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  1. Allele

    Michael Sharpe skewered by @JohntheJack on Twitter

    Yes, but this is how it has been for him/BPS. Until now.
  2. Allele

    Deconstructing post-exertional malaise in myalgic encephalomyelitis/ CFS: A patient-centered, cross-sectional survey, Chu et al, 2018

    Lily Chu has been quietly and humbly being our champion and ally for so many years, and I am continually blown away by her contributions. Of course it goes without saying that so have Montoya et al, but I wanted to take a moment to offer a much-deserved shout-out to Ms. Chu who has stayed the...
  3. Allele

    Med Students Still Do Pelvic Exams on Women Under Anesthesia

    That's so great, Inara, thanks for doing that. I look forward to hearing if/when you get a reply. I wonder who one would write to in the US? Surgeon general's office?
  4. Allele

    Everybody was telling me there was nothing wrong

    I'm reminded of this awful story from a few years ago: https://www.theatlantic.com/health/archive/2015/10/emergency-room-wait-times-sexism/410515/
  5. Allele

    Opinion piece: If only Brexit had been run like Ireland’s referendum [not posted for the politics]

    I heard a more recent interview with Hillary Johnson, where she was fairly scoffing at the personalized advocacy efforts. I don't agree with her that it is maudlin or what have you to tell the personal stories, I think they are crucial--but I do agree with her that the long political history of...
  6. Allele

    Med Students Still Do Pelvic Exams on Women Under Anesthesia

    When I was in my twenties I was counting down from 100 right before a gyno operation. The doctor and anesthesiologist (males) were cracking jokes about my pubic hair right as I went under.... I have long wondered with disgust what happened to me after that. What a horrible world this can be...
  7. Allele

    Med Students Still Do Pelvic Exams on Women Under Anesthesia

    (Transcription available underneath video at the link, for those who don't do video.) https://www.medscape.com/viewarticle/896847?src=soc_fb_180529_mscpedt_news_mdscp_pelvicexams&faf=1
  8. Allele

    Michael Sharpe skewered by @JohntheJack on Twitter

    Yes, specific sockpuppet aroma wafting from that account.
  9. Allele

    The New Yorker, Article: Memoirs of Disease and Disbelief, May 2018

    Wow, yes, great review. I was surprised by its thoroughness. I did wonder what the author meant by this: I am quite brain dead today so could someone please Dumbsplain if I missed something.
  10. Allele

    The ME Show

    Another fantastic episode. Thank you Gary!
  11. Allele

    Janet Dafoe - The Whitney Plea

    I don't mean to pick nits, but this is not a British/American thing, this is a we-need-to-up-our-communications-game-if-we-are-to-be-a-united-patient-group thing. There will never ever be 100% data accord between any two people let alone in a group. Having likes/dislikes is one thing; having...
  12. Allele

    Janet Dafoe - The Whitney Plea

    If there's any religion in this scenario, it's Collins. He's overtly Christian, and that was part of his whole brand when he became head of NIH. He has written a book about faith and science. (I'm not religious but it is my opinion that a person of faith in his position might do well to be more...
  13. Allele

    Janet Dafoe - The Whitney Plea

    Thank you, @Forbin, I am on there after all. I had a hard time navigating all the different alphabetized categories, and had done a command-F which yielded nothing (turns out the document is unsearchable but it doesn't alert you to that.) Thanks to you I found myself, so to speak.
  14. Allele

    Janet Dafoe - The Whitney Plea

    There is a link at the bottom to see the PDF sent to collins. It's powerful, with great photos from around the world of MM, the letter, and the long list of signatories (which somehow omitted mine:( ) So rest easy, signers, the video is not associated with the signatures.
  15. Allele

    Janet Dafoe - The Whitney Plea

    I reread the MEAction page, and it does seem like the video was sent separately. The people at MEAction may like to clarify, but it seems clear the signatures are on the letter and the video is a separate deal. The folks at MEAction are pretty smart, and not a remotely a "manipulative" bunch...
  16. Allele

    Michael Sharpe skewered by @JohntheJack on Twitter

    He is using classic gaslighting. There is no "winning" with a gaslighter besides ignoring them when they're doing it. Everything one does or says in response becomes fuel for further reality-twisting. Don't feed the trolls! Trust me, he jizzes a little every time someone engages him on this...
  17. Allele

    Janet Dafoe - The Whitney Plea

    I also had some reservations originally but find that what was sent was much more contextually powerful, clear, and meaningful. I agree with @MsUnderstood that it was a fine piece of messaging, and wove together the strongest aspects of the personal and the political in a skillful way. I also...
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