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  1. MSEsperanza

    Lightning Process - discussion thread

    It's nice to also see both the new NICE guideline and https://lp-fortellinger.no/ referenced.
  2. MSEsperanza

    Closed UK: DecodeME updates, was recruitment thread.

    I looked for a short sentence explaining that severely affected are included in DecodeME. Brain-fogged, it took me a while to note that in the FAQs, providing the sample is under a different column than signing up, where only the questionnaire is mentioned. Still didn't find a sentence that...
  3. MSEsperanza

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Just wanted to clarify one point of my critical view on suggesting Cochrane should use the NICE evidence review. I'm confident that both NICE and we are able to defend the NICE review and guideline, and that the process was reasonable and thorough. I just doubt that Cochrane agrees with some...
  4. MSEsperanza

    Norway: Article about ME seminar with security

    Downloaded JPGs of invitation and agenda. Files attached.
  5. MSEsperanza

    Functional Neurological Disorder is a Feminist Issue 2023, McLoughlin, Chalder et al

    Perhaps a letter to Margaret Atwood would be worthwhile?
  6. MSEsperanza

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Thanks for this. Agree with others it's a very useful letter. Maybe now redundant but one last post already written on the issue with the NICE review before you posted your complaint about the editor-in-chief. [Edit: the follwing is not a critique of your most recent letter but about the point...
  7. MSEsperanza

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I understood that you were wanting to make a simple point but think a) it is a weak point b) it isn't that simple c) it could prove detrimental to our cause -- for various reasons I was trying to explain in my posts above, including that your only source is a bmj article that doesn't give a...
  8. MSEsperanza

    Are there CBT trials with objective outcomes?

    Good question. Also, how is this being discussed in the field of psychology and psychiatry? I realize there is some discussion about bias due to lack of blinding also in the field of psychology and some discussion on the placebo effect, but when I last looked, with the exception of authors in...
  9. MSEsperanza

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Apologies for not being clearer: From the bmj article I think it isn't clear what actually happened. What I understood from the article is that 1) Cochrane wanted to do a review (meta-analysis) on puberty blockers in minors, the authors team wrote a protocol but this was rejected. 2) I think...
  10. MSEsperanza

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    Thanks for spelling that out. Can relate to the part about making mistakes and trying to learn. More discussion about this would certainly be good. Also, I think when pointing out things that we find problematic it's good to refer to an actual post/ argument/ point by linking or citing. A...
  11. MSEsperanza

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    We have so many good arguments why Cochrane should withdraw the current exercise review. I don't think this argument adds anything useful -- on the contrary I think it's easy for Cochrane to rebut it. They could say: "Of course we can use NICE reviews if we agree with their methods and...
  12. MSEsperanza

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I realized that bit but the reasoning behind this officially seems to be there is no sufficiently strong evidence base to do a review. That is a step before doing the actual assessment of the evidence. And again, just to follow NICE's decisions per se seems not a good point -- see the old NICE...
  13. MSEsperanza

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Agree it is interesting. But is it a good example? I think the situation is hardly comparable -- only able to skim-read but if i understood correctly, the NICE commissioned an external reviewer to evaluate the evidence who found the evidence base not strong enough to issue an actual position...
  14. MSEsperanza

    A general thread on the PACE trial!

    James C.Coyne to Daniël Lakens on Twitter : "I volunteer to cover a topic that you won’t how the failure of the #PACE investigators to share the data for reanalysis hertz science and patients." ("hertz" = hurts I guess.)
  15. MSEsperanza

    Structural brain changes in patients with post-COVID fatigue: a prospective observational study, 2023, Heine, Scheibenbogen et al

    29% of participants (12/41) met IOM ME/CFS criteria So even if a small sample, would it be worthwhile to do a sub-group analysis? Also I wonder whether it's possible to compare the scans with the recent findings of changes in brainstem volumes -- discussed on theforum here. (That's what I...
  16. MSEsperanza

    Long Covid in the media and social media 2023

    Michael A Osborne on Twitter: "Today, Mar 15th, is #LongCovidAwarenessDay. Please amplify Long Covid voices." "My views on covid seem to have become a bit, well—radical. Please allow me to explain. I did not start out radical. I am lucky to have a settled, establishment-adjacent, career...
  17. MSEsperanza

    Useful arguments regarding the evidence provided by psychological and biomedical ME research?

    Not up to word a good short argument -- so today just leave this here as an example of how evidence-free BPS proponents in the field of ME and other medically not yet explained illnesses use to present their 'expertise': @Adam pwme on Twitter: "Trudie Chalder (PACE trial) is training health...
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