Search results

  1. RedFox

    Post-Traumatic Stress Disorder and Chronic Pain Conditions in Men: A Twin Study, 2020, Gasperi et al

    Finding a correlation between PTSD and chronic illness is not surprising. The ACEs study found that childhood trauma raises your risk of many illnesses, including those nobody believes are psuchosomatic, and can take decades off your life. A likely mechanism is that trauma makes it difficult to...
  2. RedFox

    The effectiveness of activity pacing interventions for people with CFS: a systematic review and meta-analysis 2022 Casson, Lloyd et al

    *Record scratching sound* That's a dramatic change in tone. Also, it would be hard to prove pacing actually works, due to the same issues that plagued PACE. A slight difference is that we market pacing as a symptom management strategy, not a treatment.
  3. RedFox

    Long Covid in the media and social media 2022

    A smart and balanced article. The title was ambiguous, but fear not. They're not comparing patient advocates to non-doctors pushing hydroxychloroquine--they're comparing people pushing GET to it, because it's unproven in long Covid. The gist of the article is that PACE was pretty bad, and that...
  4. RedFox

    Suppose you have €5-10 million for ME/CFS research, what would you spend it on?

    I also actively want my body to be used for research, assuming knowledge about ME is still scarce once I die.
  5. RedFox

    Microglia states and nomenclature: A field at its crossroads, 2022, Rosa C.Paolicelli et al

    Very deep and interesting read. Summary of what I read so far: Microglia aren't either resting or activated as many assume. They're constantly active, but play different roles at different times. They are highly receptive to their chemical environment, so subtle signals can change their...
  6. RedFox

    Suppose you have €5-10 million for ME/CFS research, what would you spend it on?

    Develop the nanoneedle into a commercially available test for ME or prove conclusively it doesn't work. If we succeed, we'd make ME easily diagnosable and prove it's physical. We'd also have a platform for in vitro research--we could try different drugs on the blood of pwME and see if it makes...
  7. RedFox

    Saliva fatigue biomarker index as a marker for severe ME/CFS in a community based sample, 2021, Jason et al

    Overstating their findings and potential undisclosed conflicts of interest? Very disappointing to see when our lives hang in the balance.
  8. RedFox

    New York Magazine - Intelligencer: Has Long Covid Always Existed, by Jeff Wise, November 2022

    True. I experienced PEM for three years before I heard the term "post-exertional malaise."
  9. RedFox

    High-dose coenzyme Q10 therapy versus placebo in patients with post COVID-19 condition: randomized, phase 2, crossover trial 2022 Hansen et al

    We seem to have missed the fact that this paper is a milestone: It's the first completed, rigorous trial of a long Covid treatment I know of.
  10. RedFox

    Holistic or harmful? Examining socio-structural factors in biopsychosocial model of chronic illness,‘MUS’& disability, 2022, Hunt

    It's very mixed, a little over half of commenters leaning towards biological and the rest towards psychological. Insightful excerpts from the biomedical comments: A reply to a comment discussing how pwME are angry at BPS ideology: The most insightful one recognizes both the biological nature...
  11. RedFox

    Study finds first direct evidence of a link between low serotonin and depression

    I'm sure there's way more pieces to this puzzle than levels of chemicals.
  12. RedFox

    Feasibility of therapeutic music listening in fibromyalgia: a randomised controlled pilot study 2022 Raglio et al

    Why research the pathology of a disease when you can just say that music therapy works and declare victory? heh
  13. RedFox

    Elevated ATG13 in serum of pwME stimulates oxidative stress response in microglial cells , 2022, Gottschalk et al

    They found something new in a small study...that a whopping two people with ME have elevated levels of ATG13 and that microglia don't like it. This is a brainstorm, not a real hope. While their research appears novel, all scientists should present their findings realistically, especially if...
  14. RedFox

    New York Magazine - Intelligencer: Has Long Covid Always Existed, by Jeff Wise, November 2022

    The main problem was that they tried too hard to represent "both sides." They also called it "chronic fatigue", only mentioned PEM once, and covered the BPS model in details while not giving any of the evidence it's biomedical--just that doctors believe it is, not the actual findings. And they...
  15. RedFox

    High-dose coenzyme Q10 therapy versus placebo in patients with post COVID-19 condition: randomized, phase 2, crossover trial 2022 Hansen et al

    Kudos to the authors. They interpreted their answers honestly instead of trying to puff them up. It's not a positive answer...but I will welcome any solid answer in this disease, because even "no's" get us closer to the truth.
  16. RedFox

    What is the quality of life in patients with long COVID compared to a healthy control group? 2022, Liska et al

    This. When scientists on my side publish bad research, I'm going to call them out as vigorously as when Trudy Chalder does it. Using such a control group doesn't entirely invalidate their research, as we know that being at 66% physical function is still a lot lower than age-matched healthy...
  17. RedFox

    How do I get a 2-day CPET I can afford?

    Also...my mental issues will probably lead me down a road of pretty extreme self-harm (e.g. GET or self-help GET) if I ever "lose faith" in the idea I'm actually sick. Really it's not the CPET I want...I need some sort of absolute proof I'm suffering from an actual illness. Is there a more...
  18. RedFox

    How do I get a 2-day CPET I can afford?

    What if it affects how my mental health is managed? I'm sorry, I simply cannot go on without incontrovertible evidence I'm sick. I don't even care if it doesn't discriminate between diseases. I just need as much information on this as possible. This is the best thing I can do besides seeing an...
  19. RedFox

    How do I get a 2-day CPET I can afford?

    This is also very deeply entwined with my mental health issues. Every time I try to get this test, and something stops me, I begin spiraling emotionally. I feel extremely powerless and dysphoric with a strong sense of (for lack of a better term) moral injury.
  20. RedFox

    How do I get a 2-day CPET I can afford?

    I understand anyone with the right equipment can to a 2-day CPET. I think the problem is lack of someone to interpret the results. What I personally want is a data file of the breath-by-breath data so I can see it myself, but I also need a professional to write a report saying something like...
Back
Top Bottom