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  1. MSEsperanza

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    I think there are several threads discussing this topic. Not sure which one is the most appropriate. A members-only thread that includes somewhat related discussions on this topic but with another focus is here: https://www.s4me.info/threads/non-e...omedical-and-psychological-me-research.18266/
  2. MSEsperanza

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Perhaps we need to differentiate the target audience regarding this issue. What might be a good response to family and friends, might be an unfortunate feeding of a harmful narrative when stated in a conversation with a doctor (depends on the doctor) or in a public debate -- the wider the...
  3. MSEsperanza

    Does the Lightning Process Training Programme Reduce Chronic Fatigue in Adolescents and Young Adult Cancer Survivors? 2021, Fauske, Reme et al

    Edzard Ernst added a short comment on his blog article on the Lightning Process from last year: "the ‘study’ hardly deserves any discussion; no control group!" https://edzardernst.com/2020/06/the-lightning-process-implausible-unproven-hyped-and-expensive/#comment-133138...
  4. MSEsperanza

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    The new NICE Guideline for ME/CFS: Ten Questions Answered - The Science Bit https://thesciencebit.net/2021/08/15/the-new-nice-guideline-for-me-cfs-ten-questions-answered/ Haven't read it yet but this looks very good. Thank you, @Brian Hughes.
  5. MSEsperanza

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    I also hope that people are working on that already. Anyway, these are some questions that I likely would have asked if I were a journalist or an other observer new to the topic: 1) Was the evaluation of the benefits of treatment options done equally sound as before and as it is done with...
  6. MSEsperanza

    Objective assessment of diverse types of MS related fatigue and fatiguability

    Park this here for adding it to the OP later. Harrison, A. M., das Nair, R., & Moss-Morris, R. (2016). Operationalising cognitive fatigability in multiple sclerosis: A Gordian knot that can be cut? Multiple Sclerosis Journal, 23(13), 1682–1696. doi:10.1177/1352458516681862...
  7. MSEsperanza

    Operationalising cognitive fatigability in multiple sclerosis [...], 2016, Harrison et al

    Anyway, the paper contains a potentially useful "Summary of measures of cognitive fatigability operationalised in existing research" on MS (table 1, p.2-11).
  8. MSEsperanza

    Operationalising cognitive fatigability in multiple sclerosis [...], 2016, Harrison et al

    Only skimmed the paper but the conclusion caught my eye: Conclusion: "Future research may benefit from (a) developing a guiding theory of cognitive fatigability, (b) examining ecological and construct validity of existing assessments and (c) exploring whether the more promising cognitive...
  9. MSEsperanza

    Operationalising cognitive fatigability in multiple sclerosis [...], 2016, Harrison et al

    Harrison, A. M., das Nair, R., & Moss-Morris, R. (2016). Operationalising cognitive fatigability in multiple sclerosis: A Gordian knot that can be cut? Multiple Sclerosis Journal, 23(13), 1682–1696. doi:10.1177/1352458516681862 sci-hub.se/10.1177/1352458516681862 Abstract Background...
  10. MSEsperanza

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    quote: "The draft from November calls for a radical change in the treatment strategy, which has caused a furore among some clinicians and professionals in the field. They have criticized the change for not being adopted on a scientific basis. Conversely, the draft has aroused great joy among...
  11. MSEsperanza

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Via e-mail: Daily Digest: Chat to NICE ME/CFS guideline committee members (There are only 100 spaces to attend so register now!) After too many years of waiting, the final version of the new ME/CFS guideline developed by NICE will be published on the 18th August 2021! On Tuesday 24th August...
  12. MSEsperanza

    Germany: IQWIG Report to government on ME/CFS - report out now May 2023

    Thanks for your offer @FMMM1 . Luckily, I got very helpful answers from S4ME members. Many thanks to everyone.
  13. MSEsperanza

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Yesterday I posted here a question about Brian Hughes' blog article on the history of the review of evidence on ME/CFS commissioned by NICE. I deleted the post after I had received a reply from Brian Hughes. He gave me the permission to share his reply here:
  14. MSEsperanza

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    wouldn't it be good if someone of the best critics of the usual suspects had access to the SMC briefings?
  15. MSEsperanza

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Can't be repeated too often. (All 3 paragraphs) Huge thanks from me, too.
  16. MSEsperanza

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    If anyone wants to check the JAMA paper from 2001: Whiting P, Bagnall A, Sowden AJ, Cornell JE, Mulrow CD, Ramírez G. Interventions for the Treatment and Management of Chronic Fatigue Syndrome: A Systematic Review. JAMA. 2001;286(11):1360–1368. doi:10.1001/jama.286.11.1360...
  17. MSEsperanza

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Cochrane though use GRADE too, and repeatedly came to different conclusions in their assessment of the quality of evidence of therapist-delivered treatments. Also, didn't NICE use GRADE for their cr*p Guideline on "primary pain"? I think that point needs to be addressed -- see post above...
  18. MSEsperanza

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Indeed. I wasn't aware of that part of NICE's history. Thank you @Brian Hughes . I hope it's OK to quote a bit more from Brian Hughes' article. About the old (2007) NICE guidelines' evaluation of the then small evidence base: Edited for clarity.
  19. MSEsperanza

    NICE ME/CFS guideline - draft published for consultation - 10th November 2020

    Of course, the usual suspects will have an armada of eminent 'experts' who will try to defend their CBT-and-exercise-always-helps-especially-in-functional-illness-narrative, mixed with narratives along the lines of 'no trial is perfect' and 'if blinding is not possible in clinical trials, we...
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