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  1. rvallee

    Article: Canada - After long-awaited recognition, research begins in earnest around chronic fatigue | CBC News Oct 2019

    Title: New research into chronic fatigue syndrome https://www.cbc.ca/player/play/1629700163861 This is a great report. Really did their research. Wow. Incredible achievement by those who helped make this happen. Scott. Sabrina. Dr Moreau and his team. Minister Petitpas-Taylor. Everyone else...
  2. rvallee

    United Kingdom: Science Media Centre (including Fiona Fox)

    Technically, who knows better about politically motivated science reporting than those engaging in it? Straight from the horse's ass!
  3. rvallee

    Applications open for Australian government’s $3m ME/CFS grant

    Senator Steele-John is a hero. Glad he is taking this on.
  4. rvallee

    Simon Wessely Research & Related Quotes

    Not even sure what would be the point here. Most illnesses are "20th century" in the sense that before then we did not understand enough to know about most. Modern medicine pretty much began in the early 20th century, before then medicine did way more harm than good (BTW, watch The Knick, a...
  5. rvallee

    New video: What is ME?

    Excellent, as always. I hope people who organize conferences and other types of public talk are made aware of your videos, they make clear and concise presentations that are ideal for this format.
  6. rvallee

    Cognitive behavioural therapy for irritable bowel syndrome: 24-month follow-up of participants in the ACTIB randomised trial, 2019, Everitt et al

    This is disastrous and completely disqualifies the trial of any conclusions. When nearly half of participants are so disappointed in what they saw that they don't bother responding, that's a sign that you screwed up. It's seriously remarkable that you can find in the same paragraph that CBT is...
  7. rvallee

    Article: Canada - After long-awaited recognition, research begins in earnest around chronic fatigue | CBC News Oct 2019

    Bad title, as usual. Mostly OK article. Fumbled on the WHO recognizing the disease in 2015, rather than 1969. The title isn't only bad because of the fatigue but because it says research begins in earnest. That has yet to happen. The network is the step that may make research begin, it is step...
  8. rvallee

    HRA (Health Research Authority) & Bristol University's report on E. Crawley's CFS/ME Studies over registration to the Research Ethics Committee (2019)

    Skimming this and: multiple violations and missed requirements but it's all good because if those are retroactively fixed, did it really happen at all? Also of note: optional requirements. Apparently those are all the rage lately. Damn. Orwell would be impressed by this one. A panel openly...
  9. rvallee

    Rethinking the Standard of Care for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2019, Friedberg, Sunnquist and Nacul

    A pretty good paper. Despite, as some of the comments pointed out, some language that can and will be abused by saboteurs as they are worded in an ambiguous way, but then that happens regardless so whatever. It raises the important point of how CBT is otherwise never considered curative. That...
  10. rvallee

    Rethinking the Standard of Care for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2019, Friedberg, Sunnquist and Nacul

    I think that's mostly because typically something isn't considered a legitimate disease until its mechanism is known? For common parlance disease should definitely be used, there's just a higher threshold in scientific literature. Granted, that's not helpful given the reality of some people...
  11. rvallee

    Why the Cochrane review on exercise therapy for chronic fatigue syndrome is still misleading

    I don't remember exactly and not sure if this is it, I thought what I remembered was peer reviewers' comments to a previous version of the review, but it seems to be the initial response to Robert's comments that basically acknowledged the problems. It certainly highlights that those are not...
  12. rvallee

    Norway: Blog post about diagnostic criteria, Stubhaug, Lightning Process, Recovery Norge and more

    Oh, come on. How can it be OK for a licensed physician to blatantly lie like this? The results have been replicated and validated plenty, this garbage doesn't work and is completely inappropriate.
  13. rvallee

    'Controversies and Cock-ups in ME research: The Role of Human Failings' - Prof Brian Hughes to speak at Sheffield ME & Fibro Group Conference

    I gotta say, it's pretty funny that his specialty is about how stress affects health and even he is like "hold up, that's clearly not at all what's happening here". Good framing to highlight human failings. This is really the gist of what is happening, the same old problem of people being too...
  14. rvallee

    Anyone else’s submission to NHMRC (Australia) missing from website?

    https://consultations.nhmrc.gov.au/public_consultations/submissions/mecfs_2019a?
  15. rvallee

    Closed UK: Bath: Understanding how people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome utilise data from emerging sensing technologies.

    Granted, I am moderate-severe, ~99% housebound but have never been bedbound. But then anyone who can participate in such a study is unlikely to be this severe so it wouldn't really be applicable. Worse off and I could see some use if truly necessary to completely avoid going above a certain...
  16. rvallee

    Researcher Interactions Video: Science for ME Q&A with Dr Michael VanElzakker, Oct 2019

    I think it's a valid argument in that whatever the explanation is for ME, it is clearly beyond our current scientific understanding as we would otherwise have gotten something tangible. The fact that we are completely abandoned meanwhile is a different issue altogether and frankly has little to...
  17. rvallee

    Why the Cochrane review on exercise therapy for chronic fatigue syndrome is still misleading

    There is probably a strong point to make about how this hypothesis conflicts with another concept promoted by the same researchers: the boom and bust. There is no such thing as fluctuating deconditioning anymore than there is such a thing as sudden deconditioning, two characteristics that are...
  18. rvallee

    Why the Cochrane review on exercise therapy for chronic fatigue syndrome is still misleading

    Agreed on that. Immediate withdrawal is the only reasonable choice to make. It is politically difficult to do and unlikely to happen but it is inevitable with time, as meanwhile Cochrane is recommending a treatment paradigm that is documented to be harmful in numerous independent surveys that...
  19. rvallee

    Your experience of ME services - #MEAction UK survey report concludes services 'not fit for purpose'

    I will just leave this here for no particular reason. It is indeed terrible. And true. Truly terrible.
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