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  1. Arvo

    Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

    Thanks @Sly Saint ! It's the trick they've used from the earliest times, talking about unknown aetiology and/or lack of single biomarker like it means "no physical abnormalities that indicate illness can be found". (Another trick is that you can't find treatable disease, the added adjective...
  2. Arvo

    News from Doctors with ME

    I think I know him from Twitter. Although that one could be one of the other 3....;)
  3. Arvo

    Human to human lyme transmission paper sought

    I once asked a similar question (how this paper's author was able to detect the bacteria in - I believe it was semen and vaginal mucus?); the answer was that labs don't work with dark field microscopes anymore for detection. They used to detect syphilis this way (also a spirochete), but then a...
  4. Arvo

    The trial endpoint issue (135 weeks)

    Reacting as a layperson: Don't they expect to have extra good results then if participants have done GET followed by CBT? In the example Michiel Tack gave me this week it concerned the control group. I thought: what a nice loophole, offering your control group the tried out therapy (CBT), and...
  5. Arvo

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Hey wait, that is a little bit different then in the pauze puzzle thread I think? There I have 8/7 quality assurance sign off. 26/7 resignations 30/7 sign off guideline by Guideline Executive Which is about the same, but looking at NICE's answers it seems like the 8/7 was the actual sign off...
  6. Arvo

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Page 28 of the PACE trial CBT manual for therapists. I thought it might be of interest for people responding to the RC nonsense. (If I'm posting in the wrong thread, then I'm sorry mods!)
  7. Arvo

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    They're under the "Trial information" tab @JemPD
  8. Arvo

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    It looks to be dated 2002 (so that's how I put it in my files, although from the title I think it was also part of the original PDF's name). I don't know if it is the final used version or from e.g. an application for funding, as I am not so much at home with the PACE trial. (Someone else might...
  9. Arvo

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I think I have a CBT manual for the PACE trial, I'll dig it up.
  10. Arvo

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I'm afraid there are a couple, which read like the usual oldfashioned CBT. It's where the BPS/CBT proponents obviously got their bit in. Which is why it's vital that patients understand well that they are allowed and even expected to stay within their limits (as well as they can, this being...
  11. Arvo

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Good summary @Michiel Tack!:thumbup: Also handy for social media purposes.
  12. Arvo

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    I'd guess doctors, GP's, their members, journalists and the general public (I'm sure it'll be used as a press release), basically the network that can uphold their status quo for a while by being influenced. The names (Royal Colleges of X) are a brand, so whatever they say seems to carry weight.
  13. Arvo

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    People have been suffering badly under the old guidelines, which were fine by them. Now there are new ones, which include a careful review of the evidence (which they hate for personal reasons), and that are celebrated (or semi-celebrated because not enough/there's been so much pain and...
  14. Arvo

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Can confirm. I'm only looking at a couple of earliest years and I feel like I already have enough to write a thick (and juicy) book.
  15. Arvo

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    ps: Good luck with your tooth @Simbindi And @adambeyoncelowe and @Keela Too , it must be so nice to finally be free to talk about the guideline and its process! (Adam, also thanks for the elaborations on how and why certain decisions were made.)
  16. Arvo

    UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

    Doing poorly, so unfortunately I can't join in the discussion much atm. Just wanted to drop by to give everyone, and especially the people who were directly involved in developing the NICE guidelines, a big :thumbup::emoji_cake:. I see quite some possible pitfalls that need careful vigilance...
  17. Arvo

    Fatigue in patients with chronic disease: results from the population-based Lifelines Cohort Study, 2021, Goërtz, Knoop et al

    Yes, this is the direction Knoop is heading in for a while now: just chucking everything on a great big heap under a CBT empire for everything. I really wish some good investigative journalism would be set loose on it (connections, sponsors etc.), but that doesn't really happen much in The...
  18. Arvo

    Evidence based care for people with chronic fatigue syndrome and myalgic encephalomyelitis, 2021, Sharpe, Chalder & White

    No, I don't, but I would not be surprised if that would be uncovered to be be NHS policy. I have not looked into it much, but I've seen glimpses in The Netherlands of MUS briefings for I believe our version of the DWP where the same types of advice are given. I strongly suspect doctors are also...
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