead in Scotland. Please see the consultation document linked. There is also Good practice Guidlines for GP (launched in may but not diseminated due to swine flu) not in the public realm but out there.

    Anyway, here is the link. I hope it help you to move forward
    http://www.healthscotland.com/uploads/documents/9715-Report - National Consultation Final.pdf
  19. Koan

    Koan Be the change.

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    Aw, Holmesy,

    I love the way the quotes got all tangled up and you can't tell who's saying what anymore. That's exactly right now, don't you think? That's just what happened. And, it's over so we can all move forward together. I want to thank you for being so good about my being so hard on you.

    Please take the opportunity offered to find out more about SW. I'm not even over there and I find what he has done heartbreaking and infuriating - Ohm!

    I'm another Celt. Should this new peacefulness not hold we can all run naked at each other screaming.

    peace out,
    koan
  20. joyscobby

    joyscobby Senior Member

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    koan are you providing the blue paint

    you may misname and abuse our illness but you will never take our freedom!
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