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Wessely Says: Even if XMRV Causes ME, "There's Nothing We're Going to Do About it"

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by justinreilly, Mar 9, 2010.

  1. Min

    Min Senior Member

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    Mocking him is fun, but the reality is that here in the UK neurological myalgic encephalomyelitis has been deliberately muddled up with mild depression, and deliberately 'lost' in the muddle.

    We can't obtain effective treatment, only psychobabble that does more harm than not, and the doctors we see have been brainwashed to believe that we are somatising.

    I've been housebound and in intractable pain for 22 years whilst he and his colleagues spread this outrageous propaganda, and I can see no end to it and no beginning to effective biomedical treatment.

    The UK could very well end up the only country in the world where there is officially no XMRV and where people testing positive for it are ridiculed.
     
  2. oerganix

    oerganix Senior Member

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    As Dr Yes said, this is from the Minister of Propaganda. Notice how they are still repeating what they have to know is a lie: that the WPI cohort is poorly described and that it is from one outbreak from one area of the US. They know very well that isn't true, but everytime they get a chance they promote that idea. (It MAY be there, but it isn't HERE.)

    Distraction number two: they once again bring up the charge that the WPI lab might have been contaminated, a charge that has been laid to rest numerous times by better minds than theirs.

    Then SW tries to act like he really cares about the science involved and does his caring scientist imitation, all the while saying just be patient for a few more decades. We are looking for the cause by it's SOOOOOO complicated and it takes SOOOOO long to find the REAL answers. Sorry, XMRV wasn't IT, but we really want to find IT. Pure propaganda, smoke, mud in the water. His motto should be: If we can't razzle 'em with dissembling, we'll dazzle 'em with BS.

    Thank you Koan for transcribing this. It must have felt like trying to swim through a sewer.
     
  3. fingers

    fingers Senior Member

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    SW Endland
    Min, I'm really sorry if my post came across as trivialising and "fun". I can assure you that it is not. I want to discover the truth. If this turms out to be that I suffer from delusions of viral infection, I'm ready for that. I'm only a human being in a vast universe.

    I want some clear thinking. I want open minds. I want compassion and empathy. I WANT THE TRUTH WHATEVER IT MAY BE. Maybe SW is simply the counterbalance to the virologists, and vice versa. We're all part of the puzzle, and we all have the power to help solve it.

    Your vision of ME in the UK will not happen, trust me.

    Very best wishes
    F
     
  4. gracenote

    gracenote All shall be well . . .

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    It certainly hasn't been very enjoyable or very rewarding for those of us living with this disease.
     
  5. fingers

    fingers Senior Member

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    Esther

    If he's using fatigue in a wider sense, he needs to make that clear. Communication is everything in this condition, and miscommunication is a big part of the problem.

    After 30, 40, 50.....years we still don't have clear definitions, terms, even a globally accepted name for the condition.

    Definition of the problem is where we need to start, then we can start to understand it and then solve it.

    Best wishes (I don't mean that, that's what people who think they're important say to people who they think they're superior to) I mean.....

    Lots of love
    F
     
  6. Dr. Yes

    Dr. Yes Shame on You

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    Exactly, Oerganix. They are employing tactics which should be recognizable by anyone familiar with social engineering or socio-political framing, or just political propaganda in general. First, skew the 'frame of reference' through which the audience will view the debate to one that favors your agenda. This is achieved by deliberately re-framing the discussion in simplistic terms and constantly (and prominently) repeating it this way in the media, as Wessely and his collaborators have done. In so doing, make sure to ignore the issues critical to the opposing view, and also create distraction or 'run interference', to edge those issues out of the audience's consciousness. Do this by sponsoring attacks on one or two points about the opposing argument, even if they aren't clearly weaknesses at all, as if they were glaring weaknesses. Having created a mental state of confusion, replace those other issues with your own ideas, the more apparently reassuring the better, as the uncertain mind instinctively grasps at these more readily than new ideas that have been suddenly (deliberately) thrown into doubt. If the opposition uses academic language, respond with folksy or easily digestable metaphors.

    This when Wessely and his colleagues have done everything to discourage biomedical research into physical causation of ME/CFS. Yet another common strategy: if your opponent can point out that you are preventing progress and public good, appropriate their message and re-frame the situation as if they are in fact part of the problem and you are the one promoting progress.

    And, of course, at all times keep relentlessly repeating the 'big lie', or lots of little ones, even if at first it was discredited or laughed at, because over time the lie sticks in the public consciousness and the original clarity and context are lost. This requires not scholarly articles, but the lion's share of media coverage (easily bought, if you have the resources or political influence).

    An obvious contemporary example of this kind of manipulation occurred during the build-up to the Iraq War and has continued to varying extents since. Dick Cheney and others repeated the lie about ties between Iraq and Al Qaeda even after this had been publicly discredited, and the technique proved surprisingly effective despite the disastrous results... a very high percentage of Americans, often a majority, continued to believe that there was a direct link even leading into the last election.

    Every politician and/or professional spin doctor worth his salt has these strategies as part of his basic arsenal. Wessely et. al. are no exception.


    :D Yes, she must feel like giving her brain a shower!
     
  7. Robin

    Robin Guest

    He did make that clear:

    We know he favors a broad (Oxford) definition for research. We also know that CFS is not a spectrum like blood pressure: you either have PEM, flulike symptoms, cognitive dysfunction, POTS, or you do not. By widening the goal posts to include the chronically tired, run down, depressed, etc he can mix clinically different patients and influence his results. It's like sneaky peeking when you play pin the tail on the donkey -- you know what's going to happen!
     
  8. gracenote

    gracenote All shall be well . . .

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    Wessely purposely blurs the boundary and then criticizes the Science study for this very thing.

    In fact, the Science study was based on the Fukuda and Canadian criteria including specified markers.
     
  9. Esther12

    Esther12 Senior Member

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    I think Wessely often writes in a way that's primarily designed to create an impression. It helps him seem reasonable and persuasive to a general audience but adds to the irritation many patients feel for him. It also means that patients tend to criticise their own interpretations of his words, which will seem unfair to those who interpret him differently.

    From what I've read of his recent work, he really seems to avoid making any terribly clear assertions about CFS these days. Yet our interpretations of it will often be driven by his earlier, clearly unreasonable work, our interpretations will often seem especially unreasonable to those unfamiliar with it.

    (Sorry this post is a bit confused. I'm rushing to watch some TV!) Take care.
     
  10. Koan

    Koan Be the change.

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    Yes, exactly, and he does this in a very calculated fashion.

    Yeah, and that makes me think that he knows XMRV will pan out. His change in demeanour is one of the single most encouraging signs, for me, that XMRV has legs!

    :victory:
     
  11. Dr. Yes

    Dr. Yes Shame on You

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    Don't make me throw a biology textbook at you!
     
  12. Koan

    Koan Be the change.

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    :D :tear: :D :tear: :D :tear: :D
    :hug:
     
  13. justinreilly

    justinreilly Stop the IoM & P2P! Adopt CCC!

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    I agree on all this. His paper on the XMRV study did have some big advances in nomenclature and definiton for him: they called "CFS" a "disease", used Fukuda Criteria and in their selection process ruled out patients with somatization.
     
  14. bel canto

    bel canto Senior Member

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    I'm so glad that doctors and researchers didn't apply "Wessley-think" to diseases like MS - or at least that we are now past that stage. Science may not have all the answers yet, but research for this and similar diseases have at least yielded interventions into the disease process.

    It's incredible to hear a person say that treating the symptoms of a disorder is sufficient - no understanding of the cause is needed. That clearly supports what some of you believe - that he either believes there is no physiological basis to ME/CFS, which means he is incompetent, or he is a very bad person, in cahoots with others for monetary or other reasons.

    As most politicians are not only non-scientists, but likely not very interested in science, a psychiatrist can be very persuasive. And he is quite slippery in his use of language, as you point out.

    However, even without clear assertions about CFS, as Esther noted above, 1 + 1 still equals 2, ie - his message is still quite clear - you don't need to look for an ongoing biological cause of this disease because it does not exist.
     
  15. gracenote

    gracenote All shall be well . . .

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    I think that's exactly right.

    Welcome, bel canto. From what I can tell, your screen name is Italian for "fine song." Nice to have another musical reference on the forums.

    gracenote
     
  16. parvofighter

    parvofighter Senior Member

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    Thank you koan!!

    Koan, I want you to know how much I appreciate your swimming through the proverbial sewer. This was an extremely important transcription, because it captures Wesseley et al in a potentially unscripted, and vulnerable mode: the wonderful podcast.

    Great ammunition for investigative reporters and class-action lawsuits on ME/CFS!
    I'm just back from my monthly hospital IV trip, so am just not up (YET!) to commenting further right now. But bottom line, we NEED to keep transcribing/copying/saving this kind of dreck, if only to save it for posterity, and pass it on piecemeal to investigative reporters and/or lawyers. This podcast/transcription is going to come back to bite the CBT/GET lobby, and the BMJ.

    I felt dirty reading the transcription, and can only imagine how you felt, Koan, listening to this over and over to transcribe it. You can take your mucking gloves off now!

    Mucking gloves..jpg

    Thank you Gerwyn, gracenote, Maarten, flybro, natasa, Dr Yes, Kim, justinr, monkeybusiness, fds66, Min, oerganix, bel canto... for your insightful comments. CBT/GET-o-philes are far more than a disingenuous irritation... they have devastated lives by their paint-by-numbers approach to this neuro-immune disease, and their stranglehold on ME/CFS health policy.

    The cherry in the sundae is Wesseley's statement:
    [FONT=&quot]You know, youve been hit by a car; we dont need to know the number plate of the car that hit you in order to rehabilitate someone whos been in a road traffic accident. Nor, when were dealing with CFS do we need to know precisely what virus it was that you had and when. [/FONT]
    If ever there were words that screamed of medical ignorance, injustice - much less malpractice - this is it. Wesseley's words here are beyond those of an intellectual simpleton - he and the CBT/GET movement are mortally dangerous to patients with Canadian-criteria ME/CFS. Just look at the differential presentation of viral heart disease, which is known to accompany ME/CFS ... it makes a MASSIVE difference which virus you have - both to your outcomes, and to your treatment... that is if you're one of the lucky ones like me who is having viral heart disease treated. (just do a search on "viral myocarditis" on PubMed). People are dying from this. Just look at the outcomes of Montoya's Stanford work on Valganciclovir. It makes a huge difference, not only which virus you have, but also what the titre is.

    Hang in there... quotes like those from this podcast are going to ROCK the global media when they finally come to their senses and realize that another Acquired Immunodeficiency Syndrome is being treated with preening lollipops, condescending pats on the head and veiled admonishments to have a better attitude.
    And that the BMJ is lapping it up - and broadcasting this dreck.

    Perhaps the last words in Part 2 of the transcription are the most chilling, because it beautifully captures the effect of decades of denying ME/CFS patients biological diagnostics and treatment...

    "we want people to engage in this area and help move it forward in a steady fashion."

    It is no surprise that Wesseley ends with a note to preserve the status quo. Steady now... steady... Perish the thought that a stunning breakthrough might occur that would expose the one-size-fits all CBT/GET approach to ME/CFS as methodologically and scientifically flimsy, much less morally repugnant and dangerous.

    And Monkeybusiness, I had no idea the BMJ was state-funded. That goes a long way to illuminating the BMJ's participation in this farce.

    Thanks again Koan, you're a trooper!:Retro smile:
    [FONT=&quot]

    [/FONT]
     
  17. Koan

    Koan Be the change.

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    I must say, it has been really gratifying to watch people actually use the transcript! It made me feel so good and even, kinda, useful :victory:

    Thank you!

    :hug:

    But yeah, you really don't want that guy in your head too much! I feel like I developed a bad case of slime on the brain. Should be all better by tomorrow.
     
  18. bel canto

    bel canto Senior Member

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    Wow, Parvo - that was an amazing post!!!

    And, Koan, thanks. I hope you both are ok.
     
  19. ukxmrv

    ukxmrv Senior Member

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    As an example to people new to UK ME politics here is how one earlier NHS doctor who claimed to have the answer to the disease was tackled

    (and yes, we did try to get that reporter interested in the ME side)

    http://duncan.gn.apc.org/nixon1.htm

    Exerpt
    ====
    Doctor loses C4 libel case

    Channel 4 has won a 2m libel battle with a Harley Street doctor who the channel claimed rigged tests and misdiagnosed a terminally ill Aids patient. Dr Peter Nixon halted his case against the channel's 1994 programmc, Preying On Hope, after five weeks at the Royal Courts of Justice in London. Dr Nixon has gained a high profile for his theory that a list of diseases including Aids, Gulf War Syndrome, ME and premenstrual tension are attributable to hyperventilation.

    However Channel 4 found that Dr Nixon rigged his patients' breathing tests by asking them to "breathe as if they were angry". He told lan Hughes, an Aids patient who died last summer, that his fatigue was caused by over breathing. Dr Nixon who had a turnover of more than 100,000 a year, recommends a course of Valium or diazepam and "two weeks of sleeping" as a cure for hyperventilation. Paul McCann

    Independent (UK), 16 May 1997, page 2
     
  20. Gerwyn

    Gerwyn Guest

    I did not know it was a state propaganda machine either Do we have anyone capable of finding out who the members of the board are-both executive and non executive directors.It might explain a lot!
     

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