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  1. rvallee

    UniteToFight2024 Long Covid and ME/CFS conference, 15th and 16th May 2024

    Some negative responses on twitter to this announcement, some of it is legitimate, but this isn't like psychosomatic ideologues, I think it's better to involve people with significant influence than it is to shoo them away.
  2. rvallee

    Havana Syndrome: U.S. and Canadian diplomats targeted with possible weapon causing brain injury and neurological symptoms

    Geez that's high on the WTF!? index. Fear of retirement? Is there any imaginary fear they can't exploit? They've pretty much nearly covered all the types that can be imagined at this point. Especially when you consider that retirement is often the thing most soldiers look forward too. Not all...
  3. rvallee

    Sense about Science: Join our talks on science, scepticism and free speech (Garner et al)

    Also interesting that it usually comes from people who never have trouble finding a platform to speak from, about things that have always been a dominant force in society, awash in resources and institutional support. What they want is simply for people harmed by their actions and behaviors to...
  4. rvallee

    A body–brain circuit that regulates body inflammatory responses 2024 Jin et al

    I was under the impression that, maybe not with such high precision, this was already known. I guess what's significant is finding where and how? Or something like that. Or maybe the significance of vagus neurons in this process. Although I'm annoyed by the odd body-brain framing, last I...
  5. rvallee

    Measuring persistent somatic symptom related stigmatisation: Development of the Persistent Somatic Symptom Stigma scale for (HCPs), 2024, olde Hartman

    I didn't dig into it much, but at first glance it's actually not clueless. But seeing Jon Stone and how utterly bizarre it is that in response to this whole concept being discriminatory, their solution is to create yet another questionnaire to assess that discrimination, on some bases that are...
  6. rvallee

    Measuring persistent somatic symptom related stigmatisation: Development of the Persistent Somatic Symptom Stigma scale for (HCPs), 2024, olde Hartman

    Measuring persistent somatic symptom related stigmatisation: Development of the Persistent Somatic Symptom Stigma scale for healthcare professionals (PSSS-HCP) Brodie McGhie-Fraser, Caoimhe McLoughlin, Peter Lucassen, Aranka Ballering, Sandra van Dulmen, Evelien Brouwers, Jon Stone, Tim olde...
  7. rvallee

    News from France

    France, but also bits of Luxemburg. Basically an app to track symptoms, looks kind of similar to Visible. It seems to have been built to work with health care, but haven't looked into how well, in association with France's biggest Long Covid community, Après J20 (after day 20).
  8. rvallee

    2024: NIH National Institutes of Health - ME/CFS Symposium on Intramural study - 2 May

    Criticism between academics is basically the norm. This isn't kindergarten, spit will fly and tempers will flare, this is all normal. In fact finding weirdly positive collegiality is basically a sign that things are, let's go with fucky. I think that what they're not used to is laypeople giving...
  9. rvallee

    2024: NIH National Institutes of Health - ME/CFS Symposium on Intramural study - 2 May

    Don't know which way he meant it, but I'd say that I fully agree with the more reasonable interpretation that we need better advocates within the medical profession and the academic community. We need more of them, and better ones. Which Long Covid has given us, but not nearly enough to overturn...
  10. rvallee

    2024: NIH National Institutes of Health - ME/CFS Symposium on Intramural study - 2 May

    That is really impossible to accept. By definition a healthy volunteer cannot have POTS. POTS is rather rare, it's actually hard to find people with POTS, although mostly because of systemic opposition to its existence, but also because of how ridiculously unlikely it is that someone with POTS...
  11. rvallee

    UK Parliament: Westminster Hall debate on ME/CFS, Wednesday 1st May 2024, 16.30 - 17.30

    Hard to say whether it will make any difference, but having it all on legislative record, again, will matter in the long term. Once the lie can no longer be maintained and people start looking at why and how it happened, it will not be possible for anyone involved to say that they didn't know...
  12. rvallee

    Brian Walitt and his role leading ME/CFS research at the USA NIH

    I still can't believe that the alternative medicine industry hasn't yet jumped enthusiastically on this. They can literally keep everything else the same, simply swap a few terms and voilà, they're now cutting edge behavioral treatment techniques harnessing the power of the placebo, the magical...
  13. rvallee

    Long-Term Effect of a Tablet-Based [CBT] Group Intervention on Step Count, Fatigue, Self-Efficacy, and [QoL] in Older Adults With Arthritis 2024 Fiske

    So simple that even a toddler can do it. Are you not smarter than a toddler?! And they genuinely seem shocked that we get offended at being treated like we're too stupid to figure stuff like this. I kind of glossed over the "requires minimal professional guidance" and it's even worse when you...
  14. rvallee

    Economist Impact - An incomplete picture: understanding the burden of long Covid

    All wishcare, you can't treat symptoms when you don't know how to treat symptoms. Having multidisciplinary teams going through ritual motions doesn't affect that. There has been nothing preventing anyone from doing most of this competently. There is still zero examination as to why this is being...
  15. rvallee

    Long-Term Effect of a Tablet-Based [CBT] Group Intervention on Step Count, Fatigue, Self-Efficacy, and [QoL] in Older Adults With Arthritis 2024 Fiske

    About what would be expected of any random alternative medicine program coaching people to think positively, then asking the participants how they think. You could get better results out of getting people who drink their own pee for health reasons, if you wanted to. Assessment of fatigue and...
  16. rvallee

    Trial Report Functional Limitations and Exercise Intolerance in Patients With Post-COVID Condition A Randomized Crossover Clinical Trial, 2024, Tryfonos et al

    They don't understand the risk, though. Or simply ignore it. Or dismiss it. Either way, they can't do a reward/risk evaluation without knowing the risk, which here in the worst case is lifelong total disability. It's like dividing by zero, it's invalid. That risk is simply rejected, even though...
  17. rvallee

    Sense about Science: Join our talks on science, scepticism and free speech (Garner et al)

    It's always projection with these people. Just absurd level of projection and complete lack of self-awareness.
  18. rvallee

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    Lack of access really undersells the problem. Living in a very remote place where no specialists practice is lack of access. This is systemic denial of basic medical care. On purpose. Aware of the consequences. Defiant over a huge number of reports and studies showing the devastating...
  19. rvallee

    Guided graded exercise self-help plus specialist medical care versus specialist medical care alone for CFS (GETSET), 2017, Clark et al.

    Notably, this is pretty much the basis of homeopathy: a small dose of ill cures the illness. The 'theory' makes zero difference, it's clearly nonsense either way. But yeah the general idea of effort perception is nothing new, psychosomatic ideology has only had a single new idea in the last...
  20. rvallee

    RNZCGP GoodFellow Unit MedCases CPD Sept 2023: Chronic fatigue syndrome/myalgic encephalomyelitis

    How are people supposed to trust the credibility of medicine when they swallow stuff like this? Especially this thoroughly, it's basically an advertisement for it, full endorsement rarely just quotes straight from the marketing brochure this much because it sounds too forced and unnatural...
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