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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Information Commissioner's Office denies request for PACE Trial data. Frustrating ruling (March 9)

Discussion in 'General ME/CFS News' started by Dolphin, Mar 19, 2016.

  1. Dolphin

    Dolphin Senior Member

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    https://ico.org.uk/media/action-weve-taken/decision-notices/2016/1623721/fs50609018.pdf
     
    taniaaust1, Valentijn, Comet and 4 others like this.
  2. Dolphin

    Dolphin Senior Member

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    I noticed an error:

    This could make it look like it was a repeat request. However the earlier requests related to those classed as recovered


    https://www.whatdotheyknow.com/request/6min_walking_test_results_for_re


    https://www.whatdotheyknow.com/request/6min_walking_test_data_recovered
     
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  3. Countrygirl

    Countrygirl Senior Member

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    Don't miss these quotes!:

    31. It has explained that one particular forum (the Phoenix Rising Forum) actively promotes the use of FOIA stating: “Let’s have some more FOI requests please…I always thought FOI requests were our best weapon and we need to play that card more strongly in all areas.”


    38. The Commissioner has considered the evidence submitted by QMUL and is satisfied that the requesters do appear to be linked by their activity on Twitter, The Phoenix Rising Forum and their posts on various websites including the Whatdotheyknow website.
     
    Last edited: Mar 19, 2016
  4. Dolphin

    Dolphin Senior Member

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    If Alem Matthees wins his tribunal case in April, the same data could be released.

    It is quite odd that the ICO sided with him but not Anna when he was asking for more data than in this case.
     
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  5. Countrygirl

    Countrygirl Senior Member

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    54. In such circumstances the Commissioner considers the ongoing opposition to the trial and repeated requests for data would undoubtedly cause disproportionate irritation and distress to Professor White and his colleagues.

    So what really matters to the Commissioner is the irritation experienced by Prof Peter White and not the severe and permanent bodily harm inflicted on a very large group of vulnerable and very sick patients by the inappropriate and dangerous graded exercise programmes promoted by this fraudulent research. I think the Commissioner needs to review his priorities.
     
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  6. Comet

    Comet I'm Not Imaginary

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    :jaw-drop:
     
    Countrygirl likes this.
  7. jimells

    jimells Senior Member

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    The Commissioner seems to understand all too well that his priority is to not bite the hand that feeds, like any loyal functionary.
     
  8. halcyon

    halcyon Senior Member

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    LOL. Looks like they're a fan of Mark.

    @wdb I imagine a grep through the access.log for 161.23.*.* might be pretty amusing.
     
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  9. Battery Muncher

    Battery Muncher Senior Member

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    So is that it? The FOI request has been rejected?

    Is there any possiblity of appeal?
     
    ballard likes this.
  10. Sean

    Sean Senior Member

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    They say that like it's a bad thing.
     
    Last edited: Mar 20, 2016
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  11. Esther12

    Esther12 Senior Member

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    I've not had time to read this yet, but if that's all that is needed to consider requesters as being linked (an interest in the topic, and writing about it on forums where it is commonly discussed), then surely lots of the requesters for almost any information of minority interest are likely to be 'linked'. Academics working in an area will tend to be 'linked' in this way even if they really dislike and disagree with one another.

    Actually I just checked: Anna as only made 21 posts here! By heck. The bad reputation QMUL are trying to give us seems to rub off on those innocents foolish enough to sign up pretty darn quick. I wonder if any other health condition has patients' biggest internet forum be used to undermine patient members in this way?

    I shouldn't comment until I've read the decision notice.

    Best wishes to Anna though. I did closely read two other 'vexatious' decisions, and both displayed really clear gaps in their understanding, as well as being quite unpleasant in the way that they dealt with patients trying to help others understand more about the evidence for their treatment decisions.
     
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  12. A.B.

    A.B. Senior Member

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    The ICO fails to distinguish between criticism of and opposition to bad science and a campaign of harassment.
     
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  13. taniaaust1

    taniaaust1 Senior Member

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    Yeah well we are all meant to be bad aint we... all those ME trouble makers!! who spend every once of energy they have trouble to cause problems. Its just another example of the crap directed towards us. Obviously they think we have no right at all to question any study on the illness we have.

    If they released the info people are wanting to know, they wouldnt be even then getting these requests of patients and others who are wanting to know..and Professor White wouldnt have to be feeling harrassed (unless he's hiding stuff with that data to cause an outcry about it). PACE trial has deeply affected our lives and it seems they arent the slightest aware of that and just want to protect the ones who did the study by not allowing the study to be further questioned.

    Im sure the info would go all out there fast as after all, we are in the age of the internet... if he's feeling harrassed with requests, all the more reason to release the data and help the poor guy.
     
    Last edited: Mar 20, 2016
  14. lansbergen

    lansbergen Senior Member

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    :rofl::thumbsup::D:lol:
     

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