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  1. rvallee

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    To be able to say "we're not finished" when legitimate complaints are raised about putting saboteurs on the committee. Then it will be "well, selection is complete, nothing we can do". At least it's not strictly saboteurs, but they understand that we understand what they are doing and have...
  2. rvallee

    A 4-day mindfulness-based cognitive behavioural intervention program for CFS/ME. An open study, with one-year follow-up, 2018, Stubhaug et al

    Typical for this kind of studies and mostly because any truly random group would have some controls question the rationality of what the hell is this cult and how is anyone claiming this is serious scientific research?
  3. rvallee

    Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

    This is a good plan. The issue isn't with planning, we cannot work the plan (yet). If the capacity existed, this is roughly what would have been done already. We cannot provide an alternative to the news media because past disinformation has painted a perception of being toxic and unreliable...
  4. rvallee

    Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

    I've only seen suggestions that she may have been mislead. I have not seen anything that could be construed as calling he a liar or fantasist on this forum. I absolutely don't think she is either. She has a perspective. It is accurate on some points, less so on others. She seems to take at face...
  5. rvallee

    NICE guideline review: A list of appointees to the ME/CFS Guideline Committee has now been published

    Shorter NICE: shut up and take it. Alternatively: don't ask me, I just work here. Also don't ask anyone else, no one cares. But this justification of the committee not being complete meaning it cannot be questioned is straight up bizarre. It doesn't matter if a jury is not fully formed when it...
  6. rvallee

    NICE Annual Conference 2019: "Transforming care"

    When did the "gold standard" change from double-blinded placebo-controlled randomized trials to just randomized trials? It seems the gold standard has become diluted over time. I'm seeing far too much of this loosening of standards lately, seemingly to make it easier for the psychologisation of...
  7. rvallee

    'I’m just ill – respect me for who I am'

    Basically: you're not allowed to be happy, even for a moment. Also: you should do acceptance therapy, it will cure you. And I don't believe your "vague" diagnosis that can't be tested for so you definitely have the vaguest possible diagnosis that can't be tested for.
  8. rvallee

    Carol Monaghan granted a Backbench debate (UK Parliament) Thursday 24th January 2019

    Sure, just like Sharpe. Who keeps publishing despite claiming he has been chased out of town. Same with Crawley. Wessely was very much involved in PACE. From a certain distance, sure, but this was too important to his career. He's directly named as center leader in the TMG notes and trial...
  9. rvallee

    Carol Monaghan granted a Backbench debate (UK Parliament) Thursday 24th January 2019

    Possible, but the SMC's influence over the UK press means we should not expect much. Maybe this will be the tipping point where the SMC's role as PR representatives to Wesselly's work is too obvious to ignore. Any good journalist should expect that their own reputation will be hurt by continuing...
  10. rvallee

    Carol Monaghan granted a Backbench debate (UK Parliament) Thursday 24th January 2019

    It's his brain child, his crowning achievement. He pretends to maintain some distance and independence from it but he was very much involved in it. His involvement is probably much more significant than we already know. Not that we could show much or that it makes a difference, but he will be...
  11. rvallee

    An Appeal for Help with Llewellyn King's ME/CFS Alert videos

    I highly appreciate Llewellyn's tireless work but his videos are usually not shareable because the sound is barely audible and need some editing work. It's mentioned in the Youtube comments nearly every time and it's sad because the content itself is very good but the presentation means very few...
  12. rvallee

    Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

    Which is absurd on its face. 85 is still below average. This is implausible deniability built on the fiction of a normal distribution on a scale that is heavily skewed. Wessely absolutely did give the game away. And people laughed. Haha, so funny, we published fraudulent research that is...
  13. rvallee

    Blog: Changing the narrative #1: exploring a new approach to strategic communications in the ME community, by Valerie Eliot Smith

    It's definitely worth talking about the fact that our public perception is a serious problem. But that is a situation in which we are victims of disinformation and have no influence over how it will unfold in the future anymore than we did in the past (and not for lack of trying!). Maybe it...
  14. rvallee

    "This is M.E." booklet by Action for ME - Feedback survey

    I didn't even experience significant fatigue until several years into. IMO it's an optional symptom. It's a very common one, for sure, and definitely important, but it's a secondary symptom. There's a basic vocabulary problem at play here. No one would describe having the flu as being primarily...
  15. rvallee

    Concerns about Cochrane

    Citing income growth as first evidence of success is a very weak argument when it has nothing to do with the core mission. Over time, institutions adapt to become about preserving themselves and their leadership, even at the expense of their core mission. Great example. "We're rolling in cash"...
  16. rvallee

    'I’m just ill – respect me for who I am'

    This attitude is pretty amazing given the fact that most humans who ever lived died of disease in childhood. The belief that there is such thing as being too young to be sick is so bizarre.
  17. rvallee

    The association between adolescent well-being and digital technology use (2019) Orben et al.

    Wut? Well, that explains a lot. They truly do not understand how science works. Or just don't care? Or was that supposed to be sarcastic?
  18. rvallee

    Carol Monaghan granted a Backbench debate (UK Parliament) Thursday 24th January 2019

    Is the tense correct? It's in the past and they have all stopped advising insurance companies? I doubt that.
  19. rvallee

    Pseudobulbar affect anyone?

    I'm pretty certain I did. I described it in a post recently. I had lost consciousness at home a few weeks prior, suddenly while watching TV (it was my 4th time, I think). Afterward I wasn't able to move for 1h, vomited and tried to sleep but I was shaking intensely and fighting losing...
  20. rvallee

    Director of Danish Health Authority Letter to the Editor JoPR

    They mean psychosomatic. They always mean psychosomatic when using similar terms. This is an ideological school of thought rooted in deceit, they claim to agree that the symptoms are real because they know they can't say the quiet part loud. So it's "complex", or "vague" or "perception of...
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