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  1. rvallee

    Cochrane ME/CFS GET review temporarily withdrawn

    But none of the researchers are arguing it is psychosomatic, just that psychological treatments may be beneficial to some and only because the fudged stats demonstrate it. Of course they are lying and have written extensively that they believe it is psychogenic. But they need to maintain the...
  2. rvallee

    First analysis of ‘pre-registered’ studies shows sharp rise in null findings

    According to Sharpe (from a tweet) PACE was fast-tracked because it was pre-registered. Nevermind they deviated from protocol and switched outcomes to such a degree that this makes it deliberate fraud but that would be an inconvenient fact to acknowledge.
  3. rvallee

    Cochrane ME/CFS GET review temporarily withdrawn

    Same as AHRQ did in the US. They concluded rightfully that the Oxford criteria are crap. Removing studies with Oxford criteria made it clear the effect was an illusion. Case closed: no evidence. A lot of this is down to the Oxford criteria and Sharpe and Wessely will defend them to no end. This...
  4. rvallee

    Cochrane ME/CFS GET review temporarily withdrawn

    This is definitely part of the larger IAPT project (or whatever the next mutation chaired by Wessely is called). PACE is a pillar of this because it supports CBT and GET in a disease that, despite the flawed recommendations, is still defined by NICE as a physiological disease with devastating...
  5. rvallee

    Cochrane ME/CFS GET review temporarily withdrawn

    This is an ethical problem, not legal. People are getting hurt so there is a legal element but we have no legal standing since harm is not acknowledged in our case, even with thousands of testimonies claiming so and patient surveys confirming it. Enforcing ethics is down to choice and heavily...
  6. rvallee

    Cochrane ME/CFS GET review temporarily withdrawn

    And despite the flawed recommendations for CBT/GET, that it is a physiological disease is also the official NICE position. They just ignore it entirely in favor of magical thinking but they understand they cannot argue otherwise. So obviously it's a valid position to insist what is already...
  7. rvallee

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

    Regardless of which direction the guidelines go, is it possible to push forward the need for patients to report harm done as a result of whatever treatment they end up recommending? Even in the (likely, frankly) worst case scenario that politics overrule science and they mostly keep the...
  8. rvallee

    NICE guidelines: Final scope and equality impact assessment published

    "What kind of emotional despair lead an otherwise happy person to jump out of a burning building? Surely smoke and intense heat are secondary to such a horrific act which must be interpreted from a psychosocial lens and unreasonable expectations of ambient heat and air particulates."
  9. rvallee

    BBC Wales are planning a story on ME

    Here's that "chronic fatigue" again. :banghead: It's getting beyond tiring that people with no understanding of this disease control the message for how it is discussed.
  10. rvallee

    Redress for financial and social harms

    It will happen in the future. We're just too early to have standing in court. I tried to get that going a few months back but we don't have the capacity to have an effect. Most, as I, are barely holding on as it is. I thought it worthwhile to get it started just so things are on record, but I...
  11. rvallee

    Guardian 'diabetes is biopsychosocial'

    I think an intellectually honest BPS model has a place in medicine. But the current model is 99% psychosocial and pretty much 90% psychological. The bio part is added to pretend they incorporate biology but then they make no cooperation or even dialogue with the biomedical researchers. When the...
  12. rvallee

    Guardian 'diabetes is biopsychosocial'

    Le même :) Gendered objects are a weird feature of some languages. Lady chairs and mister sofas. And completely arbitrary so it's about as frustrating to non-native speakers as the damn feature of the English language to have multiple pronunciations of the same spelling. There's just no rule...
  13. rvallee

    Cochrane ME/CFS GET review temporarily withdrawn

    I'd say it's likely an all-hands-on-deck situation. Everyone involved will do what they can behind the scenes. The process is completely opaque at this point and that's worrying. It's politics vs. science and the determining factor will likely be in how many on the side of science are involved...
  14. rvallee

    Dr Alan Moreau's new, low-stress protocol for provoking PEM.[Thoughts?]

    I think that's the idea, to have a test that can be deployed much more widely. It's portable and way cheaper than CPET but also doesn't provoke serious deterioration, which is a hard sell for CPET when the hypothesis is "this could cause severe long-term harm to the patient". Which is of course...
  15. rvallee

    Dr Alan Moreau's new, low-stress protocol for provoking PEM.[Thoughts?]

    They're not funded by government. It's a private grant from a foundation so likely pretty small. I think the strategy is to build up to hypothesis-testing so CIHR (the NIH-MRC equivalent for Canada) will release some of the $1.8M they have so far kept untouched.
  16. rvallee

    David Tuller: Trial by Error. A statement in Support of Cochrane

    I sent it yesterday. No reply. Still trying to find the energy to finish my letter to her editors. I will include that I requested evidence for the allegations and the fact that she did not respond to a simple request on information that should be readily available since she surely would have...
  17. rvallee

    Guardian 'diabetes is biopsychosocial'

    That's not unreasonable on certain levels but as long as BPS is 99% psychosocial it's not gonna lead to good outcomes, quite the opposite in fact. They seriously need to clean house on their pet project before forcing it on people who can't object or will have no means of complaints. Because...
  18. rvallee

    How anxiety of benefit sanctions damages mental health

    I bet he'll argue that this is an argument to increase and accelerate those services, that it's not that it's not working, it's that it's not big enough. And yet what's the expectation from IAPT? 5%? And that's probably very generous. How long can this farce be sustained?
  19. rvallee

    Improving Access to Psychological Therapies (IAPT) - The Need for Radical Reform, 2018, Scott

    I have seen that many times in the wild. Naming a syndrome, which by definition means a collection of symptoms, by a single symptom should be considered malpractice. It's complete nonsense. Not even counting that fatigue is a misleading description in the first place. The hubris and arrogance...
  20. rvallee

    Cochrane ME/CFS GET review temporarily withdrawn

    I think it's pretty obvious they did this to preempt the withdrawal, bullying Tovey into not taking a step that will be hard to reverse. They're that predictable. The potential for bad attention is worth it when they control the message and can have false allegations of misconduct published as...
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