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  1. rvallee

    Objective Proof of the Nocebo Effect?

    And meanwhile we're stuck with them but it's them who whine about being stuck with us even though we don't even want them around and they know it. Such an easy fix for this. But egos. Just freaking narcissistic egos. Also lots of legal liability but who's counting?
  2. rvallee

    WebMD: Without Guidelines, Docs Make Their Own Long COVID Protocols

    Ah, well, at the very least there is no confusing the fact that those guidelines have been deprecated, the message makes up the whole page. That's good. Which says either of two things: no one checked, or no one cares. The person who wrote this could not have possibly been mistaken about the...
  3. rvallee

    News from Australia

    Ridiculous.
  4. rvallee

    Identification of biopsychological trait markers in functional neurological disorders 2022 Weber, Aybek et al

    The fact that their own models are always circular thinking was the most giant tell ever. Still is. The conclusion is everything, the rest is just noise.
  5. rvallee

    Long Covid stigma: estimating burden and validating scale in a UK-based sample, 2022, Pantelic et al

    Remarkably, and predictably, this is being covered with zero reporting of how the discrimination (not stigma, this is discrimination) is the same for us, for the exact same reasons. I've seen an article mentioning other discriminated illnesses, still avoided mentioning us. It was a UK...
  6. rvallee

    Preprint: Research Letter: Association between long COVID symptoms and employment status 2022 Perlis et al

    Are there ever going to be actual breakdown studies? Every study so far is pure statistical analysis, there is no granularity to the data, they're all just pooled data compared to other pooled data. There is no tracking of individual data points, it's data without any depth. Even bigger studies...
  7. rvallee

    Identification of biopsychological trait markers in functional neurological disorders 2022 Weber, Aybek et al

    They really are trying to moneyball this, trying to fit the right combination of factors that support their conclusions. These people actually dismiss well-defined (if one bothers to learn them) entities as too vague, and yet their entire thing is: And it's caused by "stress", which is...
  8. rvallee

    A general thread on the PACE trial!

    IIRC they used the last answer submitted. Which is clearly making up data. This fact alone would normally be a fatal error in any serious professional setting. Inventing data is obviously not permitted in a serious process, in research it's blatant misconduct, even when it's a trivial amount...
  9. rvallee

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

    Complete radio silence and a fully secretive process make it impossible to know. I don't think anyone outside of us is aware of this. Even though it keeps getting cited, this is pretty niche. Maybe this is taken into account, doubtful though. It would make sense to emphasize it. I assume that...
  10. rvallee

    What is brain fog?, 2022, Smyth et al (incl. Alan Carson, Jon Stone)

    This is basically turning into a running gag, but leave it bad physicians to notice a common medical problem, smack in the middle of their "expertise" but they missed entirely nonetheless, and find a way to argue that it must be whimsical and about other stuff, therefore probably not medical. I...
  11. rvallee

    WebMD: Without Guidelines, Docs Make Their Own Long COVID Protocols

    It sure is true that they are widely available and have been used. They are essentially useless, but it sure is true that they have been used. All this stuff most patients can do easily. It's everything else they can't. Stop wasting professional resources on amateur stuff that nearly everyone...
  12. rvallee

    Long Covid in the media and social media 2022

    Decades and millions wasted on a psychosocial model have not come up with anything as relevant as this small nugget from someone who is new at this. Regardless of anything, all of their work combined has never managed to grasp the reality of chronic illness anywhere near close to this errant...
  13. rvallee

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

    Agreed. Frankly, Long Covid has essentially made this review irrelevant. Not just the update, the review itself. There is a brand new crop of identical(ly bad) studies and trials being done for LC, in addition to the move toward even more generic and vague fluff in the form of FND/MUS...
  14. rvallee

    Tevogen Bio to investigate T cell therapy in long Covid

    Whatever the real answer happens to be, if it's all about the T-cells it would make such an iconic moment of Wessely's "enough with the T-cells". Doubtful that any one thing is the whole answer, but this would be in the same vein as "bacteria can't possibly survive in the stomach" and peptic...
  15. rvallee

    Monitoring app - Visible - a platform "designed for any invisible illness that benefits from resting and pacing - including ME/CFS & Long Covid."

    So far I've seen mostly good comments. And lots of familiar and friendly professionals seem involved, like Todd Davenport and a few others I noticed. Looks positive so far.
  16. rvallee

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

    Some of this tweets trashing Cochrane or GET and a few private messages with other people have been shared on many of his tweets and to others praising it. He genuinely doesn't care because no one else seems to, there are no consequences. We've been showing how the claims of harassment have been...
  17. rvallee

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

    It's resonating especially poorly with long haulers. One pattern I noticed in the first year, whenever discussion of the overlap with ME came up, was the many people who said they didn't have much fatigue so it didn't make sense to them. Kind of familiar. It still pops from time to time with...
  18. rvallee

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

    Thank you Caroline. It's becoming increasingly clear that the entire EBM paradigm needs to end, it's nothing but politics behind the scenes and marketing in public. Taking the incident with the fraudulent papers that, when taken out, don't really change the outcome and how it doesn't bother...
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