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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David Tuller needs our help

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

  1. Kalliope

    Kalliope Senior Member

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    102% now raised
    Thank you so much Erica Verillo!

    :balloons::):balloons::):balloons:
     
  2. MeSci

    MeSci ME/CFS since 1995; activity level 6?

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    Woo hoo! Thank you, everybody who contributed in every way!
     
    dangermouse, Solstice, MEMum and 10 others like this.
  3. Mary

    Mary Senior Member

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    One other possible effect of DT's letter to the University may be to get EC to tone down her rhetoric a bit. I agree it's unlikely in the extreme that David would actually sue for libel, but even so, the university might just ask Ms.Crawley to be a bit more circumspect in her comments - whether or not that would be a good thing, however, I can't decide. The more ludicrous and outrageous EC's statements, the easier target she makes.
     
    Barry53, lilpink, Solstice and 12 others like this.
  4. A.B.

    A.B. Senior Member

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    Thanks to all donors. Glad to hear that Tuller will also look into the biased Cochrane mental health group.
     
    lilpink, Solstice, MEMum and 7 others like this.
  5. Barry53

    Barry53 Senior Member

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    Just read about this wonderful talented lady. Sincerest thanks.
     
    Solstice, MEMum, Dolphin and 5 others like this.
  6. Barry53

    Barry53 Senior Member

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    Almost worth thinking of it as a table with however many legs. Obviously PACE itself is one and Cochrane another. Any others. Tackle one at a time.
     
    dangermouse, Solstice, MEMum and 4 others like this.
  7. Hilary

    Hilary Senior Member

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    Or a tent with a certain number of pegs. Pull one peg out, then another, until the tent is flapping in the breeze and eventually blows off the cliff edge.
     
    Solstice, MEMum, Dolphin and 9 others like this.
  8. Barry53

    Barry53 Senior Member

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    Exactly. The principle is that each peg pulled out has more effect than the previous one. Comes a critical point where the remaining pegs have less holding power than the wind has pulling power ... And out of the ground the whole sorry mess comes. Yes, I prefer the tent. Each peg removed is a bigger and bigger proportion of those left, and I have no idea if the math of a flapping tent but I imagine each additional freedom to flap must disproportionately increase the stresses on the remaining pegs. Suspect it maps quite well on the problem in question.

    In fact it's more like still trying to remove a peg that is almost out but still hanging in there. Instead start on other pegs so all the flapping helps finally tug out the earlier ones.
     
    lilpink, Solstice, MEMum and 6 others like this.
  9. boolybooly

    boolybooly

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    Thanks Erica, it made the difference.
     
    Solstice, MEMum, Hutan and 6 others like this.
  10. Wolfiness

    Wolfiness Activity Level 0

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  11. Never Give Up

    Never Give Up Collecting improvements, until there's a cure.

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    I didn't read this whole thread, so forgive me if this comment is redundant. I just went to Crowdrise to see what the total amount is now($61,675) and noticed something I hadn't in the beginning when I first donated.

    I thought he was doing this on his own! It's much better for him to have UCB creating this position for him! And I like that it includes"other issues related to ME/CFS"! I might just have to go back and donate some more!
     
  12. AndyPR

    AndyPR Senior Member

    And all this achieved without the support of the two main patient charities in the UK - neither AfME (unsurprisingly) or MEA (disappointingly) chose to post this on Facebook. The MEA in particular is puzzling, they have shared David Tuller links before, perhaps they've been told not to support him in this or they won't be allowed back in the CMRC tent...
     
  13. slysaint

    slysaint Senior Member

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    I think the CMRC realise they need to keep the MEA in the tent (the pissing out/in thing).
     
    Countrygirl likes this.
  14. Barry53

    Barry53 Senior Member

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    Feels even more worrying somehow.
     
    slysaint likes this.
  15. Daisymay

    Daisymay Senior Member

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    Predictable yet still shocking.
     
  16. boolybooly

    boolybooly

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    This is the ethical quagmire MERUK highlighted when they decided to leave. Which is why I immediately made a donation to them.
     
    Invisible Woman, Hutan, Sean and 3 others like this.
  17. RogerBlack

    RogerBlack Senior Member

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    Me too. Just waiting till nearer the end of the month, when I will have a clearer idea of how much more I can donate to Mr T.
    I pity the fools.
     
    Jennifer J likes this.
  18. Countrygirl

    Countrygirl Senior Member

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    Just in case this is missed:

    Here is a comment by a parent on Dr Tuller's donation page:

    I donate this small amount for my very brave son; I just wish I could give more. From the age of eight my son has suffered at the hands of GBT, GET and the NHS. He has been told to take responsibility for his illness and recovery, not talk about symptoms. Many times I have held him racked in pain as he sobbed his apologies, wondering how the medical profession got so inhumane. We found out my son has celiac PoTS OI and hypermobile joints, all of which impact on his ME, and the symptoms of which they told us to ignore. He is not deconditioned his body has failed him, when able he runs like the wind, breaking free for a short time from his constant pain, dizziness, sickness, swollen glands like conkers. He is not “fear avoidance” he grabs life by the throat, but laughing can send his HR into 200 beats per minute and it takes days for his BP to settle back down, and like anyone oxygen staved, the consequences are severe.

    Many mothers like me are forced to hide in silence. We hide because we are blamed, to get us off lists so they do not have to report harms or the worsening of condition after treatments? Over 200 parents have gone through FII, none have been charged with Fabrication or Inducing Illness, that should say all there is to say about how we are treated when we have children with ME, but there is worse to come. We are called MUPPETS and we know the smearing going on behind our backs by Doctors, researchers Universities. Still we do not buckle, we stay strong and we learn. We learn how to handle the medical fraternity; we learn how to tell hospital staff when our kids fall ill with chronic pancreatitis, kidney problems and cancers. We support the medical staff when they are at a loss what to do for our very sick kids. We hold them as they crumble with no true information about this common illness, and as they realise they have been fed the wrong social landscaping we teach them how to cope. We hold each other, supporting the best we can as our kids slip away into the abyss of ME. So please support our kids and get behind David Tuller
     
  19. lilpink

    lilpink Senior Member

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    Thank you. I have shared elsewhere.
     
    MEMum, Sean, MeSci and 2 others like this.
  20. Kati

    Kati Patient in training

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    We have now reached 110% funding for David, but it's not over yet, we have 4 more days. More money means that David can travel where the problems are. Can we reach 70,000$ ?
     
    MEMum, Jennifer J, MeSci and 6 others like this.

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