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  1. Louie41

    Preprint Fatigue >12 weeks after coronavirus disease COVID is associated with reduced reward sensitivity during effort-based decision making, 2024, Scholing+

    I too was struck by how this seems to be related to "effort preference." Also, I wondered how they could separate out fatigue from "depressive symptoms" since they are both characteristic of acute illness. More psychologizing, I guess, to no useful purpose..
  2. Louie41

    Is “inability to recover and improve from exercise” a core component of ME/CFS? How common is it?

    In the US, current stroke treatment requires that you perform exercise for your brain to develop new pathways to compensate for the injury caused by the stroke. When I had my stroke in 2022, I was told to practice getting out of my living room chair into my wheelchair five times in a row every...
  3. Louie41

    The Concept of ME/CFS

    I take it as a given that you know what you're talking about, @Jonathan Edwards. In my knowledge, there is often a difference between the way a particular word is used by everyday people, and the way that same word is used within a profession. This may be obvious, but it seems to me that...
  4. Louie41

    The Concept of ME/CFS

    I have been disturbed by this, and consequently haven't made any reference to it to my new PCP (primary care provider).
  5. Louie41

    The Concept of ME/CFS

    I know that I have mentioned it before. As I recall, one of the researchers into ME/CFS, whose name I can't remember at the moment, found that this helped, and I take it in the dose he tested. Given my current inability to remember the details, I'd caution you to approach carefully. My GP...
  6. Louie41

    The Concept of ME/CFS

    I almost included that in my list, as it's been a severe problem earlier, but not since I've regularly taken N-acetyl cysteine. It would be highly desirable to get some good research behind that.
  7. Louie41

    The Concept of ME/CFS

    ??? This captures my experience well. I know I should rest much more than I do, but I seem unable to most of the time. Thank you so much, Jonathan, for asking these questions and for listening to us! I've found this whole discussion provocative and enlightening. I seem to get PEM, but I...
  8. Louie41

    The Concept of ME/CFS

    That's not quite what I'm driving at. My own situation is that, when I have reviewed the various efforts to characterize severity that have appeared on the forum, I usually rank as severe or very severe, though not bedridden. I have had no relief of the feeling of "lack of life force" for 35...
  9. Louie41

    The Concept of ME/CFS

    I'm coming unfortunately late to this discussion, but I remember well the distinct feeling, after recovering from a flu, that there was something definitely wrong and that it was systemic. I kept telling my doctor that there was something systemically wrong with me. I felt as if the life force...
  10. Louie41

    Dr. Anthony Fauci on Long Covid and ME/CFS

    How many decades ago was that now? I don't have the same opinions on every subject from that long ago time that I have now. I have learned. And changed. And I hope I might be forgiven for any faulty ideas I might have held way back when. I for one am glad that Fauci speaks out today, and...
  11. Louie41

    USA: News from Solve ME

    Merged thread An expanded agenda for Solve Not sure howI feel about this, but today I got this in an email from Solve: " In 2021, Solve co-founded the Long Covid Alliance (LCA) with a simple vision: create a space where all voices affected by post-infection chronic conditions, especially...
  12. Louie41

    News from the USA, United States of America

    Merged thread Minnesota's leading epidemiologist gets Long Covid Osterholm learns firsthand what long COVID does Epidemiologist is wary about future variants. By RACHEL HUTTON rachel.hutton@startribune.com Michael Osterholm, Minnesota's longtime infectious disease specialist and Biden...
  13. Louie41

    Anyone has a stair lift at home ? (Moving, part II)

    I haven't changed my mind, except that I perhaps appreciate our stair lifts more than I did in 2019. We bought ours from a manufacturer in Wisconsin, and they've held up remarkably well. My only dissatisfaction comes from the amount of time it takes to get service. But I think that can be...
  14. Louie41

    Oral cancer/general anesthesia

    I'm so sorry to learn of this trouble, @SunnyK. I agree with @Arnie Pye that you need a lot more information before proceeding, and her questions are good ones. Will this be a Mohs type of surgery, where smaller portions of tissue are removed until the margins are clear by microscope, or are...
  15. Louie41

    Paucity of ME/CFS research in 2022

    Some of the U.S. ME patient organizations seem to be focusing on LC more than ME. This worries me.
  16. Louie41

    USA: News from the Bateman Horne Center

    I received the following invite from the Bateman Horne Center, making me wonder if there's any actual science behind the assumptions noted: Support Group: Tuesday, October 11th @ 1 pm MT Join us on October 11th for our online Support Group led by Meredith Mehner, a licensed clinical social...
  17. Louie41

    Electromyography test - what’s it like?

    I've had this test twice. Both times, I found that by totally accepting and not resisting the shocks, and focusing on keeping my breath steady, I didn't experience pain per se, but rather sensation that was similar to a pinch.
  18. Louie41

    News from Doctors with ME

    This is just sad.
  19. Louie41

    Simple qigong routine for flexibility

    Thank you, @TigerLilea!
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