Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
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David Tuller needs our help

Discussion in 'General ME/CFS News' started by Countrygirl, May 27, 2017.

  1. Esther12

    Esther12 Senior Member

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    Yes... although I'm not sure how well the gentle British sensibilities of the ICO would suit Tuller's rather forthright style. I'm sure a UK journalist with experience with the FOIA and academia would be able to get a lot of useful information out in ways that patients just don't think of, or no had to do a good job of getting. Anyone know of such a reporter?
     
    Esperanza likes this.
  2. Valentijn

    Valentijn Senior Member

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    Do UK journalists still exist?
     
  3. Snowdrop

    Snowdrop Rebel without a biscuit

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  4. slysaint

    slysaint Senior Member

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  5. RogerBlack

    RogerBlack Senior Member

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    Style is largely bypased by 'Following the decision of the tribunal of X that data where the risk of reidentification does not realistically exist is not protected by medical confidentiality', ...

    I've noted in the past that the patient consent form uses the form of words 'researchers may contact trialists' - not 'the research team', or 'kings college researchers', raising the issue that a properly funded (probably UK) study from a university, following ethics approval could in principle contact the patient group for further work.
    Even very simple additional questionairs could answer interesting things.

    SF36 now, for example as well as fairly objective measures like work status.

    You don't initially approach the ICO.
    You approach the researchers, get a no, appeal to the college, get a no, appeal to the ICO.
     
  6. Large Donner

    Large Donner Senior Member

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    Sure they do, they are the guys on the government payroll.
     
  7. RogerBlack

    RogerBlack Senior Member

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    Journalism in all countries, including the UK has undergone a massive hollowing out.
    All traditional media has tried to slash costs to the bone, which means that investigational journalism is increasingly under challenge - spending a few months salary on a 'maybe' story simply isn't an option.
     
    JaimeS, Barry53 and Valentijn like this.
  8. Countrygirl

    Countrygirl Senior Member

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    A corker of a slide from David Tuller this evening in N. Ireland:

    Telling it as it is:


    [​IMG]
     
  9. Snowdrop

    Snowdrop Rebel without a biscuit

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    That definitely made my day.

    He is of course correct -- if he were wrong then they would robustly defend themselves and their trial from such allegations.

    Goading them to try is brilliant. I almost wish they would (but am hoping PACE will be roundly trounced long before a trial could manage it).

    Kudos DT.:heart: :star::star::star::star::star:
     
    Last edited: May 30, 2017
    Cornishbird, Solstice, Sean and 3 others like this.
  10. BurnA

    BurnA Senior Member

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    Hi,

    David was in Dublin yesterday to meet @Tom Kindlon before heading off to Belfast.

    David stopped by my place and we shot a short video - see here :

    I also did a longer interview with him but haven't had time to edit it yet, will take me a few weeks to get to it.
    David really needs our help on this, because it sounds like his part time work in Berkeley is drying up.

    Anyway, give it a watch and anything you can do to help spread the word around, I know David would really appreciate it.
     
    Aroa, Jo Best, pernille and 30 others like this.
  11. Jennifer J

    Jennifer J Senior Member

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    Can checks be sent directly to David so more money can go to him without fees and other being taken out? Or may this cause problems?
     
    RL_sparky and Countrygirl like this.
  12. BurnA

    BurnA Senior Member

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    I can't answer that but I have the impression he really needs to reach his target of $60k.

    The convenience of donating online probably makes up for some of the commission, so rather than people delaying I'd say he'd prefer if they just went ahead and donated online.
    When you donate online you have the option to pay the fees yourself too.
     
  13. Esther12

    Esther12 Senior Member

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    I've mentioned it to a few people who are interested in PACE... I have too small a social circle though!
     
    Jennifer J likes this.
  14. Tom Kindlon

    Tom Kindlon Senior Member

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    Well done for doing it.

    I've highlighted it in a few places.
    Let me know whether you want your name mentioned at all.
     
    BurnA, slysaint, meadowlark and 7 others like this.
  15. trishrhymes

    trishrhymes Senior Member

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    Donated. 25% raised so far. They need the money by the end of June, I think.
     
    RL_sparky, Jennifer J, Kati and 10 others like this.
  16. BurnA

    BurnA Senior Member

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    Did anyone ask AfME if they would help promote David's crowdrise?

    :)
     
    meadowlark, Sean, Esther12 and 6 others like this.
  17. Tom Kindlon

    Tom Kindlon Senior Member

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    I donated. Here's what I said for what it is worth:

    comment when donating to David Tuller.JPG

    I am a little concerned that the rate of donations has fallen dramatically in recent days.
     
    mango, meadowlark, Kati and 9 others like this.
  18. BurnA

    BurnA Senior Member

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    Me too.

    David mentioned that ME Action were going to do a piece on it or at least help spread the word. Does anyone know if that has happened yet?

    It would be nice to think other charities would help promote it too, afterall David's work benefits everyone.
     
  19. ScottTriGuy

    ScottTriGuy Stop the harm. Start the research and treatment.

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    It may be helpful if a very short video from a patient pleaded for donations...telling the narrative as concisely as possible to keep the video under Twitter max of 2:20 (iirc).

    "please support a real journalist expose fake researchers so patients stop being harmed by physicians"

    This drive for donations needs a campaign plan to help achieve its goal...and a small team to drive it forward.
     
  20. Mesurfer

    Mesurfer

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    PA/NJ

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