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  1. rvallee

    Effect of covid-19 vaccination on long covid: systematic review 2023 Byambasuren, Glasziou et al

    So, any conclusion would be meaningless, then. But let's conclude something anyway. GIGO: it's the EBM way. I guess that researching why and how that is is simply too hard? It's the only potentially useful research on this topic. Thanks to healthcare systems refusing to record any accurate...
  2. rvallee

    ‘The more outlandish the claim, the more likely it will stick in people’s minds’ – expert’s warning as fake news & cancer ‘cures’ put patients at risk

    Medical systems all over the world are gushing over having people yell STOP at their symptoms and many equally farcical claims, are in mass denial of a mass disability event they are pretty much responsible for creating, and answer to that with nonsensical gaslighting blaming all illness on...
  3. rvallee

    Reflections on Patient Engagement by Patient Partners: How it can go Wrong 2023 Richards, Poirier et al

    Always more relevant to have patient experience discussed by patients. But I disagree with the blameless approach. We're not dealing with toddlers and there is a whole lot of legitimate blame to go around. People rarely change their behavior by being asked nicely or through passive language...
  4. rvallee

    Noise cancelling devices for sleep?

    I bought the EarFun after the SoundCore because they had such raving reviews, featuring a newer chip technology, but frankly I can't tell much of a difference in most of my tests. I'd say whichever is cheaper will probably be good enough. The technology behind products like this tend to be...
  5. rvallee

    Cushing’s Disease Presenting with Functional Neurological (Conversion) Disorder 2023 Ashrafzadeh et al

    This is like a parody of bad science. The issue isn't with the ideologues anymore, it's with a system that has given up and enables and rewards pseudoscience. A profession so deep in crisis it can't even see it has problems at all, is in denial it can even do any wrong.
  6. rvallee

    Advice for difficulty texting on smartphone due to issues with fine motor skills/coordination

    Heh, I have the same problem. It's maddening to use those as I keep losing my train of thought. Depending on your computer, the better option could be to set it up to access your phone. This way you can send and receive texts on a PC. There is an app on Windows 11 called Phone link. Not sure on...
  7. rvallee

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

    Speaking of which, I saw a few people experimenting with ChatGPT to review some of their old papers. Lots of work ahead but it seemed to do better at the most basic stuff than the obscure, which is pretty much the opposite we see with humans, who can argue forcefully about semantic trivia while...
  8. rvallee

    Noise cancelling devices for sleep?

    I find that the ear plug types are better at noise cancelling, but at the cost of being a bit uncomfortable to wear over a long time. They're also easier to carry around as they easily fit in pockets, so much smaller, whereas the headphones have a much bigger case. The main issue I have with...
  9. rvallee

    Noise cancelling devices for sleep?

    I switch back-and-forth between Bose QuietComfort and either of the SoundCore P3 or EarFun 3, they're pretty equivalent. I can't handle having plugs in the ears all the time, so I keep the Bose around for that, especially lately with having to sleep with ear plugs. AirPods (just mentioned them...
  10. rvallee

    Noise cancelling devices for sleep?

    I've been experimenting a lot with this lately, and have had to sleep with plugs for a few weeks. For the day I can't find anything better than noise-cancelling ear plugs, the sort like AirPods. There are many cheaper options. Works wonderfully for the outside, much better than ear defenders...
  11. rvallee

    Long Covid in the media and social media 2023

    I've seen a few discussions of this on the bird app. It seems based on the WaPo study of health records showing that fewer people are seeking healthcare for LC. This seems to be the new excuse. Even though all patient testimony reveal an almost universal pattern of negligence and discrimination...
  12. rvallee

    Dynamic alterations in cerebral hemodynamics measured by portable near-infrared spectroscopy in orthostatic hypotension and intolerance, 2023

    The whole "I need to sit down if you want to talk to me" is also a big clue in this. It's already difficult for me to pay attention to a single thing, but when I'm standing, I'm only executing steps I planned in advance and I cannot have a conversation or figure anything out standing upright. I...
  13. rvallee

    Patient and public involvement within epidemiological studies of long COVID in the UK, 2023, Routen et al

    Why is this even a paper? They're merely describing some of what they did, none of which is impressive or useful. This is not worth writing a paper, it doesn't add new knowledge and there is far better content on this topic out there, written by patients. It's very generic and simply...
  14. rvallee

    Long Covid in the media and social media 2023

    I will preface this by saying that I've been reading most of what is published on the /r/covidlonghaulers forum from the start, and that for the first 2 years there was a lot of hope about getting help from medicine. It is not a doctor-bashing forum, and it's a wide-access forum, not some...
  15. rvallee

    Sociodemographic Factors, Nutritional Status, and Inflammatory Markers in Patients with POTS, 2023, Hanna Tufvesson et al

    Yup. All this means is that people fare worse if ill and already deprived. Which is universal and expected. But I'm sure we could see hundreds more of studies like this asking impertinent questions without anyone clueing on just how utterly useless all of this.
  16. rvallee

    Covid-19 vaccines and vaccinations

    Ah, yes, that's exactly what the recently heavily-fueled antivaccine movement needed: more fuel, tankers worth of it. No way this backfires. Clearly the way to approach a politicized issue is to politicize it further. The amount of censorship in healthcare is seriously absurd.
  17. rvallee

    USA: National Institutes of Health (NIH) intramural ME/CFS study

    Last we heard it would soon be ready to be sent for review. Which we heard a few times before, and could take a loooong time if the journals make it especially difficult. But that's what they tell us, and they rarely tell us the truth, so who knows?
  18. rvallee

    Clinician-rated outcomes of patients with functional neurological disorders treated in an outpatient clinic 2023 LaFrance Jr. et al

    They present this as something about outcomes but they pretty much end up trying to sell "NBT". What does it even have to do with outcomes? And why would clinician outcomes be any relevant when they don't even know enough to do that? Anyway, I tried looking for what NBT is and it seems they...
  19. rvallee

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

    The weird thing about this is it doesn't seem to understand that AI-generated content can, and should, be checked by humans. This is basically the same as not trusting mechanical calculators because human computers, it used to be a job title, are much better at it. It's not as if the content...
  20. rvallee

    Long Covid in the media and social media 2023

    From the Leana Wen op-ed: We are literally well over a year into "everyone get infected quickly so we get it over with" and on the tail end of constant minimizing and hopium. Almost all measures to reduce incidence have ceased and the permanent ones, like better ventilation, were resisted...
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