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  1. NelliePledge

    Rapamycin Pilot Treatment Trial for ME/CFS

    Or to take a less cynical view of the forum most comments involve a healthy dose of scepticism and unwillingness to jump on latest bandwagons which is a reasonable response to years of lived experience of gaslighting behavioural models and slow progress on biomedical research.
  2. NelliePledge

    Still to open Exploring Worry in CFS/ME, King's College London

    Sorry mr/ms Kalfas I see your name and my brain tells me Kafka :whistle:
  3. NelliePledge

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    9400 now :thumbup: Everyone who has social media please share the link every couple of weeks to help reach 600 more people.
  4. NelliePledge

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Six weeks on from “in the next few weeks”, six weeks til Christmas, chances of “the next few weeks” turning out to be in 2023 are looking slim to impossible.
  5. NelliePledge

    Dentistry; dental treatment

    ME Association have a dental advisor they may have a leaflet about dental care or you could put a question to them through their website or Facebook
  6. NelliePledge

    Review Does the effect of CBT for CFS (ME/CFS) vary by patient characteristics? A systematic review and individual patient data meta-analysis, 2023, Knoop

    Interesting in the sense that it’s a website based in India so big reach potentially. Maybe it would be worth someone emailing her to point her towards better sources?
  7. NelliePledge

    United Kingdom: ME Association news

    Another article from ME Association about CBT research by Knoop et al https://meassociation.org.uk/2023/11/the-me-association-raises-concerns-about-new-research-promoting-cbt-as-a-treatment-for-me-cfs/
  8. NelliePledge

    Petition: S4ME 2023 - Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review

    Millions Missing France have included the petition link in this facebook post about psychologisation https://m.facebook.com/story.php?story_fbid=pfbid0mK5CS9xpBY5bcz7BDNKmz2iuTUcgbjW3XBNgZ6jrmxYkHBsgfrtWmVUA4Aw95otNl&id=100067419996509&mibextid=WC7FNe
  9. NelliePledge

    Patient perspectives of recovery from [ME/CFS]: An interpretive description study, 2023, Hasan, Busse et al

    Based on 33 people recruited through social media I disagree that indicates their findings indicate anything is widespread among people with ME/CFS diagnosis
  10. NelliePledge

    Review Does the effect of CBT for CFS (ME/CFS) vary by patient characteristics? A systematic review and individual patient data meta-analysis, 2023, Knoop

    By more intensive treatment presumably they mean more CBT brainwashing Eta oh so time contingent physical activity ie GET also included the full Monty
  11. NelliePledge

    What is a proper DALY weight for ME/CFS?

    https://www.oatext.com/Estimating-the-disease-burden-of-MECFS-in-the-United-States-and-its-relation-to-research-funding.php#:~:text=Using%20the%20above%20formula%2C%20our,impact%20in%20the%20United%20States. Link to the paper by Mary Dimmock and Leonard Jason
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