Choline on the Brain? A Guide to Choline in Chronic Fatigue Syndrome
http://phoenixrising.me/research-2/the-brain-in-chronic-fatigue-syndrome-mecfs/choline-on-the-brain-a-guide-to-choline-in-chronic-fatigue-syndrome-by-cort-johnson-aug-2005
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Coyne - What it takes for Queen Mary to declare a request for scientific data “vexatious”

Discussion in 'General ME/CFS News' started by worldbackwards, Dec 2, 2015.

  1. worldbackwards

    worldbackwards A unique snowflake

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    And just a whiff of "dangerous mental health patient" cliché whilst we're at it. No irony there then.
     
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  2. worldbackwards

    worldbackwards A unique snowflake

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    I shall look forward to this:

    The thing about the PACE authors getting nasty is that they have so many grossly unpleasant skeletons in their closets. It'll be nice to see some of them coming out into the light.
     
    Last edited: Dec 18, 2015
    Mary, leela, snowathlete and 12 others like this.
  3. Mark

    Mark Former CEO

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    On this, it might be worth checking the dates carefully. If one or more of the FOI submissions from QMUL or KCL claimed that the cost of providing (subsets of) the anonymised datasets would be prohibitive, at a time when the anonymised datasets already existed and had been provided to the Cochrane report, it seems to me that would be false witness...anyone know if that might be contempt of court?
     
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  4. lnester7

    lnester7 Seven

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    I need a cartoonist to have a person thinking really hard with empty hands and like a thought of the data. And PACE team saying you really not thinking hard enoguh or you would have the data in your hands :rofl::p
     
    ballard likes this.
  5. Daisymay

    Daisymay Senior Member

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    Thanks for reminding me of St Bart's awful comments to the draft NICE guidelines, I'd forgotten just how bad they were!

    I spotted this bit which is very apposite to the PACE long term CBT/GET paper results:

    (vii) On Recovery times:

    Draft text:
    6.3.6.16 When planning a programme of GET the healthcare
    professional should:
    • discuss with the patient ultimate goals with the patient that are
    important and relevant to them. This may be, for example a 2 x 15
    minutes daily brisk walk to the shop, a return to previous active
    hobby such as cycling or gardening, or, if more severely affected,
    sitting up in bed to eat a meal.
    • recognise that it may take weeks, months, or even years to achieve
    goals, and it is essential that the therapy
    structure takes this pace of progress into account.

    SH St Bartholomew's Hospital Chronic Fatigue Services
    75 FULL 188 6.3.6.16

    These goals should include recovery,
    not just exercise and activity goals.
    If it takes "years" to achieve goals, then
    either the goals are wrong or the
    therapy is wrong. What other treatment
    in medicine would take years to work?
    We suggest "or even years" is deleted.
    If a therapy is not helping within a few
    months, either the therapy or the
    diagnosis or both should be reviewed
    and changes considered. We suggest
    that this advice is pertinent to all
    treatment approaches, not just for GET.
     
    leela, Countrygirl, Keela Too and 7 others like this.
  6. Valentijn

    Valentijn Senior Member

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    I think it's worse than that. The purpose of the fictional anti-psychiatry narrative is to label us as loathsome and deranged bigots, not just mere anti-science extremists.

    This is why even people who favor the release of PACE trial and similar data are including comments repeating those aspersions as a way to distance themselves from the supposed bigots. If they omitted that, they might be seen as supporters of our (disproven) anti-psych bigotry.

    It's a harmful narrative, and it needs to be forcibly retired.
     
    mango, leela, ballard and 12 others like this.
  7. worldbackwards

    worldbackwards A unique snowflake

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    Well, I got this far...
    :)

    It's like what @octoberpoppy said in her blogpost the other day - we aren't even trusted to have an opinion. Unless it's the "right" one.
     
  8. Valentijn

    Valentijn Senior Member

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    The problem is much deeper and more extreme - they aren't just saying that we can't be trusted. They're saying we're basically a hate group who are prejudiced against people with mental illnesses.

    It's on par with calling us racists or misogynists. It implies that we shouldn't just be pitied for distrusting science, we should also be reviled for our hatred and intolerance of a large class of disabled people.

    In addition to being an excuse to completely dismiss everything every ME patients says (we'd all have a psych diagnosis if we accepted our supposed psych problems, after all), it opens the door to the sort of abuse which is obviously and shockingly inappropriate for any other patient group.

    I think this is why we see a group of socially liberal and otherwise tolerant and enlightened academics being such turds toward us in such a public manner. They don't see their behavior as being similar to that of racists or anti-semitics shouting down those who want to change the discriminatory status quo. Rather they've been taught to see us as the bigots, and they're allowed to deride us to their hearts' content as a result.
     
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  9. Sam Carter

    Sam Carter Guest

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    Hi Mark,

    Concealing information is a criminal offence under Section 77 of the Freedom of Information Act.

    I've complained to the ICO in the past about a public body, alleging that a person had deliberately withheld information from me, and because I was able to make a persuasive case that this had occurred the ICO took my complaint seriously and expedited the appeals process.

    I was told by the ICO that the evidential bar for proving such a breach is set very high, and that at the time I complained there had been no successful prosecutions under Section 77.

    However, if there is evidence that QMUL wrongly denied having information that was actually in its possession, it's possible that someone has breached Section 77. (As I understand the law, it is the person rather than the institution who would be held to account.)

    I sense that given the current climate of QMUL presenting itself as the victim of a dangerous, anti-science rabble, it would be politically risky to claim that someone had broken the law in denying the release of information.

    It's a weapon of last resort in my view, but worth considering if compelling evidence exists that an offence has been committed, and all other attempts to obtain the data have been exhausted.
     
    Last edited: Dec 19, 2015
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  10. jimells

    jimells Senior Member

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    Even if we can't use this approach now, evidence of illegally withholding data could still be useful in a future class-action lawsuit. With so many people severely harm through the Wessely School's actions, legal action by somebody is inevitable, just like with the tobacco companies.
     
    duncan likes this.
  11. snowathlete

    snowathlete

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    Hope Coyne or someone highlights this stuff in a blog somewhere. Needs more attention.
     
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  12. snowathlete

    snowathlete

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    I don't think it's risky to formally ask the question though. There seems to be a discrepancy between the two accounts. It may be it's not the case, or that it is. Questions need answering.
     
  13. Large Donner

    Large Donner Senior Member

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    I think we should push how illogical and how improbable that any such claimed bigoted views would not be spread out equally amongst the entire patient population of every single illness there is. Of course there is a provable non bias anyway.

    Why would it be the case? Aren't racists, homophobes or sexists spread out amongst the general ill and healthy population in no particular bias?

    We need to use their own bigoted presidencies back to them.

    We have to keep pointing out their own historic biases and how many times they have used the witch hunt tactic of "In denial makes it true", despite the fact they themselves are always wrong.

    They need to be shown for what they are, dangerous egocentrics dinosaurs whose own hate filled rhetoric is actually proof of their own stigmatizing of "mental"
    illness.
     
    Webdog likes this.
  14. Valentijn

    Valentijn Senior Member

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    They would argue that we're just a subset of people with a psychogenic disorder, or with broader psych disorders. That we're the nasty and extra crazy ones who rejected those diagnostic labels due to our supposed anti-psychiatry bigotry, and that we fought for the ME/CFS label instead of settling for MUS or depression.

    I think the first thing we have to do is ask them why an exception to open data should be made for ME/CFS patients. And when they state or imply that bigotry is involved, inform that it isn't true, there is no proof of such bigotry, and there is even research refuting that we are biased against psychiatry.

    It's a narrative created by people who wish to discredit ME patients who disagree with their findings, or question their blatantly shoddy methodology. But I'm not sure there's a concise way to explain that to people who have accepted the narrative, without sounding rather nuts.
     
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  15. worldbackwards

    worldbackwards A unique snowflake

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    Where there was no conflict of interest or anything...
    http://onlinelibrary.wiley.com/doi/10.1002/14651858.CD011040/full

    Via Dr. Speedy - http://linkis.com/blogspot.de/E8Qun
     
    Bob, Chrisb, Valentijn and 2 others like this.
  16. Scarecrow

    Scarecrow Revolting Peasant

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    Have they redefined the meaning of the word independent now, too?
     
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  17. Kati

    Kati Patient in training

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    Their 'cartel' is pretty extensive. Independant just means outside of King's College and QMUL.
     
  18. Gijs

    Gijs Senior Member

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    If Cochrane used the data from the controversial Pace Trial than the meta analysis from Crochrane isn't reliable either. It is not uncommon that the outcomes of meta analysis are too positive. That is also how they work in the farmaceutica industry to promote their medicine. It is a marketing instrument. The authors of the Pace trial know this. It looks really frauduleus.
     
    Last edited: Dec 19, 2015
  19. Esther12

    Esther12 Senior Member

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    Some of those other names are less 'independent' than I'd like too.
     
  20. worldbackwards

    worldbackwards A unique snowflake

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    I wonder if there was some top secret meeting where they handed the data over to themselves.
     
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