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  1. Trish

    Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

    Peter Gladwell is a physiotherapist. His PhD was on using TENS for pain. I think his clinical experience is pain and fatigue, with ME/CFS included.
  2. Trish

    Care and Support Plan template free to download, Action for ME

    The PACE trial manuals describe the different arms of the trial as: Simple Non-incremental Adaptive Pacing Therapy (APT) Complex Incremental Pacing /Cognitive Behavioural Therapy (CBT) Simple Incremental Pacing /Graded Exercise Therapy/ (GET)...
  3. Trish

    Boom and bust, another ME/CFS myth? - ME/CFS Skeptic blog

    Exactly. Very clearly stated.
  4. Trish

    Improving Quality in Adult Long Covid Services: Findings from the LOCOMOTION Quality Improvement Collaborative, 2024, Darbyshire, Greenhalgh+

    I don't seem to be able to post my reply on Bluesky directly. https://bsky.app/profile/ozfish.bsky.social/post/3l2hhrztgl22t Here's a copy: I also made a post drawing her attention to the Cochrane exercise review, but that seems to have disappeared into the ether. I'm not very practiced at...
  5. Trish

    Improving Quality in Adult Long Covid Services: Findings from the LOCOMOTION Quality Improvement Collaborative, 2024, Darbyshire, Greenhalgh+

    Why is she listening now when she and her chum Wessely haven't listened for 30 years? Could it be because some of their clinician friends and perhaps even family members have Long Covid. The next step is to ask Greenhalgh if she will make it clear the same applies to ME/CFS, and take positive...
  6. Trish

    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    As I understand it The Chronic Collaboration was basically Steve Topple and his partner. From MEpedia: https://me-pedia.org/wiki/The_Chronic_Collaboration The Chronic Collaboration was founded in August 2021 to advocate for improved treatment of chronically ill patients including people with...
  7. Trish

    Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

    Peter Gladwell is also on the IAG (independent advisory group) led by Hilda Bastian for the Cochrane Exercise therapy for ME/CFS new review. His influence in so many contexts is very worrying.
  8. Trish

    Boom and bust, another ME/CFS myth? - ME/CFS Skeptic blog

    I think the boom and bust idea is wrong, as illustrated by the studies @ME/CFS Skeptic describes in this article which show that there is not an inherently different behaviour pattern practiced by pwME when not in PEM compared to healthy controls. However, I don’t think that means the term...
  9. Trish

    The Chronic Elephant blog by hellytheelephant

    Hello @hellytheelephant, it's lovely to hear from you again, and read your musings on your life. :hug:
  10. Trish

    Boom and bust, another ME/CFS myth? - ME/CFS Skeptic blog

    A really excellent study, @ME/CFS Skeptic, thank you.
  11. Trish

    Care and Support Plan template free to download, Action for ME

    Letter sent here: Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template
  12. Trish

    Australia: News from Griffith University, National Centre for Neuroimmunology and Emerging Diseases (NCNED)

    Did the replication attempts do the same experiments to look at the same feature of NK cells?
  13. Trish

    Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

    (continued from previous post) 5. The sections on activities and limitations is both too long and inadequate The lists provided as examples of activities that a pwME finds difficult and/or need help with are very odd, focused mostly on mild ME/CFS, for example listing details of types of...
  14. Trish

    Open letter to Action for ME with concerns about their promotion of a problematic Care and Support Plan Template

    I have just sent the following letter to AfME, signed by 15 forum members, including the 5 available committee members To discuss the document and AfME's promotion of it, go to this thread: https://www.s4me.info/threads/care-and-support-plan-template-free-to-download-action-for-me.39801/...
  15. Trish

    Care and Support Plan template free to download, Action for ME

    Thanks, names added.
  16. Trish

    Care and Support Plan template free to download, Action for ME

    If anyone wants to add their signature to my letter to AfME about this document, please do so by 2pm tomorrow. You can read it on this members only thread. Once I've sent it I'll post it on a public thread.
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