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  1. Trish

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

    Caroline Struthers has been submitting a separate series of complaints to various bodies including the Charity Commission, shown on this thread: Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.
  2. Trish

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

    Sorry to cause confusion, no we haven't complained to the Charity Commission. I was going to work on that but got sicker instead. We have submitted formal complaints to Cochrane, shown here and here.
  3. Trish

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

    I don't think they will listen to anybody but their own echo chamber.
  4. Trish

    United Kingdom: ME Association news

    I find it very odd to see a Seasons greetings card filled with photos of trustees and senior staff. Very pseudo corporate or something.
  5. Trish

    JK Rowling new book — chronic illness references

    One not to watch, I think.
  6. Trish

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

    I wonder what they will do about the S4ME complaints. Time for another one, if only any of us had the energy to compose and submit one to both Cochrane and the Charity Commission. I think I've reached the end of the road with composing letters to Cochrane. It's taken too much out of me. This...
  7. Trish

    JK Rowling new book — chronic illness references

    I doubt she did the casting. She doesn't do the TV scripts.
  8. Trish

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

    A couple of days ago. A bit later than planned due to health etc.
  9. Trish

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

    Petition now at 12,749 signatures. It becomes even more vital that the 2019 review is withdrawn now that we have the shocking news that Cochrane have rejected the draft protocol for the new review.
  10. Trish

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

    I wonder whether the protocol ever even reached the IAG for comment. The procedure set out by Cochrane had their editors and reviewers getting first comments. And rejection sounds very final. Not just asking for changes, rejection. Maybe Garner or someone else of that ilk was a peer reviewer...
  11. Trish

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

    I'm beyond words shocked by this. Cochrane have had the draft protocol for nearly 2 years and now this! No wonder things had gone so quiet in the last year. I hope the author team will publish the draft protocol themselves and Cochrane's explanation of the rejection.
  12. Trish

    UK: Royal Devon University Healthcare Trust: Planned and unplanned admission process for severe or very severe adult ME patients - clinical guidance

    Most of what is needed is in the NICE guidelines, so quoting from and referring to that gives a solid basis for recommendations.
  13. Trish

    Relaxing music for sleep

    That's a good point. I set the audiobook to just run for an hour.
  14. Trish

    Relaxing music for sleep

    Being a contrary person, I can't fall asleep to music. It either annoys me or has emotional associations that keep me awake. I fall asleep to audiobooks I've listened to multiple times already read by actors whose voices I find calming. Harry Potter books read by Steven Fry are most effective...
  15. Trish

    Wearable Technology in the Management of Complex Chronic Illness: Preliminary Survey Results on Self-Reported Outcomes, 2025, Sawyer

    I find it strange that the abstract doesn't state what biometrics are monitored. I assume this is the Visible data, which as I understand it just monitors heart rate and heart rate variability, with patients subjectively recording their symptoms and activities. There is no objective monitoring...
  16. Trish

    UK: Disability benefits (UC, ESA and PIP) - news and updates 2024 and 2025

    Well done, @JohnTheJack. I hope this means you can get your home better insulated and heated.
  17. Trish

    Review Symptom perception in adults with chronic physical disease: A systematic review of insular impairments 2024 Riegel et al

    I have only read the abstract. I don't understand the concept of 'poor symptom perception'. I thought the definition of symptom is what the person experiences. Do they mean the symptom as reported by the patient does not match the disease pathology as objectively measured?
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