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  1. rvallee

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Maybe I don't understand what protocol means here, but my understanding would be simply the basic plan for what the review would be. So that would be the blueprint to the building. After the blueprint is the whole construction, aka most of the work. We still don't even have a blueprint. The...
  2. rvallee

    UK: Action for ME: Media Guidelines for reporting on M.E.

    The first rule of editing: cut in half. The second rule of editing: cut in half again. Well, that's my rules but whatever. People have very limited attention span. Not because of some "modern life be soooo hard" but rather that there is just so much to do that people only give full attention...
  3. rvallee

    Long Covid in the media and social media 2023

    What even is "specified fatigue"? Clearly the existence of unspecified fatigue implies the existence of specified fatigue. I guess it just happens like that. Without a cause. Which is basically spiritualism. Everything has a cause. Even if they want it to mean psychological fatigue, all this...
  4. rvallee

    Long Covid in the media and social media 2023

    And add to that brain drain and loss of institutional memory. It doesn't even need to fully disable someone, mild brain fog is enough to bring someone from high performance to below average. Lots of companies depend on key workers. No one is irreplaceable but some people are very expensive to...
  5. rvallee

    Long Covid in the media and social media 2023

    The size and coverage of the LC awareness day have frankly been not much bigger than our May 12. Barely any media coverage. It's basically comparable to what we did, so the size of LC isn't that much bigger than the existing ME base. However while medicine is pretending this all brand new and...
  6. rvallee

    Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A philosophical investigation, 2021, Byrne (thesis)

    Philosophy is generous. Blathering is more like it. To be fair, a lot of philosophy is just blathering, but this is as blather as blather gets. Philosophy is the study of knowledge. Ain't no knowledge here.
  7. rvallee

    A Case Study of Successful Application of the Principles of ME/CFS Care to an Individual with Long COVID, 2023, Petracek, Rowe et al

    So, time. Ascribing any effect here is simply not valid. Even at 12 months it should take a huge amount of evidence to give credit to some intervention or another, otherwise this makes as much sense as giving credit to some dance ritual for having solved major flooding, years after it happened...
  8. rvallee

    Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: A philosophical investigation, 2021, Byrne (thesis)

    It actually shows that no one can tell the difference either way, and that the old distinction is about as scientific as the concept of race, created in a time of ignorance and with roots from the same tree of bigotry. It's also not even grounded in reality, instead in the flawed perception of a...
  9. rvallee

    GDF15 linked to maternal risk of nausea and vomiting during pregnancy 2023 Fejzo et al (hyperemesis gravidarum - morning sickness in pregnancy)

    The same pattern keeps holding up about everything psychosomatic: it's worse in context, and the more context you add the worst it gets. Everything about this ideology is disgusting. It has destroyed millions of lives. And it's massively popular, beloved even. What the hell is wrong with this...
  10. rvallee

    Functional somatic disorders, their subtypes, and their association with self-rated health in the German general population 2023 Sattel et al

    We have actually reached the stage where chatbots, we're not quite at AI yet, actually make more sense than this garbage. Even though they often don't make much sense. It's still better than this random pile of nonsense.
  11. rvallee

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    The most impactful thing would probably to loop in the long hauler advocates who understand the whole well enough to see how it affects them. Like the Patient-led group that sprung from the Body politic forum. We can scream in the echo chamber all we want, we have to break the walls and get...
  12. rvallee

    Long Covid in the media and social media 2023

    I'm noticing the same. Even locally, almost every mention in the media of LC only ever get bots and trolls in replies. It's a huge problem, and a direct consequence of public health's failure to tell the simple truth, even though it's what their playbook says.
  13. rvallee

    Long Covid in the media and social media 2023

    This is actually significant. People often forget that labor is a market. Wages go up and down based on supply and demand. When there are fewer people working, they have more negotiating power. They can move to another job if another company wants to poach them. They can go to their boss and ask...
  14. rvallee

    Coping strategies in patients with good outcome but chronic fatigue after aneurysmal subarachnoid hemorrhage 2023 Ghafaji et al

    Sounds a lot like the patients are lowering their expectations of what is normal and simply endure it. When you are used to 9/10 energy and now live with 2/10, even 4/10 is pretty damn sweet. Especially once you clearly notice that MDs don't have a clue about this and there's no point...
  15. rvallee

    Post-exertional malaise among people with long COVID compared to myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), 2023, Bateman et al

    Most studies don't ask, I think only patient-lead studies did, but in the few that did it was the most prevalent symptom or issue. Which really makes the studies that don't ask especially indicative of not paying one bit of attention to the world outside of textbooks and bureaucratic paperwork.
  16. rvallee

    Long Covid in the media and social media 2023

    The main takeaway from patient testimonies is how truly horrible the gaslighting and ignorance (feigned or legitimate) from doctors is, how non-responsive healthcare systems and how it adds insult to injury. And there's no treatment anyway. Meanwhile the CDC be like, "hey, talk to your doctors...
  17. rvallee

    News from Canada

    There many good things in there. And good people. From the looks of it, it's just the usual power struggles behind closed doors. Many efforts have failed this way, someone with a foot massive enough to sway everyone put it down and said "NO!", likely more than someone. It basically always goes...
  18. rvallee

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I've thought about the lack of whistleblowers in this and frankly the fact that there hasn't been a single one ever puts that possibility to rest. Not one. Not a single one. Not even a minor protest or concern. I think it just goes with the nature of the discipline, that only true believers get...
  19. rvallee

    UK: Social prescribing on the NHS (and possible implications for ME/CFS services)

    SCAM Bit on the nose. But really, there is zero difference between referring people to any of those alternative medicines and the BPS approach. Quackery is quackery. They equally lack evidence, and are equally boasted about as being effective by their respective professionals, using the loose...
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