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  1. rvallee

    UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

    As best as I can tell, this "gold standard" trope simply means EBM. Which, yeah, basically means "plastic-painted gold tchotchke" than actual gold-plated. So much marketing and hype in this profession. They take the absolute least reliable, most biased and ineffective, methodology known and call...
  2. rvallee

    ME Awareness Day / Week / Month, May 2023

    Hopefully this is the year long haulers participate with the full understanding that they are stuck in the same cell with us. It's been a massive disappointment how little support there has been. And not just for us, those who recover from LC all seem to move and forget all about it. I thought...
  3. rvallee

    Twist of fate A physician-scientist has probed Parkinson’s disease for more than 30 years. Now, he has it

    That's not ironic. Irony would have been if he had been somehow denying it, or had "researched" from, say, a BPS perspective. Now that's ironic. This is just probability.
  4. rvallee

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

    Exactly how much BS is there in medicine? If they can go ahead with this stuff, there's basically no limit to what they'll accept. There's zero concern with validity here, the "disturbances in neurophysiologic regulation" is the new "chemical imbalance" and the rest is just random speculation...
  5. rvallee

    ME Awareness Day / Week / Month, May 2023

    Damn inflation, look what little $5M per year buys you these days.
  6. rvallee

    'I'm still here, I'm alive and breathing': The experience of Black Americans with long COVID 2023 Bergmans et al

    I don't know how else to interpret that, this is what integrative therapies mean as far as I know. This is not how to care for those patients, in fact this is offered in response to lack of actual care while not recognizing what the lack of care is even about. I'm just weird like that but...
  7. rvallee

    Chapter 1 - Fads and Fallacies in Science, Medicine, and Psychology Published online by Cambridge University Press: 16 March 2023

    There's something unique about reading medical philosophy, it's like a peer into the past, pre-science, even pre-expertise. They're just old ideas without any substance throwing rocks from a glass tower while screaming "I'M THE KING OF THE WORLD!". Freud himself would find nothing...
  8. rvallee

    'I'm still here, I'm alive and breathing': The experience of Black Americans with long COVID 2023 Bergmans et al

    Yes. I'm not sure I understand how this relates, some random psychotherapy is obviously not a solution to any of those problems. It's in fact extremely insulting, given that this is the current failed standard.
  9. rvallee

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

    More accurate to say that they are fighting against us. And reality. But yeah. Bonkers at a level that is completely incompatible with professionals.
  10. rvallee

    Perceived Cognitive Deficits in Patients With Symptomatic SARS-CoV-2 and Their Association With Post–COVID-19 Condition, 2023, Liu et al

    Honestly it's getting easy to see why medicine has made zero progress in diseases like Alzheimer's. Recent news of such progress aside, let's see if it even holds up. You'd think that they could take disabling cognitive impairment like this seriously, but wow would that be a wrong assumption...
  11. rvallee

    Long Covid in the media and social media 2023

    How are they so bad at this? It's the near perfection of this incompetence that is infuriating. Just so completely out of their depth that they can't even see that they are failing miserably. And just the same way every damn time. They don't know, so they don't want to know. I've never seen...
  12. rvallee

    'I'm still here, I'm alive and breathing': The experience of Black Americans with long COVID 2023 Bergmans et al

    It's honestly hard to imagine any group of people who have listened to so much from so many people and heard so little. Even by complete chance it's impossible to get so many things wrong, they hear what they want to hear and nothing else. As if they have no concept of illness or disability...
  13. rvallee

    US News.com :A Patient’s Guide to Chronic Fatigue Syndrome

    Yes, totally was the medical community that realized that. Sure. Why not? It's not as if they're still almost in universal denial after 3 years and we have been screaming about this from the start. Who cares about what's true? Let's just go with that feels true. It's been 3 years. To hell with...
  14. rvallee

    Long Covid in the media and social media 2023

    Actually, this annoys me a lot. Angers me, even. Because to be honest here: It literally does the opposite, because I know they're lying. And I see nothing happening. It has nothing to do with stress, the only reason people go see professionals is because they expect them to do...
  15. rvallee

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

    Oh for sure they're stealing money from a purpose and using it for themselves. Zero question about that. The fact that Rosmalen is a ME denier is a feature not a bug. The problem is that most of medicine is OK with this, so no one in the system will care. In their minds it's as if they took...
  16. rvallee

    Journo found Uk cfs clinics urged to manipulate figures to keep funding

    It's also obvious that they can't report real numbers, which is the same as manipulating figures. It's still a lie even if they believe it. If they did report real data, they couldn't also do the marketing reporting where they pretend, based on vague figures, to do anything. Their data are...
  17. rvallee

    News from Scandinavia

    Obviously not, it's doubtful that the real numbers paid are even 10% of this, not even sure about 1%. The whole point of this construct is to deny those costs. But it's silly to only count direct healthcare expenses, and that is the real problem. As otherwise simply denying medical care is the...
  18. rvallee

    Long Covid in the media and social media 2023

    Same old same old. So it's looking more and more like the most likely explanation is the one that will see the fiercest defiance. Medicine has huge hang-ups about any combination of chronic and an infectious pathogen, it's considered a truism that this is not a thing, they can't handle this...
  19. rvallee

    Molecular mechanisms of stress-induced reactivation in mumps virus condensates, 2023, Xiaojie Zhang et al

    As best as I can tell, this hypothesis is mostly brushed off because there is basically nothing we can do about it. No lifestyle changes can change the fact that we regularly get exposed with stuff that can cause health issues. And it's not just pathogens, so many toxins, metals, now plastics...
  20. rvallee

    Join the Research Momentum with OMF’s StudyME

    Yeah, and I seem to remember it was supposed to expand beyond, but that never happened. I actually forgot about it. Haven't seen anything about it at all. Is it even active/used for something?
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