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  1. rvallee

    Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

    Barring a breakthrough (and it's not clear what that is considering that many diseases have become accepted without many of the requirements imposed on us) I'm not sure there's going to be much progress until the elephant-in-the-room of overdiagnosis of psychosomatic illness is addressed. Even...
  2. rvallee

    USA - NCHS/CDC Proposal for ICD-10-CM - adding SEID

    Seems they're adopting the bad from each side. Still an improvement over old CDC or Oxford but as far as progress goes, this is not particularly useful. There are very few genuine domain experts and they're rarely involved so most people trying to implement that probably have a mix of partly...
  3. rvallee

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    It's hand-waving. Details don't matter, the idea is to have an explanation, any explanation, and convert the "illness beliefs". There is no such thing as fluctuating deconditioning. People don't get deconditioned in a few days. Healthy deconditioned people usually recondition within a matter of...
  4. rvallee

    USA - NCHS/CDC Proposal for ICD-10-CM - adding SEID

    VA is a bit like NHS but restricted for veterans. They provide more than health care but as an agency it is one of the largest health care providers in the US. They run clinics, hospitals and various other programs. Budget-wise it is enormous. It's its own bureaucracy so it's unclear what it...
  5. rvallee

    Daily Telegraph: Living hell or yuppie flu? The confusing fog of chronic fatigue syndrome

    Yeah I'm OK, thanks :) Kinda. Best I can say is: I'm safe, for now. As long as my parents are healthy I should be fine. But if this drags too many years then uncertainty will increase.
  6. rvallee

    Daily Telegraph: Living hell or yuppie flu? The confusing fog of chronic fatigue syndrome

    During my last remission, I was so willing to believe that it was all behind me that I bought a condo. If it wasn't for the most incredible bit of luck that freed me of the contract (I relapsed a few weeks after signing) I would have probably gone bankrupt. Despite this I was severely in debt...
  7. rvallee

    Daily Telegraph: Living hell or yuppie flu? The confusing fog of chronic fatigue syndrome

    I'm still waiting on someone to explain how we are supposed to behave compared to how they think we should behave if we were wrong. AIDS advocates were 100x as militant as we ever were (thanks to healthy allies). Every other thing is exactly as you'd expect, especially being consistent over...
  8. rvallee

    UK Health Research Authority defends PACE. Answer to MP's question, February 2019.

    The exact same response we get every time someone asks to provide examples of harassment.
  9. rvallee

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    Reality check: those hypotheses are untestable without a mind-reading machine. Plus that's not even close to how deconditioning works and there's no such thing as fluctuating deconditioning.
  10. rvallee

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    Sharpe: I don't have a model. Reality: Literally says "illness model" in his own paper that he keeps telling people to read. The dishonesty of this man is limitless.
  11. rvallee

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    Ah, of course, the obligatory "have you read the paper?" from Sharpe. Nevermind that the article gives quite extensive explanations of how Bastian was exposed to the work over the years. Dare I say the professor has not actually read the paper? Nice victim complex, though. After years of...
  12. rvallee

    Onset patterns and course of myalgic encephalomyelitis/ chronic fatigue syndrome, 2019, Chu et al

    Indeed: http://meresearch.info/. I registered. First I heard of it.
  13. rvallee

    'Consumer-Contested Evidence: Why the ME/CFS Exercise Dispute Matters So Much' PLOS Blog post by Hilda Bastian

    It's a common thing. My health care system does the same. We're users or clients. I think it's in part because not everyone who interacts with health care is a patient in the sense of being sick and in need of care. Healthy people are expected to have regular (or occasional, jury's still out on...
  14. rvallee

    Onset patterns and course of myalgic encephalomyelitis/ chronic fatigue syndrome, 2019, Chu et al

    Not ideal, but it certainly highlights how every bit of progress is important and impact other things. A patient registry would really solve many of those problems. For now some steps are duplicated many times and it's really inefficient.
  15. rvallee

    This Might Hurt - documentary on pain treated with mind-body medicine.

    Those are rookie numbers, you gotta pump those numbers up: :banghead::banghead::banghead::banghead::banghead::banghead::banghead:
  16. rvallee

    Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

    But then they'd have to be accountable for it and they can't have that. It's just so easy to just imply that we're mentally inept, all the weight without any of that pesky being accountable thing. It's a win-lose, where millions people lose but whatever.
  17. rvallee

    David Tuller: Trial By Error: HRA Report Does Not Vindicate PACE

    Oh, but he was totally not involved. Simon said so. Except when he conceded that he was, but totally not involved (except a lot, yes).
  18. rvallee

    Ethical classification of ME/CFS in the United Kingdom (2019) Diane O'Leary

    I interpreted the way you mean it, in that there are possibly mental health problems that are actually psychological and that it's important to make that distinction, whereas others likely have a pathophysiology and can't be reduced to psychological support, especially not as primary treatment...
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