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  1. rvallee

    Anomalies in the review process and interpretation of the evidence in the NICE guideline for (CFS & ME), 2023, White et al

    About exactly what was going through my head reading the comment above. They are using basic arithmetic on numbers that aren't even natural. Where they do the equivalent of 1+1+1+1+1=5, but each number representing 1 doesn't have a fixed value of 1 in a valid number system. This way of doing...
  2. rvallee

    Comparison of [CBT] versus activity management, both delivered remotely, to treat paediatric [CFS/ME]: the UK FITNET-NHS RCT 2024 Metcalfe et al

    So, entirely consistent with no actual difference in condition, but a difference in how that condition is reported. As was expected of 'treatments' that consist of telling people to do just that. Congratulations, you just re-invented a very expensive way of having people slightly distort their...
  3. rvallee

    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    The feeling poisoned bit, in itself, not just related to drinking alcohol, is hard to reconcile because of slight variations between people and how we experience reality. We are basically all trying to describe a color that we can all see but without any reference point as to what other people...
  4. rvallee

    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    It took restraint not to make it! Especially with that one comment about having to experiment with it. You know, for science!
  5. rvallee

    The Concept of ME/CFS, 2024, Edwards

    Yes, that's a bit overemphasized. I only recently started taking naps (mostly meditation but whatever) during the day. Even at my worst in recent years I would otherwise never lie flat at all during the day. I wouldn't do much during the day but it doesn't make a big difference overall, I...
  6. rvallee

    The Concept of ME/CFS, 2024, Edwards

    I think this is as good as it gets. Which is really sad, all things considered, since this was basically all known decades ago. Not put together, but it was known, in bits and pieces. It's just hard to see how it could come about until social media made the kind of discussions we have here...
  7. rvallee

    NHS England web pages on ME/CFS

    The same way as not spending money is not a treatment for poverty. This shouldn't be hard to understand. It's literally easy to understand. But lots of people struggle with both propositions, with plenty who even think that not helping poor people is the better option. It's the same underlying...
  8. rvallee

    Postural orthostatic tachycardia syndrome and other common autonomic disorders are not functional neurologic disorders, 2024, Blitshteyn

    I still haven't seen that actually supports the existence of any functional anything that isn't a simple "we don't know yet, and therefore assume there is nothing to know". It's every bit as bad as the evidence for the fictional behavioral model of chronic fatigue. The illnesses are real, the...
  9. rvallee

    Review Sport and exercise therapy for burnout and fatigue – a narrative review 2024 Gerland and Baumann

    This field of research can really be summed up as: "we've got a lot of theories but not a lot of data". This paper does nothing to improve on it. Right below this line is the classic diagram with a loop of thoughts and behaviors of self-reinforcing fatigue. Because an infinite loop as a symbol...
  10. rvallee

    Review Systematic review of chronic fatigue syndrome treatment methodology, 2024, López Barbeta

    I don't understand using the terminology of "systematic review" when most of the studies are excluded. This is anything but systematic, there have been far more than 17 trials, even since 2011, obviously none of which are controlled and most of them are poorly randomized, suffer from huge...
  11. rvallee

    News from The Netherlands

    'Invisible'. Covered up. Disbelieved. Denied to exist until it explodes so much it can't be fully ignored. Not really the same thing. The people who should be aware of this literally refuse to record it, usually don't recognize it when they see it, and talk nonsense about it most of the time...
  12. rvallee

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    There's also the possibility that it was a lie all along, was planned this way. Garner's stories have enough holes and oddities that it is a possibility. It sure fits the kind of tactics psychosomatic ideologues are willing to do. I normally don't go there, have not for anyone else, but there...
  13. rvallee

    Pilot study of a parent-based intervention for functional somatic symptoms in children 2024 Etkin et al

    Looking at the interventions, this seems to make some sense in terms of managing behavioral problems. Possibly, although this is all so generic that any LLM could do at least as good. But to think this can treat symptoms of illness is seriously delusional. And as usual the data are awful and do...
  14. rvallee

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    I mentioned this in another thread so won't rehash the whole thing. But from what I see in comments on social media of people being gaslighted with "mind-body" BS is that, while some accept it, the vast majority don't just reject it, they know very well they are being told a complete bunch of...
  15. rvallee

    News from Aotearoa/New Zealand and the Pacific Islands

    And considering that it's probably above average. :arghh:
  16. rvallee

    The UK Covid Inquiry - 2023 onward

    I'm surprised there hasn't been more posts about the inquiry because I keep seeing clips popping up and the discussions are really illuminating. The questions are often very good. The answers are generally awful. There is a lot of discussion of Long Covid, the lack of preparedness, lack of...
  17. rvallee

    Editorial: Reconsidering Persistent Somatic Symptoms: A Transdiagnostic and Transsymptomatic Approach 2024 Löwe et al

    So, the very same stuff that has been asserted for decades and used in real life clinical practice on millions, to widespread failure. Here it's just a modest proposal. "Exploring" the idea. Anyway, has anyone tried handing the richest people in society huge tax cuts and fiscal loopholes, see if...
  18. rvallee

    Pilot study of a parent-based intervention for functional somatic symptoms in children 2024 Etkin et al

    I can't say for children, they don't tend to write on patient forums, but from reading tens of thousands of comments going back 4.5 years of Long Covid about having their illness and symptoms being psychologized, they all appreciate when health-care professionals instead simply admit that they...
  19. rvallee

    Alcohol Intolerance poll. Please do the poll even if your answer is no.

    From testimonies of this in the LC community, which are far more common than in the ME community, I get the impression that it is more associated to POTS and dysautonomia, as well as MCAS, than ME/CFS. With the overlap between those, and how those overlaps fluctuate, it's hard to tell. However I...
  20. rvallee

    Salt

    And hence continues the problem of studies that contradict each other, leading rational people to simply tune out. Good grief what a mess. No wonder people go to shady social media sources and Youtube rabbit holes that reinforce their beliefs. If authoritative sources are so confused, might as...
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