Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Rat fleeing sinking ship (Peter White retiring from Barts/HMS PACE)

Discussion in 'General ME/CFS News' started by Yogi, Jun 3, 2017.

  1. Yogi

    Yogi Senior Member

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    Rat seen fleeing HMS PACE

    [​IMG]

    I thought this should have it's own thread.





    Let us not allow this criminal slip away quietly after the harms he has caused to pwME and the needless deaths.

     
    Last edited: Jun 3, 2017
  2. Yogi

    Yogi Senior Member

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    Not getting a friendly send off on social media. I wonder why that could be





     
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  3. Yogi

    Yogi Senior Member

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    Last edited: Jun 3, 2017
  4. Yogi

    Yogi Senior Member

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    Peter White's wife Caroline White who is a co-director in his firm.



     
  5. Esther12

    Esther12 Senior Member

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    The thing most likely to let the PACE researchers get away with their dodgy research is patients making over-blown claims that allow them [the PACE researchers] to play the victim card and present patient critics as unreasonable. This is what they're trying to do amongst their allies in UK medicine, and we already face a lot of bigotry here, so need to be careful not to do things which will make it worse. I'm confident that I can show White is a quack, but I don't think he can be shown to be a criminal.
     
    Last edited: Jun 3, 2017
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  6. Tally

    Tally Senior Member

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    They have gotten away with dodgy research because they are powerful people who are backed by powerful institutions looking to save money at the expense of some of the most vulnerable and powerless people in the world.

    I am all for remaining calm and rational and I agree it's the most effective we can be, but let's not blame the victims for the actions of their abusers. Staying silent never brough about any change.
     
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  7. Esther12

    Esther12 Senior Member

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    Of course it's vital that we speak out about the real problems with their work, and I'm not blaming anyone other than White for the harm White has done, but lets not pretend that they have been very effective at undermining legitimate patient concerns in the eyes of many influential figures by tying them to a tiny minority of patients who make claims that go too far.
     
  8. adreno

    adreno PR activist

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    The man is old and retiring. Has nothing to do with PACE or abandoning sinking ships. Dream on in fantasyland.
     
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  9. Esther12

    Esther12 Senior Member

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    I think it is to do with PACE. Sharpe was talking about one of his colleagues taking early retirement due to the PACE back-lash. White is having to spend a lot of his time defending his own junk-science... I suspect that makes retirement look more appealing. Also, not sure how retired he will be: I expect he will continue to try to defend his reputation, which is so tied to PACE. Maybe he felt he needed more time to devote to this?
     
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  10. Tally

    Tally Senior Member

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    They brand anyone, even serious scientists who legitimiately challenge the faulty science as vaxatious. They accuse patients of harrasment and then fail to produce evidence when asked in court. They obviously don't require actual instances of anyone going too far to make those claims.

    You think there aren't cancer pateints who go too far? You think there aren't MS patients who go too far? You think there aren't AIDS patients who go too far?

    And yet no one is using actions of those minorities to undermine research into those illnesses.

    Yes, let's not pretend.
     
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  11. Ysabelle-S

    Ysabelle-S Highly Vexatious

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    PACE is the perfect epitaph to his career.

    I really do laugh at the way they are all trying to prop up each other's reputations. If one goes down, they all go down.
     
  12. Esther12

    Esther12 Senior Member

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    None of that alters the fact that patients can make things easier for the PACE researchers by going too far. I don't want to make things easier for the PACE researchers. People do look in on PR, and a researcher seeing a couple of unreasonable comments can help bias them against us. That's not fair, and I agree that there are similar comments on forums for other illnesses, but it is what it is.
     
    Last edited: Jun 4, 2017
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  13. BurnA

    BurnA Senior Member

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    I don't understand this, they will say what they want regardless.
    Silence is their friend, we need to make more and more noise.

    What do you mean by researcher forming a bias against us? That's a myth propagated by the very people who want you to stay quiet. If a researcher is going to read one or two posts on here and then conclude that they don't like ME patients, please let them move along.
     
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  14. Tally

    Tally Senior Member

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    Any researcher who comes to patient forum for random online people (bear in mind anyone can post here and pretend to be a patient) to tell him or her what to think, is a researcher not worthy of that title. A researcher who wants to know about PACE trial should read PACE trial, peer-reviewed commentaries and articles by professional journalists (like David Tuller).

    Researcher who do openly frequent this forum have formed their own opinions the proper way, and then came here to communicate with patients.

    I am absolutely against harrasment, and against irrationality, and against making any judgements without proof, but this fear of appearing unreasonable has stopped us from speaking up for way too long, while it didn't stop them from branding us as unreasonable.
     
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  15. Esther12

    Esther12 Senior Member

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    Who is arguing for silence? Why do some people seem to mistake concern for statements that go too far and can be used to make patients look unreasonable as a call for surrender. Even more annoying is the way some can mistake asserting unreasonable condemnations of people like White is some sort of brave stand against them, instead of just playing into their hands.

    What makes you say that? It hasn't stopped me from speaking up. It hasn't stopped many others from speaking up, and making real progress in bringing attention to the problems with research like PACE. It has made it clear that it's important to speak up only in reasonable ways, but I think it's best to try to be accurate and reasonable in the claims we make anyway, so do not find that to be a restriction on how I would want to behave.

    As I'm sure everyone here is aware, a great many of the people in positions of authority in British medical are not reasonable, are not commited to examining the evidence fairly, and are happy to use any excuse they can to avoid recognising that patients were right to be concerned about how people like Wessely/White/etc have treated CFS. Sadly, their opinions still matter. We can make things worse for ourselves, and worse for those trying to make progress with PACE, or we can try hard to restrict the claims we make to those that are accurate and reasonable. I think it would be best to not give them excuses to ignore patient's concerns about the work of influential and well connected researchers, as we already face enough prejudice and biases in those institutions that are standing in the way of us making progress.
     
    Last edited: Jun 3, 2017
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  16. Sean

    Sean Senior Member

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    Silent we are not.
     
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  17. Snowdrop

    Snowdrop Rebel without a biscuit

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    No, none of us here have any intention on staying silent about the abuses of the BPS. That's a pretty global statement and I don't think it means very much. Everyone here is looking for change and I don't think they believe that will be achieved through silence.

    There is space for debate as to when it is most advantageous/effective to speak and how the content is best presented.

    They chose this date to do this congratulatory feast. It's possible as a way to goad/gall us as we discuss cutting edge research. For me, with this kind of thing I say don't rise to the bait. Ignore them as if they're irrelevant here. Choose to engage where it matters.
     
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  18. user9876

    user9876 Senior Member

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    I think @Esther12 point is not to be silent but to be careful. There is so much bad science that they have been involved in along with stigmatizing patients to avoid scrutiny that we don't need to make additional accusations.
     
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  19. BurnA

    BurnA Senior Member

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    Yes that is the general point.

    It comes down to what one considers unreasonable, and what one is fearful about. I am not afraid of anything the PACE authors want to say about patients.
    And neither BTW do i think it is brave what anyone says, I think it is our duty to speak out.

    And I would argue that Peter White has caused harm to patients, can I prove he is a criminal no, but I do think he falls into that category of human being.

    Who knows, in the future White et al may be prosecuted for unnecessary harm to patients. They deserve to be.
     
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  20. Starlight

    Starlight Senior Member

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    Our best hope is to help those who she putting themselves out to help us.
     
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