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  1. rvallee

    Petition: Review treatment of people with ME in Scotland

    That seems optimistic. A pledge is not a promise, it's something that must happen. Is that accurate, that it's actually a pledge and not some vague promise, which we've had for decades by now?
  2. rvallee

    Open Quality of life study

    There's something about working out in cold weather that is deeply satisfying. But you do have to experience for it to make sense ;) You also adapt to cold weather. After a few weeks of very cold weather, -5C seems almost mild.
  3. rvallee

    Open letter to the Trustees and Staff of Action for ME about the 'Toolkit for professionals'

    Is a lobby group. Technically a charity but also technically an astroturf (i.e. fake grassroots) organisation.
  4. rvallee

    UK Parliamentary debate today - Thursday 24th January 2019

    I'm thinking it must a bit awkward when most of those outlets will have several very negative disinformation articles in their archives. Many like the Guardian have uncritically promoted the BPS team's every word as if it was unimpeachable truth, borderline labeling us as dangerous militants...
  5. rvallee

    UK Parliamentary debate today - Thursday 24th January 2019

    There's a big difference between intervening on specifics and day-to-day operations compared with highlighting what is evidently a massive failure. This is judging the outcome, not the process (though in this case one follows the other). NICE and professional bodies are free to do whatever they...
  6. rvallee

    Bruce Levin to speak at Columbia: "How NOT To Conduct A Randomized Clinical Trial"

    The slides have been taken down from Columbia's website. Probably a mishap but anyone knows how to get in touch with someone for that? It wouldn't have the same impact if it was hosted elsewhere (if someone had a copy), it's great that it was on the university's website. The video is still on...
  7. rvallee

    UK Parliamentary debate today - Thursday 24th January 2019

    Uhhh.. the RCGP cites the FINE trial as evidence. That's... shockingly bad.
  8. rvallee

    UK Parliamentary debate today - Thursday 24th January 2019

    Hahahaha. No. Definitely not a chance of that. It should look silly to anyone paying attention but this has been the PR strategy all along and they will keep saying that on their death bed.
  9. rvallee

    David Tuller: Trial By Error: Carol Monaghan Scores Another Parliamentary Debate

    Even more so when they have a legal obligation to rely on objective evidence and real-world patient input and data, which they have purposefully chosen to disregard. The legitimate objections from patient advocates are on public record. They form a damn long and voluminous record of failure...
  10. rvallee

    David Tuller: Trial By Error: Carol Monaghan Scores Another Parliamentary Debate

    This argument is used often and it's absurd on its face. This is not about basic science. The researchers themselves admit that they make no claims about cause, pathology or even imply that it's psychosomatic (which they do, they just keep that opinion out of those papers and the resulting...
  11. rvallee

    Treating medically unexplained physical symptoms: Effective interventions are available (1997) Sharpe & Mayou

    It does not diverge from what Sharpe is still writing about. It's also quite similar to the earlier stuff from the late 80's as well. It shows that the conclusion of what treatment they promote was the starting point, rather than a result of any significant research. This is ideological...
  12. 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

    Ideology and magical thinking. Also we are literally incapable of countering this, we are the perfect defenseless population almost no one cares about. If we relent, it's evidence that it works. If we object, it's also evidence that it works. There are very few of those left. Previous...
  13. rvallee

    Australia’s NHMRC ME/CFS Advisory Committee draft report released for public consultation

    http://www.sacfs.asn.au/about/guidelines/letter_mar_7.htm (ME/CFS Australia (SA) Inc: Letter to eMJA (March 7, 2002)) This is why we are facing so much irrational obstruction and sabotage. Every legitimate warning has come to pass. Objections have been consistent and evidence-based for...
  14. rvallee

    Real-world studies no substitute for RCTs in establishing efficacy (2019)- Gerstein McMurray Holman

    Has anyone ever promoted this as a replacement for RCTs? Ever? Bueller? Anyone? Both. All of it. This isn't a binary choice where one excludes the other. The most interesting results come from when real-world data conflict with research. It opens up the gaps in research (or in the data) and...
  15. rvallee

    David Tuller: Trial By Error: My Six-Month Review

    Avoiding embarrassment. Same with Lancet, Cochrane and everyone else. This is a massive failure and no one wants to be accountable for it so the only option is to continue doggedly despite knowing it is morally and intellectually bankrupt.
  16. rvallee

    David Tuller: Trial By Error: My Six-Month Review

    So far everything points to things getting worse before they get better. I don't know if there will ever be any consequences but many people have made horrible decisions from an ideological position and legitimate objections are just too voluminous and consistent throughout the decades. If there...
  17. rvallee

    Petition against National Competence center for CFS/ME with BPS approach in Norway - anyone can sign

    Well, this will age very, very, very poorly. It's correct that patient activism should not be a factor in medical guidelines. But dismissing and contradicting patient input, creating a fictional alternative representation of a disease has made it necessary. The issues have been raised...
  18. rvallee

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

    It's rarely conspiracy. It's just people defending an opinion who just happen to have been completely wrong for decades about a matter of life and death. It happens all the time. No one manufactured the AIDS crisis, it happened because majority opinion, including in the medical profession, was...
  19. rvallee

    Treating medically unexplained physical symptoms: Effective interventions are available (1997) Sharpe & Mayou

    I'll always marvel at the reality of medical professionals looking at sick people trying to get medical care and noting how strange and unnatural it would be for sick people to so insistently seek medical care because obviously someone experiencing serious health problems but being faced with...
  20. rvallee

    Treating medically unexplained physical symptoms: Effective interventions are available (1997) Sharpe & Mayou

    Some brilliant guy name, S Wessely, no, that's too obvious, let's call him Simon W. You wouldn't know him. But brilliant guy. Lots of people say that, believe me.
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