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  1. Allele

    Michael Sharpe skewered by @JohntheJack on Twitter

    I understand your caution, Esther, but these events are not rare if we can start counting the people who have undergone it on many hands. If patients are not being forciby removed, families live in threat of that. This quiet deadly truth needs to be known. PACE is the paper that most broadly...
  2. Allele

    Children’s views on research without prior consent in emergency situations: a UK qualitative study, 2018, Woolfall et al (including Crawley)

    I'm confused. Isn't the child's parent or legal guardian the one(s) to make medical decisions on their behalf? Why is this even a question then? Or is medical "research" in a legal grey area.
  3. Allele

    Michael Sharpe skewered by @JohntheJack on Twitter

    Why aren't the twitter responders also pointing out that PACE and its promotion is directly responsible for the not uncommon phenomenon of children (and adults!) being forcibly removed from their homes and care networks, denied proper and appropriate medical treatments, traumatized, and abused...
  4. Allele

    UK 7 June 2018 | MSPs discuss ME treatment on Holyrood Live

    I only just now spotted this thread and watched the video. @Emsho, you were terrific! All three of you were amazing, thank you for such powerful advocacy :heart:
  5. Allele

    Michael Sharpe skewered by @JohntheJack on Twitter

    Yes, and worse still, is directly responsible for families being harassed, accused, and and torn apart by the forced or coerced sectioning of the ME patient under the mental health act, which has lead to catastrophic worsening of the patient's health as well as fear of seeking medical or social...
  6. Allele

    Michael Sharpe skewered by @JohntheJack on Twitter

    [deleted for tact]
  7. Allele

    Michael Sharpe skewered by @JohntheJack on Twitter

    There's no consensus bc BPS cabal have monopolized the narrative for thirty years, and through bad PR/fake news discouraged legit researchers from researching it (until now.) And as Donner said, And most certainly no harrassment/legal action/kidnapping of families struggling with this...
  8. Allele

    The ME Show

    :emoji_trophy::heart::angel::angel::angel::heart: :emoji_trophy: @Trish, @Gary, Hannah
  9. Allele

    Michael Sharpe skewered by @JohntheJack on Twitter

    "Understanding all illnesses". (I can't even invoke the proper language for this hubris)
  10. Allele

    Michael Sharpe skewered by @JohntheJack on Twitter

    And not by accident. These people prepared deliberately misleading press releases and did panels/press/speaking tours about it. "I wasn't there" just doesn't cut it. They were all there, promoting and disseminating illegal made up harmful medical fairy tales. Unbelievable that they are not held...
  11. Allele

    Michael Sharpe skewered by @JohntheJack on Twitter

    I genuinely agree it's past time to stop engaging him. ETA: Unless it's simply to point out reality; locking horns with his garbled nonsense feeds his endgame.
  12. Allele

    Michael Sharpe skewered by @JohntheJack on Twitter

    Responsibility all the doctors? How clueless is this man? Most of us have spent years, if not decades, educating our own health care teams, managing our own medications, researching, balancing all the aspects of life that get tangled in a chronic illness, managing our basic needs most take for...
  13. Allele

    #MillionsMissing today, 12 May - post news, tweets, etc. here

    I just finished watching the segment with Karin's speech. I gasped out loud at the second state reporting, out of control ignorance. Devastating, powerful, heartbreaking, brave. The worldwide suffering of this disease is just too much, and totally unnecessary--it must stop now! Humans can do...
  14. Allele

    Psychiatry – the medical speciality that combines empathy and science

    Psychiatry--"the medical specialty that combines a pathological worldview with absolute power."
  15. Allele

    We bought a house!:)

    Wonderful news, so happy for you!
  16. Allele

    Occupy ME blog post: NIH Time Warp

    Is jennie on s4me?
  17. Allele

    Medicare will become insolvent in 2026, U.S. government says (2018) LA Times

    Haha @TiredSam, I'd forgotten all about this hilarious/discouraging video! So good!
  18. Allele

    Medicare will become insolvent in 2026, U.S. government says (2018) LA Times

    "Truth" is not a bad word. I don't suggest labelling someone as "truther" in the pejorative when you don't like what they are saying, because it shifts actual Truth into a murky space when you use it as a slur. None of us want that. Truth is always best, even if uncomfortable to face. If you...
  19. Allele

    Medicare will become insolvent in 2026, U.S. government says (2018) LA Times

    Because ever more trillions for endless wars makes so much more sense :banghead::(
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