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  1. RedFox

    Long COVID patients need scientific ambition, not defeatism

    Thank you for getting this message out. Biomedical research is what we truly need.
  2. RedFox

    The nanoneedle salt stress test – too good a clue to leave abandoned on the lab bench?

    I think this is good news. I was very annoyed when I heard that nanoneedle wasn't going anywhere because of funding. Now let's see if this is for real.
  3. RedFox

    Long COVID research goes private

    Long COVID research goes private https://www.npr.org/2024/02/06/1229602764/long-covid-research-goes-private NPR segment discussing how there's an increasing amount of privately funded LC research. They talk to Amy Proal and others.
  4. RedFox

    Long Covid drug BC-007 research news

    This is further discussed on Reddit, including a complete translation of the interview: BC007 Interview on trial progress
  5. RedFox

    New German Trial for Rituximab? (High Dose)

    That's ridiculous. PwME should be allowed to decide what treatments they want. If it works but renders people infertile I would take it. I don't care because I never want children.
  6. RedFox

    In vitro B cell experiments explore the role of CD24, CD38 and energy metabolism in ME/CFS, 2023, Armstrong et al

    I've never thought a defect in energy production was the main cause of ME/CFS. I think energy production is impaired because the cells are shifting into a "defensive" state for some reason. Perhaps immune signals.
  7. RedFox

    Advice on mask-wearing to protect against Covid-19

    That's also completely and utterly false, it's misinformation pushed by the CDC in the early stages of the pandemic. Let's first look at a few terms: Source control: Preventing an infected person from spreading to others. Infection control: Preventing the wearer from getting infected. Good...
  8. RedFox

    Advice on mask-wearing to protect against Covid-19

    I hastily found this paper which discusses how particulate filters work: An overview of filtration efficiency through the masks: Mechanisms of the aerosols penetration. They're not like screens that only catch particles smaller than the screen. They trap larger particles by screening them, but...
  9. RedFox

    Advice on mask-wearing to protect against Covid-19

    Completely false. N95s filter small particles effectively. They are rammed into the filter material by Brownian motion.
  10. RedFox

    1/18/2024 US Senate hearing on Long Covid of the HELP (Health, Labor, Education & Pensions) committee

    Transcript: Chris Cuomo: I started this Substack at thechriscuomoproject.substack.com because we need communities on Long Covid were people can trade information about symptoms and what they're doing and if anything is working. Nearly 20 million Americans may have this, and I say may...
  11. RedFox

    If I'm immunocompromised, how often can I get the Covid shot in the USA?

    If I'm immunocompromised, how often can I get the Covid shot in the USA? And how to get it in practice? I would like to get it more often than yearly like healthy people do. I'm going to tell them I'm immunocompromised because I have ME. (I'm not here to argue about the veracity of that...
  12. RedFox

    Trial Report The effectiveness of COVID-19 vaccines to prevent long COVID symptoms: staggered cohort study of data from the UK, Spain, and Estonia, 2024, Català +

    Can someone please figure out if this estimate includes vaccine effectiveness? E.g., are they comparing the LC rate among people infected, or the LC rate among all people?
  13. RedFox

    If you had to guess ME/CFS cause, what'd you say?

    I only notice that if I go way past my PEM threshold, I'll be immediately tired but it shifts into full-blown crippling PEM, but if I go just over my threshold, I will feel ordinary tired, recover, but then experience PEM later.
  14. RedFox

    If you had to guess ME/CFS cause, what'd you say?

    I also have differences between physical and mental PEM. Physical PEM tends to hit 3-12 hours after activity, the more intense it was, the shorter the delay. The fatigue is different for ordinary tiredness, which I experience too. When I have PEM I'm so tired it's almost like I've been tied...
  15. RedFox

    Review [ME/CFS] as a complication of COVID-19 post-acute syndrome in adults. Bibliographic Review 2023 Carrillo Uguña and Orellana Romero

    These authors are well-informed on ME/CFS. My translations are rough around the edges but give a good feel for the authors' views. I included the first few words from the original-language text to facilitate looking it up. They're well aware ME/CFS is often poorly understood: PEM is the main...
  16. RedFox

    How do I get a DNR/DNI?

    I think you're getting at the core of my problem because I don't know if the solution is a lawyer or a doctor. Or a lawyer telling me what to say to a doctor. I don't think it would hurt to give my lawyer a call.
  17. RedFox

    How do I get a DNR/DNI?

    Title. Jurisdiction is Pennsylvania, USA. Because I have very poor quality of life, I want to make sure I'm never resuscitated or intubated, no matter what. I got an advance directive that requests DNR/DNI/comfort care only, which should work in healthcare facilities. (Getting a DNR is wholly...
  18. RedFox

    Open ME Association: The UK ME/CFS Post Mortem Tissue Bank and Tissue Donation

    Long-term follow-up: I put the following in my advance directive:
  19. RedFox

    Trying the antiretroviral drug Tenofovir

    I am taking Truvada for its intended usage to prevent HIV. I'm taking it as 2-1-1 PrEP, which fits with my lifestyle and should minimize side effects. I did a dry run when I got it, taking it for 3 days as explained, and it had no apparent affect on my ME symptoms. It caused mild, sporadic side...
  20. RedFox

    Dr. Anthony Fauci on Long Covid and ME/CFS

    It's disappointing that he only advocates for us after he retires. Maybe he's no longer pressured by his colleagues or has more time to ponder things.
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