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  1. Alvin

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    I understand, tell him off if you wish, will that get us money? Are the dollar amounts to each disease decided by congress and unchangeable, can he get back the money that was allocated but not spent for two(?) decades for ME/CFS, does he have a discretionary account to draw on, can he lobby...
  2. Alvin

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    My point is be ready for this answer and have a thought out answer ready. What options does he have that we can press for use to our benefit? If you want to win a battle it helps to understand how your adversary works and what his options are. When you anticipate what unhelpful answers your...
  3. Alvin

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    Your not going to get any argument from me since i completely agree with you but you don't go crazy on someone who holds the purse strings and expect him to help you. The reason i mentioned it was so we could have an answer for this likely response, and you get more flies with honey then...
  4. Alvin

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    His answer will probably be that they don't have the resources and his hands are tied and he is doing everything he can in the current climate (and then will explain what we already know or throw in a tidbit) So whats a good reply to such an answer?
  5. Alvin

    Trial By Error: Professor Michael Sharpe’s Gaffe on Australian Radio

    Yeah, here https://www.s4me.info/threads/michael-sharpe-skewered-by-johnthejack-on-twitter.3464/page-6#post-63860 But if it wasn't my post that inspired it thats fine, just glad to see it used :)
  6. Alvin

    Trial By Error: Professor Michael Sharpe’s Gaffe on Australian Radio

    My Kinsley Gaffe reference made it into an article, *happy dance* :emoji_blush::emoji_dancer: :emoji_champagne_glass: :emoji_cake: :emoji_shaved_ice: Okay, i had my moment, PEM has brought me back to earth :emoji_zzz: Edit: Why does being happy for a few mins cause such a crash so quickly, i'm...
  7. Alvin

    Michael Sharpe skewered by @JohntheJack on Twitter

    @Alvin is honoured to have inspired posts. He should perhaps use this disclaimer in similar situations :) I agree :( True I understand what your getting at but if we don't challenge him then many will believe his tripe, we have not defeated the PACErs yet, we may be on the way but we are...
  8. Alvin

    Healthwise to "retire the GET/CBT topics" from medical content

    Thats probably the best way to handle tweeting MS from another thread
  9. Alvin

    Healthwise to "retire the GET/CBT topics" from medical content

    I agree, we have a very uphill battle
  10. Alvin

    Healthwise to "retire the GET/CBT topics" from medical content

    It could be. In the end since science does not work on testimonials no matter their source, they can claim all they want it amounts to bupkis.
  11. Alvin

    Ongoing ME/CFS treatment research

    I believe you are correct, i didn't realize he was trialing two treatments. DCA has also been discussed and i don't think it will work well or for long but its probably available to buy somewhere if you want to risk it
  12. Alvin

    Ongoing ME/CFS treatment research

    Your $200 is safe, its already disproven https://www.s4me.info/threads/a-novel-nutriceutical-treatment-of-me-cfs-frank-comhaire-sept-2017.1036/page-6#post-64881
  13. Alvin

    Michael Sharpe skewered by @JohntheJack on Twitter

    Thats basically the crux of the argument, he is desperately searching for an excuse that can't be skewered.
  14. Alvin

    Healthwise to "retire the GET/CBT topics" from medical content

    I doubt it, its probably a statement they assume you can't disprove.
  15. Alvin

    New York State: Department of Health info page

    Its hard to say, on one hand he will probably find out the tide is turning sooner or later, on another this will force his hand which could turn out good for us or work against us, hard to be sure which.
  16. Alvin

    Michael Sharpe skewered by @JohntheJack on Twitter

    I suppose we can't expect everyone to understand the issues like we do, though that galls me that ridiculous nonsense is convincing to people. I suppose that explains politics :emoji_face_palm: Thats an interesting question, though the crux of his beliefs seems to be there is no medical test...
  17. Alvin

    A Novel Nutriceutical Treatment of ME/CFS, 2017, Comhaire

    It was tested and it failed to reach significance https://www.s4me.info/threads/kpax002-as-a-treatment-for-myalgic-encephalomyelitis-chronic-fatigue-syndrome-me-cfs-a-prospective-randomized-trial-2018-montoya-et-al.3410/ Also you can buy most of the ingredients yourself, just get your doctor to...
  18. Alvin

    Michael Sharpe skewered by @JohntheJack on Twitter

    I think we are falling into the same trap as mainstream media. They built a house of cards, in order to keep it from collapsing they are using any explanation they can come up with to either confuse us, keep us perpetually spinning our wheels or explain it away with concepts we can't refute. If...
  19. Alvin

    Michael Sharpe skewered by @JohntheJack on Twitter

    Indeed, sometimes being overtired makes me think more creatively (if garbled) Also if a great writer wants to steal that line they is most welcome to it :rofl:
  20. Alvin

    Michael Sharpe skewered by @JohntheJack on Twitter

    I think my head is going to explode :emoji_face_palm: Since the real goal was to get people back to work and activity was a proxy for ability to work hence measuring it would indicate their recovery from this "terrible mindset" though i think they are/had to rewrite history in order to cover for...
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