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  1. RedFox

    Reddit - Interesting posts on Reddit, including what some doctors say about ME/CFS

    That's my city. I'm not impressed.
  2. RedFox

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    Gee, I'm glad for the thread because the abstract made it seem promising enough to definitely warrant a larger trial, when it's in fact slightly better than the Rituximab data. It would still be good to do a larger trial, but keep expectations modest.
  3. RedFox

    Assessing the influence of lived-experience experts on healthcare providers in a virtual community of practice: a qualitative study, 2025, Weaver

    They don't have a treatment but a supportive doctor can mean educating someone about pacing, helping them get disability benefits or trying to find a medicine that takes the edge of certain symptoms. It's unfortunate that Long Covid and PAISs are stuck in the pre-science era in terms of...
  4. RedFox

    BBC article about successful immune system med for rare genetic ADPS disorder

    This is very good. it's a drug targeted at the condition's pathology and not gene therapy.
  5. RedFox

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    I don't dislike the whole paragraph. It just needed a little rephrasing. It's true that women in our culture are somewhat more likely to be conscientious about their health. (It's probably not enough to explain a 2-3x difference in prevalence though.) But you're right, that point isn't essential...
  6. RedFox

    Preprint A Proposed Mechanism for ME/CFS Invoking Macrophage Fc-gamma-RI and Interferon Gamma, 2025, Edwards, Cambridge and Cliff

    Thank you to the authors for taking the time to write your thoughts in this paper. You have an interesting and novel hypothesis. As a non-expert, it seems as plausible as any other model of ME/CFS I've seen thus far. I don't think the wording on topics that could be confused with BPS is...
  7. RedFox

    Efficacy of Vitamin D Replacement Therapy on 28 Cases of [ME/CFS] After COVID-19 Vaccination, 2025, Kodama et al

    Same here, I started taking 2,000 IU of vitamin D a day, thinking it might help my energy, and it didn't.
  8. RedFox

    Well-known, famous people with ME/CFS (public thread)

    https://www.phoronix.com/news/Several-Linux-DRM-Orphaned Several Linux DRM Drivers Orphaned Due To Developer Health One of the developers on the Linux Kernel has had to step back from maintaining a few drivers due to a "fatigue illness". While it's a small story, and the developer chose to...
  9. RedFox

    Dianna Cowern, Physics Girl, fundraiser 2024 and other news

    I feel quite sad for her, seeing the awful state she was in last year (and is still in). I'm glad to see she's getting a little better. We should also be grateful of the amount of energy she's expended to remain in the public eye as an activist through all of it.
  10. RedFox

    What could it mean biologically that both physical and cognitive exertion can cause PEM?

    It means the loop that creates PEM could involve signals going through the brain, or that the mechanism for PEM is present in all organs. I highly doubt PEM is entirely generated from the brain, although the brain can do a lot. But there could be some sort of immune or inflammatory signal that...
  11. RedFox

    When you can't find the words: Using body mapping to communicate patients' experiences of Long Covid 2024 Jokela-Pansini et al

    This may be a little bit helpful, it's not a complete waste of time. We need to get better at psychologically supporting people with post-infectious syndromes, by affirming their illness and helping them cope (as opposed to buying into the delusion that you can think yourself better).
  12. RedFox

    What are the most interesting ME/CFS-studies of 2024?

    Thank you for explaining all this. I don't always pay close attention to ME/CFS, especially the big picture, so I appreciate your article.
  13. RedFox

    SequenceME genetic study - from Oxford Nanopore Technologies, the University of Edinburgh and Action for ME

    This is a great idea. if I were an ME charity, I would be digging though my couch cushions to fund this, because I expect it to teach us things that are well worth 7 million quid.
  14. RedFox

    Preprint Safety, tolerability and clinical effects of BC007 on fatigue and quality of life in patients with post-COVID syndrome (reCOVer)..,2024,Hohberger +

    Judging by the graphs, there's no real difference between groups A and B. If the drug worked, you would see group A improve, then group B, but I don't notice anything except that group B seems a little healthier.
  15. RedFox

    Ampligen for ME/CFS

    This sounds like what investment people call "activist shareholders". When a company is doing poorly, sometimes new or existing investors will campaign for replacing the leadership and reform. And indeed, AIM Immunotech is following the typical path of biotech startups. Investing in biotech is...
  16. RedFox

    Medical gaslighting as a mechanism for medical trauma: case studies and analysis, 2024, Shapiro & Hayburn

    I agree strongly with the main premises of the article. Medical trauma is widespread and causes severe harms, and is disproportionately likely to hurt those who are already vulnerable, such as people with developmental disabilities, with pre-existing trauma, or living in poverty. It caused me a...
  17. RedFox

    NYT - A Great Idea for People With a Terrible Disease: Let’s Find a Cure Ourselves

    Very good article that highlights the value of PLRC. I didn't know (or didn't remember) that they funded the study on PEM and muscles, which I think was a novel and important one. I'm very grateful for them because the big institutions still simply don't know how to help us.
  18. RedFox

    Long Covid drug BC-007 research news

    If none of the outcome measures show a meaningful change, crumple it up and can it. It doesn't work and scientists need to spend their effort on other treatments for long Covid. That being said, I'm a bit sad seeing it fail after all the dramatic testimonials of it curing long Covid. A couple...
  19. RedFox

    Do you believe that “viral persistence” is the cause of ongoing MECFS and LC?

    It's been about a year since I last posted this. Much more research has some out, but I still believe the same. They've found precious little evidence for it. It's very unlikely that ongoing infections or viral persistence drive ME or LC. The one trial of Paxlovid in LC that completed failed...
  20. RedFox

    Protocol Paxlovid for Treatment of Long Covid (STOP-PASC), 2022, Singh et al, Stanford University - recruitment stopped June 2023

    This trial was completed and found Paxlovid didn't help. Source: Paxlovid fails to improve long-COVID symptoms in small study
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