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  1. MSEsperanza

    Clinical trial outcome measures of improvement and recovery in ME/CFS - which ones are useful? Discussion thread

    I think any measure of changes in physical activity should be accompanied by measures of diverse features of cognitive performance (with respect to both time and quality). We repeatedly discussed that in mild to moderate ME people can do certain activities at cost of other activities. To a...
  2. MSEsperanza

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

    Not sure if we have a thread about some health care professional's enthusiasm about exercise as medicine in general. Don't feel up to search or open a new thread so apologies if that's too off topic: https://www.movementandthemind.co.uk/ (Garner currently not listed as a speaker -- just...
  3. MSEsperanza

    A general thread on the PACE trial!

    Apologies if this blog post from 2013 has been posted already: Abu Abioye, Students 4 Best Evidence Assessing the PACE trial using the CASP Tools for Randomised Controlled Trials...
  4. MSEsperanza

    Clinical trial outcome measures of improvement and recovery in ME/CFS - which ones are useful? Discussion thread

    What about the tests for cognitive performance, in particular reaction speed, that were used in the trial discussed here?
  5. MSEsperanza

    Effect of Galantamine Hydrobromide in Chronic Fatigue Syndrome A Randomized Controlled Trial, 2004, Blacker et al.

    And may be also for arguing that there exist useful objective measures to assess cognitive performance, e.g. response speed? (see Hutan's post before the one I quoted.) @Snow Leopard @Woolie @Jonathan Edwards @Carolyn Wilshire (Discussion on that topic here. )
  6. MSEsperanza

    Preprint: The Rise And Fall Of The Wessely School, 2021, Marks

    I don't think so but to me it still seems an odd analogy, also may be prone to misunderstanding.
  7. MSEsperanza

    Preprint: The Rise And Fall Of The Wessely School, 2021, Marks

    Looking forward to reading this essay -- alongside the blog articles by Healthcare Hubris (link posted on the forum here) that seem to cover a bit of a similar topic from another angle. (?) It would be much easier for me to read if it had a table of content, though, even if without page...
  8. MSEsperanza

    Over which physiological abnormalities in ME/CFS is there a scientific consensus about?

    I missed that. I realize everyone's scarce capacities at the moment. But could be a worthwhile future project to use that collection to revise this paper from 2016? Edwards JC, McGrath S, Baldwin A, Livingstone M, Kewley A. The biological challenge of myalgic encephalomyelitis/chronic fatigue...
  9. MSEsperanza

    Over which physiological abnormalities in ME/CFS is there a scientific consensus about?

    Discussions about that topic on diverse threads, see e.g.: https://www.s4me.info/threads/jama-advances-in-understanding-the-pathophysiology-of-chronic-fatigue-syndrome-by-anthony-komaroff.10281/page-2#post-181985 members-only thread...
  10. MSEsperanza

    Trials on therapist-delivered treatments (for illnesses or symptoms that don't have biomarkers yet) that used objective outcomes as primary endpoints

    Again just parking a reference: https://www.s4me.info/threads/independent-advisory-group-for-the-full-update-of-the-cochrane-review-on-exercise-therapy-and-me-cfs-2020-led-by-hilda-bastian.13645/page-71#post-349789
  11. MSEsperanza

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

    Forum thread about Glasziou and the Handi working group's work on GET and 'CFS': https://www.s4me.info/threads/“graded-exercise-therapy-chronic-fatigue-syndrome”-by-the-handi-working-group-2019.10469/ (Still not able to catch up with the thread, just only very superficially skimming so...
  12. MSEsperanza

    Trials on therapist-delivered treatments (for illnesses or symptoms that don't have biomarkers yet) that used objective outcomes as primary endpoints

    Just parking that here -- not checked if this is on the thread about Placebos and/or in the Tack/Struthers/Tuller paper about blinding, just stumbled across that reference in Faulkner (2016) : Kamper SJ, Apeldoorn AT, Chiarotto A, Smeets RJ, Ostelo RWJG, Guzman J & van Tulder MW (2014)...
  13. MSEsperanza

    Trials on therapist-delivered treatments (for illnesses or symptoms that don't have biomarkers yet) that used objective outcomes as primary endpoints

    Not sure if I entirely agree. Maybe we need to differentiate between the trial investigators' flawed actions to hide and explain away objective outcomes they didn't like because they didn't support their claims on the one hand, and questions on how robust some of the objective measures...
  14. MSEsperanza

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

    Tagging also @adambeyoncelowe and @Keela Too in case that's relevant for NICE.
  15. MSEsperanza

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

    Quote from the director of the BBC ECU: It seems to me her language echoed the general advice given by the NHS and the UK Chief Medical Officers with regard to exercise. The NHS website says, for example, “Adults should do some type of physical activity every day. Any type of activity is good...
  16. MSEsperanza

    Trials on therapist-delivered treatments (for illnesses or symptoms that don't have biomarkers yet) that used objective outcomes as primary endpoints

    The editor Caroline mentioned is an exeption in this regard. Don't have the capacity to post the details now, but have a look at this and other reviews he was involved: Unfortunately, the most recent proocol he co-authored seems not to bother about the merely subjective outcomes thing and I...
  17. MSEsperanza

    Trials on therapist-delivered treatments (for illnesses or symptoms that don't have biomarkers yet) that used objective outcomes as primary endpoints

    Maybe I should add that I hope people also find some trials or reviews we could refer to as good examples. (cross-posted with Caroline)
  18. MSEsperanza

    Trials on therapist-delivered treatments (for illnesses or symptoms that don't have biomarkers yet) that used objective outcomes as primary endpoints

    Adding to the post above: Perhaps also relevant: It could be that the pain improved but it just was not relevant for the tial participants to increase their activity and be less sedentary? Would need to check if they compared the trial participants' activity levels to that of the patient...
  19. MSEsperanza

    Trials on therapist-delivered treatments (for illnesses or symptoms that don't have biomarkers yet) that used objective outcomes as primary endpoints

    I think that illustrates one problem very well: It seems to me possible that pain and quality of life actually improved although the underlying illness didn't. Since pain relief and better quality of life matter very much in a chronic illness, any benefit would be great. Due to not having an...
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