The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

Updated appeal from David Tuller

Discussion in 'General ME/CFS News' started by medfeb, Jun 20, 2017.

  1. medfeb

    medfeb Senior Member

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    Reposting as a new thread to higlight. Hope that's okay

    David Tuller has posted an updated appeal stating that he has met his original goal of $60K - thanks to this amazing community.

    David is going to let the campaign run till the end of June as originally planned and use any additional funds to cover travel to other countries and if possible, to extend his Berkeley appointment beyond 6 months. Besides for PACE, he hopes to also smack down the recent Cochrane review over the next year.

    If you have not had a chance to donate and are able to, please do so - the link is here: https://www.crowdrise.com/virology-...e-reporting-on-pace-mecfs-and-related-issues1.

    Update #2 posted on CrowdRise - https://www.crowdrise.com/fundraiser/campaign-updates/1306193#!/status/2
    The response from the community to my campaign has been incredible--beyond what I imagined when I launched it a few weeks ago. I’ve been enormously touched and heartened by the donations and comments. I certainly didn’t think I would have to consider what I’d do if I over-shot my goal of $60,000. But yesterday the donations passed $55,000, and that has triggered Erica Verillo’s amazingly generous $5000 matching contribution. I’ve now secured my half-time position for the next 12 months, with 10 days more to go in this campaign. So I need to explain why I hope people continue to donate.

    PACE-busting is a big, big job! Basically, more donations will allow me to do more. Over the last year or so, I’ve been asked by many people in many countries—Australia as well as across Europe, in addition to the U.K.--to visit and expose the harms caused by their own domestic PACE/CBT/GET ideological brigades. Since February of 2016, I’ve gone to the UK four times and once to the Netherlands, for research and interviews as well as talks in Amsterdam, Belfast and London. I have travelled as cheaply as possible, crashing with friends and sometimes staying in hostels--I haven’t noticed many others of my advanced age in these dormitory rooms! But the costs have still added up.

    In the next 12 months, I hope to go to Australia, because the situation there is awful, and take at least two more times to the U.K. and hopefully to one or more of the other European countries suffering under this terrible burden. In addition to conducting research and interviews, I will seek to arrange talks to both patient groups and professional/academic audiences; these talks, I have seen, are an important means of spreading awareness of what’s gone on. I will budget up to $10,000 for travel—about half for Australia, and the other half for Europe. Any additional funds will be used to extend my Berkeley appointment proportionally beyond next June 30th--for a month, two months, or whatever.

    Before the end of the campaign, I am hoping to post another couple of blogs. One is about an 87-year-old retired GP who was patient #234 in the Royal Free outbreak. The second is about an issue I have tip-toed around and finally raised in my Invest in ME talk: Is PACE a case of scientific misconduct? (It’s probably not hard to figure out what my answer will be.)

    What else will I be working on over the next year? I plan to smack down the recent Cochrane review, which was able to conclude that GET worked only because of the egregious decision to include PACE and other Oxford criteria studies. I plan to look at the challenges people face in obtaining desperately needed help from government agencies and insurance companies. I plan to examine the PACE investigators’ conflicts of interests, including their intervention in specific cases in which patients have sought benefits. I want to track down other surviving patients from the Royal Free outbreak, and to deconstruct the 1970 paper that reinterpreted that that seminal event as a case of mass hysteria. And so on.

    I certainly have my work cut out for me! Even though I have reached my initial ambitious fund-raising goal, every additional contribution will be put towards a single purpose--helping me bust the false PACE/CBT/GET paradigm for good.
     
    dangermouse, Roy S, MEMum and 17 others like this.
  2. JaimeS

    JaimeS Senior Member

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    Tuller is officially over the top at 103%. Wow!
     
  3. Luther Blissett

    Luther Blissett Senior Member

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    Thank you to everyone who donated, a big :hug: to all.
     
    dangermouse, JaimeS, MEMum and 6 others like this.
  4. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    Done again.
     
  5. Kati

    Kati Patient in training

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    Bump! This campaign is not over! let's send David to Australia, and back to UK again!
     
  6. JaimeS

    JaimeS Senior Member

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    Done again -- and he's at 105%.
     
    dangermouse, MEMum, Hutan and 7 others like this.
  7. trishrhymes

    trishrhymes Senior Member

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    After today's Lancet article on the latest Peter White travesty of research, and the Daily Telegraph uncritical article saying we can get better with exercise, the only possible response is more funds for David Tuller. I have therefore just given a bigger donation than my last one. This madness has to stop. Thank you David.
     
    dangermouse, Dolphin, Hutan and 14 others like this.
  8. lnester7

    lnester7 Seven

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    I am still trying to understand that one, was it on new patient cohort or the same patient cohort from PACE? if it is new where was this paper again ? I would like to read it.,
     
    dangermouse likes this.
  9. trishrhymes

    trishrhymes Senior Member

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    It's a different trial called GETSET testing a booklet and on-line physiotherapist advice approach to graded exercise therapy. Another pile of crap.

    The thread on it is here:
    http://forums.phoenixrising.me/index.php?threads/getset-white-in-lancet-22-06-17.52402/
     
    dangermouse, lnester7 and MEMum like this.
  10. LaurelW

    LaurelW Senior Member

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    I've tried three times, and the page won't let me donate. After I fill out all the info and hit the donate button, the page refreshes but won't do anything else. Any clues?
     
  11. Invisible Woman

    Invisible Woman Senior Member

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    Just donated again using the link at the top of this thread and didn't have any problems.
     
  12. Jennifer J

    Jennifer J Senior Member

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    I was wondering if anyone has frequent flyer miles from flying or charging things on their charge card, or knows anyone that does?

    I knew an older lady a few years ago that had all these frequent flyer miles from using her charge card and she could give them to other people so they could fly for free. Perhaps, people can do this for David so he wouldn't have the expense of flying?

    Also, if anyone has connections, certificates, etc to get him in hotels for really cheap or free so he can be fresh and rested from not staying at youth hostels, or could house him (if David is comfortable with that), that would help extend his finances, too, and be nice for him.

    Thank you everyone that contributed to his fund :thumbsup:, and thank you David Tuller! :hug:
     
    Last edited: Jun 28, 2017
  13. Sean

    Sean Senior Member

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    Worth highlighting.
     
  14. JaimeS

    JaimeS Senior Member

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    Topped $70,000, folks. Incredible.
     
  15. GreyOwl

    GreyOwl Dx: strong belief system, avoidance, hypervigilant

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    I can assist David Tuller with various resources if he's in Melbourne (Australia) later this year.

    In case he's reading this...
     
  16. mango

    mango Senior Member

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    Mel9, Jennifer J, slysaint and 4 others like this.

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