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  1. rvallee

    Who Hijacked ME?

    Lots of different experiences, but I see just as often in LC forums people talking about having essentially disconnected emotions, not feeling anything anymore, not low mood, as in depression, but the absence of an emotional state, just as often as I see the opposite. Personally it's both...
  2. rvallee

    cognitive behavioural and personalised exercise interventions for fatigue in inflammatory rheumatic diseases (LIFT), 2022, Bachmair et al

    Since we're on the topic of renaming things, I would offer: Customized Rehabilitation Activation Protocol.
  3. rvallee

    cognitive behavioural and personalised exercise interventions for fatigue in inflammatory rheumatic diseases (LIFT), 2022, Bachmair et al

    At this point, it becomes legitimate to consider this level of obsession as a cognitive deficit. It's not normal to be so obsessed with something so mediocre. But the publishing industry and academia are to blame for this. That such blatant speculation, out of fuzzy maths that can literally...
  4. rvallee

    USA: Massachusetts ME/CFS & FM Association news

    Ironically, I keep seeing that the only doctors who even bother to help with Long Covid are functional doctors. So it may be useless and mostly quackery, but what does it say about medicine that so many people still find it more useful than medicine, because of all the gaslighting and lying...
  5. rvallee

    Functional Neurological Disorder (FND) - articles, social media and discussion

    Very fungible. It's like pocket sand. Someone pesters you to justify your reasoning? Throw pocket sand at their face, aim for the eyes. Problem isn't solved but question time is over.
  6. rvallee

    Factors associated with comorbid epilepsy in patients with psychogenic nonepileptic seizures: A large cohort study, 2022, Massot-Tarrús et al

    The fact that they can maintain the framing of psychogenic despite this is horrifying. The lines between medicine and religion are blurring more and more each day. Prior theological writings have to be respected because eminence. This again all points to immunological causes and mechanisms, but...
  7. rvallee

    Long Covid in the media and social media 2022

    I'm conflicted by this, because they are asking for the privilege to be the only people protected by this. I understand people can't be expected to think about the big picture while suffering, but the fact is that protection from illness and disability is a privilege, denied to many, and it...
  8. rvallee

    News from Doctors with ME

    Is Ryamar American? Because glass ceiling is a common term in North America that most people are aware of. No issues there. Actually the thing I find the least problematic in all this discussion, but maybe it's just an issue of cultural translation.
  9. rvallee

    ME/CFS services in the United Kingdom

    Unlikely without outside intervention ending this cycle of mediocrity. This nonsense is baked into the profession and they don't want to hear anything that contradicts their textbooks, even when the textbooks are clearly wrong. Medicine is broken in so many ways.
  10. rvallee

    Brain Fog Article in Law Society Gazette

    I think it's mostly executive processing and that it's not able to rely on existing memories. I get the same, I have to plan the evening before what and how, every single step, I'm going to prepare for lunch the next day. Doesn't matter how many times I have done a specific lunch, every single...
  11. rvallee

    News from Australia

  12. rvallee

    SureCan study: Survivors' Rehabilitation Evaluation after Cancer; 2018-2022+ Taylor, Chalder

    So if you train people about the humours, or astrology, or anything really, you can then conclude that you can do that. Good stuff. Powerful. The worst part is that there are hundreds of "studies" like this. Psychology makes many baseless affirmations, but somehow they still need to "test"...
  13. rvallee

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

    One thing I'm confused, or maybe angry, about is that so many thousands have gone through those programs recently, with endless opportunities to assess outcomes, with proper controls and methodology, far better than biased trials performed by ideologues. And yet it's not happening at all...
  14. rvallee

    Long COVID symptoms in SARS-CoV-2-positive children aged 0–14 years and matched controls in Denmark (LongCOVIDKidsDK):..., 2022, Kikkenborg Berg et al

    Somehow, the reliability of the data is not questioned. All it means is that those scores aren't reliable for much, amount to very fuzzy data, which is normal considering they can't control for anything, are simply too vague for this purpose. But where people want to see patterns, they will...
  15. rvallee

    Multi-centre classification of functional neurological disorders based on resting-state functional connectivity, 2022, Weber et al

    The thing about machine learning is that the system "learns" all the biases that are present in the data. So if you feed biased data that will make a pattern emerge where there is none, the neural network will "see" the patterns for the same reason if you swap pictures of dogs with cats in the...
  16. rvallee

    News from Doctors with ME

    It's a huge issue in technical professions I can tell you that. We had communication classes in our software engineering program and most, me included, thought it was a joke. It definitely isn't. Doesn't matter how much you know if you can't get that knowledge across to others.
  17. rvallee

    CPD Online College : What is ME?: scam

    It's definitely missing the righteous fury subset because although I am about 3% depressed and 0% anxious, I am 199% righteous fury at the raw destruction of millions of lives, and my own, and it's probably a good thing I am as physically capable as a potato because holy crap I'll just stop here.
  18. rvallee

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

    Oh, wow. I had completely forgotten this was "happening" at all. There have been tens, if not hundreds, of thousands of people with LC who have gone through exercise programs by now. Without a single trial of anything. Based on the evidence for ME. Even though the evidence is very low quality...
  19. rvallee

    Comprehensive Clinical Characterisation of Brain Fog in Adults Reporting Long COVID Symptoms, 2022, Jennings et al

    "Independent". When you study brain fog and haven't bothered learning the basics. Actual independent associations. Brain fog can be completely independent of those. Ugh. My early optimism that medicine would finally get around to understand chronic illness did not factor in a complete...
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