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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. Koan

    Koan Be the change.

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    SW is also expendable to the powers that be. He is not a firmly entrenched member of the old boys club with a pedigree going back generations - this stuff still counts over the pond - he is a newcomer who can be jettisoned if things go wrong. He is perfectly placed to be the tool of UNUM, et al.
     
  2. Sing

    Sing Senior Member

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    New England
    Thank you, Mithriel, for your excellent, cool analysis, and Koan for your addition, Tee for your appreciation, and Gracenote for your emotional understanding (It was The Silver Chair by C. S. Lewis that you were remembering, a book I loved too from childhood, finding deeply true.)

    The view that we have is from the bottom up, seeing what is hidden underneath the clothes-for-show. It can be a bitter, powerless, hopeless position. But the truth is bigger than this game of deception. And I feel that we are beginning to be in more honest hands.

    As I see it, the scientific researchers are like a pack of hunting dogs turned loose. They are eager and excited in a race to catch the prey, XMRV. They want to know all about how it works and they want to kill it.

    A bunch of lazy lies to cover over the questions about cause and this illness won't be attractive at all to such a keen group of hunters--

    Cecelia
     
  3. Holmsey

    Holmsey Senior Member

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    Scotland, UK
    Leaving you to it.

    I thought about replying to 'Cold taste of tears' but what a pointless waste of time that would be. That the rest of you are quite happy to entertain this man is enough to tell me that it’s time to remove my membership, thankfully there’s nothing here I’m likely to miss.

    Since my first post I’ve been made to feel entirely unwelcome and ‘different’, thankfully now I realize I am, very different, to many of the sad, sad people I’ve encountered here.

    The rest of this posting is for anyone new to the site, and I hope that if you choose to remain it will prove of use, it’s issued as a warning as to the appalling depths of unhealthy self indulgence you’re about to meet, no wonder psychiatrists take such an unhealthy interest in our illness if this it’s real expression.

    This is a site that purports to be of service to those suffering from this difficult and misunderstood condition but I must conclude that in this service it has been entirely subverted, and in fact achieves the opposite. As to any ‘healing’, what? Overt or covert bullying doesn’t do that; this rather is a forum where the bitter ‘few’ attempt to force-feed their own brand of reality to ‘new recruits’.

    That I’m vilified seems to stem from my difficulty in accepting the argument that there is some form of global conspiracy against us, neglect perhaps, indifference definitely, but conspiracy, I’m still waiting on the evidence for that.

    It was my hope that by questioning some of the more outrageous claims I could induce an element of introspection that would lead others to stop and think about what they were saying. But rather it seems all I have done is to cause fear and alarm, bringing about a frantic knee jerk as I threaten peoples treasured identity within this disease, I wonder where they will be if XMRV is the answer and they soon find themselves cured.

    As to how I ended up here, having read some stuff on Martin Pall I was convinced enough by the NO/ONOO science to give one of the spawned supplement protocols a go, but as always I looked for detractors rather than just taking things at face value, I’d advise anyone to do that, there are always two sides to a theory. That’s how I happened across this site, if you’ve found it in the same way then please read on, this will concern you.

    First thread I was linked to was on Pall and, given some of the things that were being said, and my personal interest in his work, I asked a few civilized questions, again to the newbies, go check it out, make up your own mind if that claim is true.

    A few responses to direct insults later and we had people like ‘Cold’ suggesting I’d no right to be posting here, that’s not one for me to decide but in fairness I have had some good replies and found out some really worthwhile stuff from some pretty decent people. Leaving this site behind though, if it has any effect on my life whatsoever, I believe will be only positive; this is truly, truly an unhealthy place to hang out.

    Again don’t take my word for it, use your own judgment on whether you think, as has been suggested, that I’m anything from a psychopath to Simon Wessley in disguise, or indeed one of his cronies. Consider ‘Cold taste of tears’ repeated references to child abuse and rape while including my name, is he obsessing or is he trying to manipulate you into associating such outrages with me? In either case it’s hardly the product of a health mind.

    Alternately of course you may find yourself concluding, as some other users have, that I’ve simply not been convinced that ‘they’re all out to get us’ and in keeping with a high moral ethic and personal accountability believe that when someone makes a claim as fact, that they should be able to provide reasonable proofs or just cause for those claims, and if not I suggest it is them and not I who perform the disservice to the rest of us, your own morals will dictate which side of that divide you stand.

    I’m also about things having purpose and I find this site purposeless, it is to my mind an unhealthy, inaccurate even delusional moaning shop dominated by a single unsubstantiated viewpoint. If, as is being suggested here, there is a conspiracy against our illness then I’d like to work with other ‘reasonable’ sufferers to try and change that, but first, you have to make a robust case, something this thread has singularly failed to do.

    Find for yourself the reply I was sent to one posting which helpfully included a link to work being undertaken by the current Scottish Government, to that user my thanks, having gone through this in detail I must conclude that it’s a complete travesty to say ‘nothing is being done’.

    Something else you’re going to find you need is a fully documented ‘illness’ credential, your illness is unquestioned only as long as you hold to the script, after that, clearly, despite the opinion of three separate specialists and two GP’s, the masters of this reality will brand you a fake.

    Next up, get a good handle, something which shows you’re ‘into’ being sick, try ‘The depths of despair’ or perhaps ‘at my wits end’ or if you’ve a really dramatic flair, and take yourself really really seriously you could consider ‘Cold taste of tears’, that’s bound to win lots of sympathy. I only wish I had half the energy this man appears to have.

    Interestingly I asked a number of family and friends what they make of that name, that nobody gets it, that everyone thinks it’s sad should tell you volumes about what you’ve stumbled into.

    Initially I thought this site to be harmless, but it’s no such thing, read how it treats even those who ask for harmony, check out Mark’s post and the way he was treated for defending me. Now I see this site for what it really is, a refuge for people who have been so diminished at a personal level by their illness that it has become their entire identity, an identity that means more than cure or action. Woe betide anyone who tries to take that away from them, you’d have more luck getting a bottle from an alcoholic, so high are they on their shared victimhood.

    Stay if you wish but I’m well out of it and rejoice at the thought that I won’t have to bother with the bile that will no doubt follow.
     
  4. Koan

    Koan Be the change.

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    Holmesy,

    I'm sorry you are so angry. I'm sorry you seem to take everything so personally. I'm sorry you feel the need to lash out as you do. I know you will read this because it does not seem to be in your nature to let go. I'm sorry about that, too.

    But, it simply is not alright for you to spew the kind of invective you do. I am not sorry that you have chosen to stop.

    I hope you find some peace.

    Koan
     
  5. Lily

    Lily *Believe*

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    Holmsey

    It's quite beyond me why you have stayed as long as you have. And as for energy, you seem to have quite a lot of it - very negative energy.

    Truely is amazing to me that you have admitted that you have not done a lot of research and have only been sick for about 2 years - and yet you seem to be an authority on everything.

    I think it is fitting that you go now and find some place where you feel that you belong - somehow I think you are the type of person that will always feel as though you don't belong.....hmmmmm.

    My only hope is that if you really do have CFS that you don't continue to deteriorate and/or have to wait another 20 years to feel better. You will feel a bit differently if that happens. You need a few more years of this under your belt before you will know what it's really like.

    I feel very sorry for you. I really do.......it's going to be difficult as you get sicker. Very difficult.

    Best Regards,
    Linda
     
  6. Esther12

    Esther12 Senior Member

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    Was that a rant about too many people ranting on this forum?

    I find the postured rationality of Holmsey's posts make them especially trying. As if he's introducing a new concept by arguing that claims about CFS should be based upon the available evidence. I might disagree with CToT's posts, but they at least seem emotionally honest.

    The trouble is Holmsey, there's not much solid evidence to go on. It's conspiracy theories all the way down at the moment. You seem to have gone for the 'militant patients' one. It's not bad as a comforting story, but if you compare the way CFS patients behave to the way they've been treated, I don't think there's much evidence to support it. If it helps you feel superior though, you go for it.
     
  7. flybro

    flybro Senior Member

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    pluto
    I had much the same attitude as Holmelsy only a year ago.

    After experiencing what seemed to be a combination of ignorance and arrogance when I first interacted with GP, other than my GP. I started feeling targeted. I was shocked at the treatment I received.

    I was bewildered with the, no help, get lost and die attitude of ppl and GP's that had previously seemed OK.

    I felt traumitized. I dx'd in October last year. This only started 8 months ago for me when my doc had gone of on maternity leave.

    However prior to my diagnosis I had been fobbed off with, 'your bloods are fine', I had so many of the same blood test for many many years.

    Since then I have been on a huge learning curve. I also feel as though coming here and particuarly 'The Taste of Cold hard Tears' has helped me, more than any Dr ever has. He also eneabled me to get a T-Cell count from my Dr.

    With-out him I just like my surgery nurse, would never have heard of a T-Cell count. With-out him, I doubt I would have heard of XMRV even now.

    So to Taste of Cold hard Tears I say tyhank you very much.

    To Homesly, I once was where your are now, but the reality of my experience's with the medical authorities has changed where I stand now.
     
  8. dipic

    dipic Senior Member

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    Yes, clearly - we are the ones who are delusional. :rolleyes:

    What a troll; good riddance.
     
  9. joyscobby

    joyscobby Senior Member

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    homsley it was me that provided you with the Scottish Government Consultation document. You cannot claim that something is being done even here in Scotland. If you look around you where are the doctors who are providing a service, where are the specialist to be refered to. For example in my case I requested that my GP investigate me for vascular/ cardio problems an refer me to a specialist and he replied that he had no grounds to justify this. (despite research came from the same place as I would be refered to showing that this is a problem in ME) I asked to be refered to an endocronoligist and a gastroligist as I have not only IBS but divirculitist and sub clinical hypothyroidism. yet again he could not. I could though get a referal to a Clinacal Psychologist for CBT. This is not because he does not believe in this disease and aknowledges it is organic and that no one truely gets better from it it is because his hands are tied. His hand are tried by inherited practice from the NICE Guidlines. Drawing up Policy paper and guidlines are one thing but putting them into practice and providing services is another.

    One of the reasons I forwarded this on to you was it maybe forward looking but it aknowledges the past. It shows the muddying of the water of ME by linking it to an ill defined chronic fatigue syndromme. The question you should of been asking yourself is how did this muddying happen. this muddying happened by what is often been referd to as the phycriatic paradyme. Ask where did this come from who where clearly the key players. We in Scotland inherited it from the UK goverment (and a psudo Scottish Goverment who strings where pulled by thier labour party leader puppet masters in Westminster) and the inherited NICE guidlines.

    Who are the key players in the NICE guidlines. The key players in this has been the psychriatric school who have dismissed this llness continually as "a' in the heed" Wessely has been the most prominent and dominant and vocal of them but there have been others. You yourself said you have been ill for several years (3 I recall) in ME terms you are a baby. I myself have been 24 years and counting. I realised quiet early on the way things were going when doctors where continually being dismissive tried to label me neurotic. I ducked I hid and have done so until recently. I have not been directly hurt (as others have) but indirectly through neglect not only of my own personal medical care but the lack of furtherance of appropriate research into this illness.
    I always knew one day that as I would term it, it would pick on the wrong person and someone with the means and ability would do something. I had began to think recently as I face my immenent old age that it would not be in my lifetime.
    You have no idea not an inkling of the impact that this illness has had because to do so you would have to be able to empathize (not sympathize) and have compasiion for your fellow human beings. As to this forum. I will give a cheer at your exit. You have came on hear with an agenda (which I think you have hiddden) you have been abusive and offencive and was from the outset intent on causing trouble. I know this misquoted bit of Burns you quoted came from to a loose. The people I have encountered on hear have been wide and varied in thier knowledge and experience, some badly damaged some the kindest and often wisest I have encountered, we are all wide and varied but we are all "We're a' Jock Tamson's Bairns" . I have no agenda or fight with Wessely for myself but I could never like you be an appologist for the man, unlike yourself.
    His role, motive etc. are not for me to judge but for thoose who have been directly damaged by him. He may be a misogynistic egotistical psychopathic maniac meglomaniac motivated by ego and or greed I cannot say. however, what I can say is that he is dangerous because despite all the evidence to the contrary he will twist and turn the facts to dispute ME as the progressive organic Neuro immune disease that is is to fit his view regardless of the cloraltiral damage for eample the Shopia Miraz, Ian Proctors the countless others who are dead or still alive and suffering in the ME world.

    This is only the second time I have been so disgusted by the views of someone on a forum. I am by nature very tolerant but even tolerance has its limits. The last time was some one was defending the rights of the Brittish National Party to promote and incite hate crime through thier Raceist and Facist views. The other one is you. I will not wish you ill, I will not wish you to be in the postion of being so powerless that someone in power abuses you but I will tell you I am ashamed to call you a fellow Scot. so in the coloquel term and phenetically spelled Scots that you tried to hide insults in I will say it so in no uncertain terms tell you


    Why don't you haud yer wheest and go and bile yer heed.

    or in other word shutup and boil your head.

    Iwiil Pm this so I know you get it ignore it if you want but I have said it
     
  10. joyscobby

    joyscobby Senior Member

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    Find for yourself the reply I was sent to one posting which helpfully included a link to work being undertaken by the current Scottish Government, to that user my thanks, having gone through this in detail I must conclude that it’s a complete travesty to say ‘nothing is being done’. Quote fom homsley

    it was me that provided you with the Scottish Government Consultation document. You cannot claim that something is being done even here in Scotland. If you look around you where are the doctors who are providing a service, where are the specialist to be refered to. For example in my case I requested that my GP investigate me for vascular/ cardio problems an refer me to a specialist and he replied that he had no grounds to justify this. (despite research came from the same place as I would be refered to showing that this is a problem in ME) I asked to be refered to an endocronoligist and a gastroligist as I have not only IBS but divirculitist and sub clinical hypothyroidism. yet again he could not. I could though get a referal to a Clinacal Psychologist for CBT. This is not because he does not believe in this disease and aknowledges it is organic and that no one truely gets better from it it is because his hands are tied. His hand are tried by inherited practice from the NICE Guidlines. Drawing up Policy paper and guidlines are one thing but putting them into practice and providing services is another.

    One of the reasons I forwarded this on to you was it maybe forward looking but it aknowledges the past. It shows the muddying of the water of ME by linking it to an ill defined chronic fatigue syndromme. The question you should of been asking yourself is how did this muddying happen. this muddying happened by what is often been referd to as the phycriatic paradyme. Ask where did this come from who where clearly the key players. We in Scotland inherited it from the UK goverment (and a psudo Scottish Goverment who strings where pulled by thier labour party leader puppet masters in Westminster) and the inherited NICE guidlines.

    Who are the key players in the NICE guidlines. The key players in this has been the psychriatric school who have dismissed this llness continually as "a' in the heed" Wessely has been the most prominent and dominant and vocal of them but there have been others. You yourself said you have been ill for several years (3 I recall) in ME terms you are a baby. I myself have been 24 years and counting. I realised quiet early on the way things were going when doctors where continually being dismissive tried to label me neurotic. I ducked I hid and have done so until recently. I have not been directly hurt (as others have) but indirectly through neglect not only of my own personal medical care but the lack of furtherance of appropriate research into this illness.
    I always knew one day that as I would term it, it would pick on the wrong person and someone with the means and ability would do something. I had began to think recently as I face my immenent old age that it would not be in my lifetime.
    You have no idea not an inkling of the impact that this illness has had because to do so you would have to be able to empathize (not sympathize) and have compasiion for your fellow human beings. As to this forum. I will give a cheer at your exit. You have came on hear with an agenda (which I think you have hiddden) you have been abusive and offencive and was from the outset intent on causing trouble. I know this misquoted bit of Burns you quoted came from to a loose. The people I have encountered on hear have been wide and varied in thier knowledge and experience, some badly damaged some the kindest and often wisest I have encountered, we are all wide and varied but we are all "We're a' Jock Tamson's Bairns" . I have no agenda or fight with Wessely for myself but I could never like you be an appologist for the man, unlike yourself.
    His role, motive etc. are not for me to judge but for thoose who have been directly damaged by him. He may be a misogynistic egotistical psychopathic maniac meglomaniac motivated by ego and or greed I cannot say. however, what I can say is that he is dangerous because despite all the evidence to the contrary he will twist and turn the facts to dispute ME as the progressive organic Neuro immune disease that is is to fit his view regardless of the cloraltiral damage for eample the Shopia Miraz, Ian Proctors the countless others who are dead or still alive and suffering in the ME world.

    This is only the second time I have been so disgusted by the views of someone on a forum. I am by nature very tolerant but even tolerance has its limits. The last time was some one was defending the rights of the Brittish National Party to promote and incite hate crime through thier Raceist and Facist views. The other one is you. I will not wish you ill, I will not wish you to be in the postion of being so powerless that someone in power abuses you but I will tell you I am ashamed to call you a fellow Scot. so in the coloquel term and phenetically spelled Scots that you tried to hide insults in I will say it so in no uncertain terms tell you


    Why don't you haud yer wheest and go and bile yer heed.

    or in other word shutup and boil your head.

    Iwiil Pm this so I know you get it ignore it if you want but I have said it[/QUOTE]
     
  11. dannybex

    dannybex Senior Member

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    Seattle
    I'm coming late to this thread, so bear with me, but I think perhaps Mark has expressed what Holmsley was trying to, but without the "edge".

    ???
     
  12. joyscobby

    joyscobby Senior Member

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    sorry people (exept Homesly) for the rant and duplication of the post. It is not in my nature to tell people to shut up and get lost. I am not only by nature but also as a political principle and a philosophy of life a tolerant and careing person. However, I have my limits and the insults, abuse and offensive attitude I have encountered from this person, directed at individuals and all of us as a group pushed me beyond my limits. His reference and twisting of a document I sent him made it personal. He tried to use me to justify his position. That was never my intention believe me. Please do not take this as evidence of my general nature but a need to voice my anger and frustration at an illimformed, bigotted and abusive person.
     
  13. Mithriel

    Mithriel Senior Member

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    Scotland
    Hi Joy, your frustration came across :) I hope you are not suffering for it.

    Danny, for myself I do not hate anyone, if they would go away and stop interfering with my life I would happily forget them, so being asked to forgive them is totally irrelevant.

    The psychiatric school do not have power over me because I hate them but because they dominate policy and that directly impacts my life.

    Tomorrow they may decide I will no longer get my painkillers or other treatments, my benefits could be stopped, anything. With no logic or truth behind them they can do what they like with my life and the lives of others.

    I find this unacceptable. To redefine this lack of acceptance as a vendetta or lack of forgiveness or a wallow in victimhood is untrue and offensive.

    Mithriel
     
  14. Jody

    Jody Senior Member

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    I have some thoughts on this thread. Cort and I have talked about it and he thought I should post this here.

    First I'd like to thank those who tried to keep it on track, who tried to bring peace to it. You tried again and again and I am impressed. :)

    But I also have to say that, if I were a new poster here, I would probably have taken one look at this thread and run as far and as fast as my little cfs legs could carry me.

    And I can't imagine how I'd have felt if I'd been the target of all the hostility and venom I have seen on this thread.

    Unless there is something I am completely missing, Holmsey's transgression was ... disagreeing with some of you? He had a different opinion on a few things. It's one thing to take issue with someone's point of view. It is another entirely to attack him because he has a different view.

    If that is now enough reason for people to be attacked on these forums, ... well I for one wouldn't post here ever again.

    However as it happens, ... that is not a good enough reason for abuse to be hurled at anyone posting here. This thread took some real wrong turns and it is Cort's, and Chronically Fatigued's, and my task to try to provide safeguards and guidelines to prevent it ever happening again.

    So. If anyone sees someone being set upon, or if things look ... wrong somehow, contact me or Cort or Chronically Fatigued. Let us know. If it's still going on chances are we aren't aware of it. Don't worry about being meddlesome :) or if maybe you might be wrong. We just need some eyes and ears, we just need to know what's going on, everywhere, all the time. So we need a little help. :)

    We really can't have this kind of thing here. People who are attacking other posters will receive a chance to explain themselves because misunderstandings do happen. They will also receive a caution that this can't be repeated. They may be asked to apologize. If there is a repeat performance later, they will no longer be allowed to post here.

    A few people who were caustic and disrespectful will be receiving private messages over the next few days. We will talk about things as far as possible. But personal attacks and abuse are just are not going to be tolerated here.
     
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