Search results

  1. rvallee

    What stops you getting involved in Patient and Public Participation in research?

    I don't think I could contribute much in my state, but even if it were well-adapted I have never once come across any such opportunity in my country. I don't think there's any research going on here aside from Moreau's, and he doesn't seem to do such involvement. Canada is pretty much a complete...
  2. rvallee

    Side-effect expectations are associated with disability, physical fitness, and somatic symptoms 3 months after post-COVID... 2024 Salzmann et al

    So. Rehabilitation didn't work. Therefore they need more rehabilitation. And it still didn't work. Therefore they need even more rehabilitation. You could get smarter reasoning out of brain damage. Not out of people who suffered brain damage but the actual damaged brain itself. Any random...
  3. rvallee

    United Kingdom: ME Research UK (MERUK) News

    I'm really tired of reading articles like this. All they do is spread false hope that lead to people feeling more despair. Nothing's changed and nothing's changing either. Even LC is not recognized by the medical profession. No matter how much the evidence grows, the stubborn denial just grows...
  4. rvallee

    Side-effect expectations are associated with disability, physical fitness, and somatic symptoms 3 months after post-COVID... 2024 Salzmann et al

    Good grief this is dumb. Zero attempt at making sense of the world out there. They're completely dominated by their own thoughts.
  5. rvallee

    Sweden: Socialstyrelsen's new national guidelines for "Postcovid and other related conditions and syndromes" including ME/CFS

    There's still not a damn bit of evidence that exercise is an effective treatment for any part or whole of this condition, and yet they're still at the stage where they defend it like it's the last bottle of water in a very large desert. No one has any idea why they're even pushing this. They...
  6. rvallee

    How stigma unfolds for patients with Functional Neurological Disorder 2024 McLoughlin, Carson, Stone et al

    This twitter thread will always represent to me how little they care about patients. Even when they're told in very simple terms about the consequences of what they do, they just refuse to accept it. Because it never makes a difference to them. We're not real to them, our lives don't matter...
  7. rvallee

    German late night comedian Jan Böhmermann covered ME/CFS and Long COVID

    Mentioned in the transcript is some dude named Kleinschnitz, a German neurologist who has pretty much taken the mantle of nastiest psychosomatizers of all. He reminds me of Sharpe but with even worse people skills and a 7-8 drink minimum. Some of the things he said genuinely belongs being...
  8. rvallee

    Individually tailored exercise in patients with postural orthostatic tachycardia syndrome related to post-COVID-19 condition... 2024 Svensson et al

    A feasibility trial for the treatment that has been dominant for decades and millions have been subjected to, to widespread and acknowledged failure (while at the same time most seem to pretend that it works, somehow). It's been the target of fanatical obsession and controversy literally for...
  9. rvallee

    Can Taurine Supplements Treat Long COVID?

    One supplement I tried in the last year. Discovered it's a pretty good sleeping pill, although cannabis is a lot better at it. If I take it usually 15 minutes later I'm sound asleep. Weird stuff.
  10. rvallee

    Post-Acute Sequelae of COVID (PASC or Long COVID): An Evidenced-based Approach, 2024, Griffin

    Sums up the controversy pretty well. Lots of charlatans are taking advantage of patients here, and the worst of them have MDs and medical licenses. And a whole lot of cowards allowing them to dominate the issue despite having delivered absolute fuck all in decades. That's a unique challenge...
  11. rvallee

    Toward the emancipation of “medically unexplained” and energy-limiting conditions..., 2024, Hunt

    Reading the quote above, I do see a huge overlap in misogynistic language from the dark sewers of the bro Internet about how everything they do about women is about 'protecting' them. It definitely shares the same roots of "I know what's best for you and will do everything in my power to control...
  12. rvallee

    Challenges in Receiving Care for Long COVID: A Qualitative Interview Study Among Primary Care Patients About ..., 2024, Gardner et al

    So, big picture: they're not doing their job, they might try thinking about doing part of their job, but no one will make them. So, less than is expected of a teenager at an unsupervised summer job. You might think about raising the bar many, many steps further. This should be neutral. Like...
  13. rvallee

    Sweden: Socialstyrelsen's new national guidelines for "Postcovid and other related conditions and syndromes" including ME/CFS

    That's how I understood it. I don't see how it matters to be followed by someone when they don't know what to do, know less than the patients themselves, when nothing they do hooks back to research and no one makes any of use of that data. It's self-management until then. The rest of the...
  14. rvallee

    Diagnosing, Managing, and Studying Long-COVID Syndromes in Children & Adolescents in Rural and Underserved Populations, 2024, Weakley and Snowden

    LOL. LMAO, even. Randomized trials. Cutting edge therapy. These people are hi-la-rious. As if there is even such a thing available to the rich urban folks. Good grief it's as if half of health care is purely aspirational without any concern about validity whatsoever. One of the rare instances...
  15. rvallee

    Managing fatigue transdiagnostically: a qualitative study among people with chronic conditions on optimizing daily activity, 2024, Hettinga et al

    They're trying to do something that could be described as active convalescence, taking the ideas of convalescence but making them worse by framing them as rehabilitative and as a solution to the problem. Still stuck on some belief that the right coaching and encouragement will do the trick...
  16. rvallee

    Internal Tremors: Adding to the List of Long COVID Symptoms

    That's one of the things my ME started with. That and much more and they were sometimes very visible, feel like shivering from a fever, but mostly at a lower "buzzing" level and remained for years. Very commonly reported from the start in LC. Can be found all over the place on the LC forums...
  17. rvallee

    Boom and bust, another ME/CFS myth? - ME/CFS Skeptic blog

    Well, I'm a bit of a 18' giant. I'm not 18'. Just a bit of it. I'm also a bit of a billionaire. A very tiny bit.
  18. rvallee

    Sweden: Socialstyrelsen's new national guidelines for "Postcovid and other related conditions and syndromes" including ME/CFS

    That's not what the report said, though. Those are the treatments it found in the literature, but it found that none of them show any efficacy and that the evidence base is deficient and so chaotically heterogeneous that even making comparisons is difficult. And all the claims from biased...
  19. rvallee

    United Kingdom: News from #There for ME

    LC advocacy is much more confrontational and direct, in contrast with the ME charities that have been muzzled by an effective demonization campaign leading them to adopt a "please may we have another" mindset. There is just much better reception to their message, even though it's the same...
Back
Top Bottom