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  1. rvallee

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Well, they used to believe that. They still do, but they used to believe that, too. Mitch (E)dberg (B)ased (M)edicine (EBM).
  2. rvallee

    Gut compression syndromes; Nutcracker syndrome; Abdominal Vascular Compression Syndrome

    Predictable, though. Authorities can't claim they don't understand that when they leave people stranded, they will turn to more dangerous alternatives. This is the crux of the entire opioid crisis. The flood of opioid prescriptions is what opened the door, but it's leaving people off with two...
  3. rvallee

    How do you recover from the trauma of systemic disbelief?

    A science youtuber made a video recently, "How I lost trust in scientists". It overlaps a lot with what we discuss here (in general), and is really about the idea that people shouldn't be trusted, only reliable data, science and logic matter. In the video the presenter uses the example of ESP...
  4. rvallee

    A Practical Approach to Tailor the Term [LC] for Diagnostics, Therapy & Epidemiological Research for Improved [Care], 2024, Hoffmann, Stingl+

    This is what LC had to be created for. More or less. Including for other issues that aren't part of the sad roster of discriminated-and-denied chronic illnesses. MDs aren't doing that. Haven't done that from the start, which means most data so far are useless, and still aren't prepared to do it...
  5. rvallee

    Grip test results and brain imaging in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    For backwards compatibility with old software. So the analogy makes additional sense here given that it's likely adaptations on top of old adaptations that gave us this illness. Genetic and epigenetic changes that allowed more humans to survive some diseases, at the cost of future problems. We...
  6. rvallee

    Maeve Boothby O'Neill - articles about her life, death and inquest

    They guarantee an outcome, then point at the outcome they created to say "see, we were right". Which is a bit like "predicting" what a person will say next, because you wrote their speech. It may seem clever without context, but in context it's just ridiculous. But it's out of ideological...
  7. rvallee

    NHS Sussex Community NHS Foundation trust: Myalgic Encephalomyelitis (ME) and Chronic Fatigue Service (CFS)

    The woowoo meter is off the charts here. Professional skeptics love it. Make it make sense. Please make the world start to make sense because holy crap this is bad.
  8. rvallee

    Bias due to a lack of blinding: a discussion

    IIRC, the FDA has approved a number of apps like the CBT for IBS one from Mahana. On the basis of the very format of evidence they reject here. I don't know on what basis the burden of evidence must be different. It truly makes zero sense. If anything, it should be even higher given that there...
  9. rvallee

    Long Covid Exercise programme by Norwegian physiotherapist Marianne Svanevik

    Amazing. Just a pure grift industry. And this stuff is available for free. Medicine is truly the biggest single producer of pseudoscience in the world. What a time to be alive.
  10. rvallee

    Review Long COVID science, research and policy, 2024, Al-Aly, Davis, McCorkell, Iwasaki, Topol+

    Maybe I got it wrong but I think this is misinterpreted, that it's 400M who had, at some point, Long Covid, most of which have and/or will recover, not 400M right now. The important takeaway is that infections are bad for health. Even mild ones. They all carry some risk. But the fashionable...
  11. rvallee

    Prevalence, risk factors and characterisation of individuals with long COVID […] in over 1.5 million COVID cases in England, 2024, Wang+

    There is this overarching problem here where clinicians mainly focus on symptoms that can be treated, which leaves behind symptoms that can't, which makes them under-recorded, which makes it impossible to develop treatments, which makes them less focused on, which makes them less recorded, and...
  12. rvallee

    Prevalence, risk factors and characterisation of individuals with long COVID […] in over 1.5 million COVID cases in England, 2024, Wang+

    It's not, but whatever. This is a pretty strong deviation from other studies in many aspects, but it looks mainly because of what they choose to look for. 4.5 years and the research is still so damn weak. You can find spicier homeopathic water than this.
  13. rvallee

    Reflections on the CODES trial for adults with dissociative seizures: what we found and considerations for future studies 2024 Stone, Carson, Chalder+

    It's only going to get worse. This stuff has been going on for decades and has long passed the limits of what is reasonable. All that's left is unreasonable, and worse than that. They have nothing but now they've had decades to put up, have done full loops around many times over. Of course they...
  14. rvallee

    News from Germany

    Worth preserving IMO. Some may have heard of this Kleinschnitz dude, who has serious behavior issues over Long Covid. Kind of a German Wessely in the sense that he has had a big voice in Germany, but with the diplomatic chops of a tomato. Very unhinged behavior. I don't know what it takes for...
  15. rvallee

    Maeve Boothby O'Neill - articles about her life, death and inquest

    Yup. It's thoughts and prayers that things could change, from the people who could change things but decided against it. Always rings completely hollow to me. A lot like politicians who speak out after they leave office, about things they could have done something while in office. Funny how...
  16. rvallee

    How do you recover from the trauma of systemic disbelief?

    I don't think I'll ever be able to fully trust anyone again. I don't really think of it as trauma, just as an adaptation to lived experience, a "fool me twice..." thing. I have seen how institutions deserve no trust, how they fail people in absurd ways. How easily people will screw others...
  17. rvallee

    Review Long COVID science, research and policy, 2024, Al-Aly, Davis, McCorkell, Iwasaki, Topol+

    Not sure why you're saying that. Economics is the only consideration in most matters of health care and public health. It's everything. Moral issues, doing the right thing, "helping people" is the bunch of hot air. Economics isn't just dollars and financial markets. It's resources. People are...
  18. rvallee

    Review Long COVID science, research and policy, 2024, Al-Aly, Davis, McCorkell, Iwasaki, Topol+

    According to comments from the authors, the near absence of ME/CFS was due to editorial demands. I don't know what it says about medical journals that they so commonly engage in cover-ups of basic information relevant to the paper they want to publish, but my surprise level is exactly 0. The...
  19. rvallee

    United Kingdom: Sussex & Kent ME/CFS Society News

    It's really a constant in all of this that those responsible for this disaster never feel responsible for anything. They have endless capacity to blame the people they failed for their own failures. Or general vibes. Or even completely fake delusional concepts. In large part because being...
  20. rvallee

    Maeve Boothby O'Neill - articles about her life, death and inquest

    It's difficult to degrade services based on generic factors, such as "we don't know if the patient is exaggerating their illness / if this is a functional disorder", without degrading it for everyone. Almost impossible, even. This is the inevitable outcome of this rotten ideology. It makes all...
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