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  1. rvallee

    USA: NIH National Institutes of Health news - latest ME/CFS webinar 14 Jan 2025

    Uh, this is actually a pretty good roster. Still massively underperforming on the transparency side, however. This business-as-usual of doing everything in secret is really not working out. We only ever hear about small bits after they happen, and barely at that. There's really just no...
  2. rvallee

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

    I can't even think of a way this is actually legitimate. All they're doing is basically throwing the ball elsewhere so that no one has to account for anything. This is incredibly cowardice and dereliction of duty. It's really hard to put into calm words how much anger is deserved at Cochrane...
  3. rvallee

    The Netherlands - €28.5 million ME/CFS research program - ZonMW funding awards announced April 2023

    It could frankly pretty much pick up a high % of random people, the questions are so ambiguous and leading, can be interpreted in so many ways.
  4. rvallee

    Long Covid in the media and social media 2023

    Honest talk, if that can happen so easily, maybe most of that progress was largely an illusion? Maybe some questionnaire effect at the right place? Hopium is not a viable strategy. Never will be.
  5. rvallee

    OpenAi's new ChatGPT

    I wish I could say that it's shocking that AIs are massively overperforming human doctors at empathy, but I pretty much expected it to be like this. It's basically like a mirror of each other. This is the difference that learning straight from those with lived experience does, removing the...
  6. rvallee

    Self-reported quantity and quality of sleep in children and adolescents with a chronic condition compared to healthy controls 2023 Biemans et al

    Oh! Oh! I know the answer to that one: because it is. It's not as if there's even another possible explanation here. Of course the question remains why, likely having to do with, you know, the illness, but obviously they are reporting that because it is. Wow this academia thing is actually...
  7. rvallee

    Famous people diagnosed with neurological diseases

    This is what it means for MS to still be dismissed as psychosomatic. It doesn't matter if it doesn't apply much to diagnosed cases, it was always about misdiagnosis, about being gaslit, sometimes for years, before a diagnosis, if it doesn't make it impossible. This hasn't changed at all, for...
  8. rvallee

    VACCELERATE WEBINAR APRIL 26 2023: Clinical Trials on Chronic Fatigue and Post-COVID Syndrome

    A 150+ years infant, though. Primitive, for sure, but when you had over a century to do something, this isn't a justifiable framing. This excuse has become a complete farce at this point.
  9. rvallee

    European Research Network to Improve Diagnosis, Treatment and Health Care for Patients with Persistent Somatic Symptoms (EURONET-SOMA)

    Of course. So I guess this is a political thing since they never deviate from doing the same stuff over and over again, it's not as if this will change any of this, they couldn't possibly align more than they do already, since they're all doing the same thing over and over again anyway. As in...
  10. rvallee

    Long Covid in the media and social media 2023

    Ugh, FFS. After failing millions, the medical industry is literally profiteering off their own failure.
  11. rvallee

    USA: The RECOVER Initiative - Long Covid research

    That panel was a mess, and that Lewis dude has no business being involved in this, a blind lecturing the only people around with 2 working eyes. They don't have a freaking clue what they're even doing over there. Are they even aware that most patients who were given some treatment were given...
  12. rvallee

    Long Covid in the media and social media 2023

    And in large part because of the refusal to properly record reality, which is fraudulent distortion as it creates the impression that the problem is far less significant than it is, when support and resources are always based on that record. It's a loop as fraudulent as a police district that...
  13. rvallee

    Framework for systematic reviews on psychological risk factors for persistent somatic symptoms & related syndromes & disorders (PSY-PSS) 2023 Hüsing

    Hell, they even admit that they are biased and only looking to confirm. This is not science! It's completely excessive bias and it's not even a secret that it's not a serious process. It "should be" predictive, even though after decades and thousands of experiments they never managed any of...
  14. rvallee

    Framework for systematic reviews on psychological risk factors for persistent somatic symptoms & related syndromes & disorders (PSY-PSS) 2023 Hüsing

    No it won't. It's literally the same as always. But that's the "framework" they operate on: no one cares, just repeat the same stuff over and over again. As they say, this is a belief system. It even features the defining characteristic pattern of doubling down on beliefs when they are...
  15. rvallee

    Long Covid in the media and social media 2023

    It's really hard to understand how so many people, actual experts, listened to and read hundreds of such testimonies, presumably, and genuinely could not recognize any of the obvious patterns. This has been recorded for decades, all so much alike, all impossible to miss. And yet it was not just...
  16. rvallee

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

    Gonna have to find who polices the police first. Then maybe who polices the police who polices the police. Then eventually the turtle in charge, or something.
  17. rvallee

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

    What a joke organization. They talk about listening, but never actually listen. It's all empty political slogans, hollow words that promote the idea of an organization that has nothing to do with what Cochrane actually is. Strongly reminds of populist politics, using voters as props on a stage...
  18. rvallee

    Associations between daily routines and social support among women with chronic fatigue syndrome 2023 Rosenburg et al

    Academia really needs to get serious about useless research like this. This foolish nonsense is a complete waste of public funds and serves absolutely no purpose whatsoever. Bits of intelligence without a single bit of wisdom, it's like they hear words they don't understand and find nothing...
  19. rvallee

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

    Damn. How did such a rotten organization ever become the standard bearer of medical evidence? Because wow does it reveal a lot. They truly don't give a single frack about their mission, it's all about personal self-advancement. Absolutely zero respect for patients or any of their stated...
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