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  1. rvallee

    AMA Journal of Ethics : The Importance of Listening in Treating Invisible Illness and Long-Haul COVID-19

    It's even a regular thing for him. He re-tweets quotes that literally apply to him being in the wrong, sometimes almost excessively so, in that they represent things he does all the time, that define his whole career. Still unsure whether he's Magoo level of clueless or if it's self-promotion...
  2. rvallee

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    I'm not at all sold on the BC007 thing, just from the assumption of how hard it is to find a treatment that works without understanding the pathology and how historically it never pans out for us, but apparently they did research some years ago with pwME and found the same (GPCR-AABS?)...
  3. rvallee

    AMA Journal of Ethics : The Importance of Listening in Treating Invisible Illness and Long-Haul COVID-19

    He literally re-tweeted a (n alleged, dunno if genuine) Feynman quote a few days ago that said something like the difference with scientists is that they accept when they're wrong. There are rocks out there with more self-awareness. Or maybe he is here and is simply completely shameless and...
  4. rvallee

    How ‘Long COVID’ Keeps Us Sick - Quanta

    1st step: whatever was done, do the opposite. When you manage 100% failure, it's very easy to do better, just flip everything around. But for that the failure must be acknowledged, so if it does happen, it will have to be imposed from the outside. Because right now medicine is doing all the same...
  5. rvallee

    Time to assume that health research is fraudulent until proven otherwise?, 2021, Smith

    Interesting article but ironic given the author's role with COPE, which whitewashed PACE, and Cochrane, given the organization's failure to deal with exactly this. Problem is that the people who make those statements only ever apply them to things they don't like, I would bet a good sum that the...
  6. rvallee

    Guided graded exercise self-help for chronic fatigue syndrome: Long term follow up & cost-effectiveness following the GETSET trial, 2021, Clark et al

    It will be so informative when we will be able to do studies of the participants in those trials to get the real story of what happened. Presently impossible to do, but a necessity to learn from this disaster.
  7. rvallee

    Trisha Greenhalgh on ME/CFS and Long Covid

    The timeline of events strongly suggests that once she understood that most of LC is basically whatever she believes MUS/CFS is, she completely lost interest as a medical matter, especially not relevant to her focus on general practice. I may be wrong, can't verify as she blocked me, but I have...
  8. rvallee

    News from France

    A planned national study, named COCOLATE, has not started yet because of funding woes, so a team is doing a study on what appears to be the immune response to vaccination. In Paris.
  9. rvallee

    News about Long Covid including its relationship to ME/CFS 2020 to 2021

    It turns out that this study was not funded, or may be delayed, or whatever. At least according to this. Because if you don't study a problem does it even exist? You can certainly say it doesn't, or it would have been studied.
  10. rvallee

    Lightning Process study in Norway - Given Ethics Approval February 2022

    Maybe already discussed but it seems there was a prior attempt to do this study in 2012. Or maybe this is the same attempt? https://www.dagensmedisin.no/artikler/2012/09/27/vil-bruke-ni-millioner-pa-omstridt-me-metode-/
  11. rvallee

    News from Canada

    Anyone know about this? https://thetyee.ca/News/2021/07/05/I-Should-Not-Have-To-Beg-For-My-Life/ Haven't heard of this. It's a good article otherwise, but the details are the same old we already know of: horrible and no one but us cares.
  12. rvallee

    Reversals in psychology, 2020, blog by argmin gravitas

    Simon Wessely summed it up this way, paraphrased: "the placebo is one of the most powerful interventions we have". They believe their effect is a placebo effect. They think the placebo effect is powerful and that our experience is a powerful nocebo. It's circular logic lacking any evidence but...
  13. rvallee

    CBT repackaged or a novel treatment? The Lightning Process compared with UK specialist medical care for paediatric [CFS], 2021, Anderson, Parker et al

    Odd comment coming from people who would leave those guidelines as is, in fact are trying their hardest behind the scenes to keep them as is. In fact they literally did, until they had to backtrack. And the updated draft actually blames them, though in the most passive way possible. But, again...
  14. rvallee

    Lightning Process study in Norway - Given Ethics Approval February 2022

    Straight up lying sure is one way to deal with criticism. You see those droids? They are not the droids you are looking for. And calling patients pointing out basic facts trolls. That's how you know Parker is now one of the gang. It's not as if any of this matters, people are allowed to lie...
  15. rvallee

    BPS attempts at psychologizing Long Covid

    Hey, isn't that a variation of "we have no evidence of complaints" when it is impossible to record complaints, justified by the lack of accepted complaints. Are they that dense? Or just that malicious? Surely they can't be so lacking in self-awareness to not understand that refusing to provide...
  16. rvallee

    Guided graded exercise self-help for chronic fatigue syndrome: Long term follow up & cost-effectiveness following the GETSET trial, 2021, Clark et al

    "I'm sorry I got caught" is the most pathetic there is but this doesn't explain the journal's inability to perform basic peer review and editing, why it was necessary to push them to do something that is expected to be part of their work to begin with. This is the "my dog ate my homework" of...
  17. rvallee

    2021 Pan-Europe ME Patient Survey (EMEA)

    Or RecoveryNorway being Streisand effect?
  18. rvallee

    Neuroimaging in Functional Neurological Disorder: State of the Field and Research Agenda, 2021, Perez, Carson, Edwards, Hallet, Stone et al

    When you put it this way... One dominant theme in the literature is how we reject it, they are endlessly frustrated that we are not gullible enough for it. So naturally, convincing physicians is far easier. When it comes to psychosomatics most are endlessly gullible, they accept every claim no...
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