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  1. Trish

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    It seems like time Cochrane was closed down. They are in any case duplicating the evidence reviews done for national guidelines, and not doing them well because they rely too much on people who have vested interests rather than real understanding.
  2. Trish

    News from the USA, United States of America

    Thread on the study: Immunological and Antigenic Signatures Associated with Chronic Illnesses after COVID-19 Vaccination, 2025, Bhattacharjee et al
  3. Trish

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    https://community.cochrane.org/organizational-info/plans/future-evidence-synthesis-cochrane/about-cochranes-new-production-model#:~:text=and%20systems%20challenges-,Funding%20challenges,National%20Institute%20of%20Health%20Research.
  4. Trish

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    I thought it was the NIHR decision to stop funding Cochrane. It led to the major reorganisation of Cochrane that was part of the excuse for delays to the now cancelled new review process.
  5. Trish

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    The original statement by Karla Soares Weiser is suitably quotable. I'll look up the link.
  6. Trish

    Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

    Some posts have been moved to: Whitney Dafoe Updates
  7. Trish

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    Hilda Bastian has posted on her new Cochrane Stuff page saying she has submitted to Cochrane Comments about missing comments from previous versions of the review that should still be visible attached to the current version. Her post starts: more at link.
  8. Trish

    Review Mitochondrial Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, 2025, Syed, Karius, Wang, Hwang

    If anyone is writing to them, please can you ask them not to use the word fatigue for PEM. It's so misleading.
  9. Trish

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

    I suspect it's a decision by deaf people's organisations not to refer to deafness as a disability. I have done a quick bash through the questionnaire. I can't see the plan happening. It seems to require everyone applying for PIP's replacement to be provided with an advocate to help them...
  10. Trish

    Trial Report Which factors predict outcome from specialist physiotherapy for functional motor disorder?... 2025, Nielsen, Stone, Carson, Edwards et al

    I've only read the abstract. So maybe the patients were right, those who did not improve on self reported measures already knew at the start that the treatment would be useless. Those who improved on the self reported measures were more willing to be persuaded they had improved. So it seems...
  11. Trish

    Managing Energy, and Shaping Care: Insights from Adults with [ME/CFS] Through Co-Production Workshops, 2025, Thornton+

    I'm guessing this is a student project. It's too small and inconsequential to be serious paid for research.
  12. Trish

    Jake Hollis - "The Fatigue Psychologist"

    Jake Hollis I wish you well, but please stop writing articles like this that may make you feel good about yourself and feel like you are helping, but which can cause enormous distress and harm to those of us not as fortunate as you to recover. Your story is not new or special, it is a...
  13. Trish

    Opinion An Ethics of Care, Relational Suffering, and Contested Invisible Disability, 2025, Christopoulos & Peter

    Thank you Peter, you saved me having a rant as you have said most of it. Clinicians really have made a mess of conditions like ME/CFS. What we need is accessible medical care, diagnosis, straightforward statements that neither cause nor cure is known, and practical advice and help. Instead...
  14. Trish

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    Hilda Bastian on Bluesky: https://bsky.app/profile/hildabast.bsky.social/post/3li6xkxp3bc2r ‪@hildabast.bsky.social‬ #CochraneStuff This is getting complicated, so I've started a page to keep track of what I post about the Cochrane Collaboration across platforms...
  15. Trish

    Jake Hollis - "The Fatigue Psychologist"

    I think you have probably got it right, Hoopoe. This seems to be yet another example of the people lucky enough to recover from ME/CFS or LC who want to retrospectively claim special knowledge and insights led to their recovery. Fine if that helps them personally, and gives them a story to...
  16. Trish

    Three-Month Durability of Bilateral Two-Level Stellate Ganglion Blocks in Patients with [GAD]: A Retrospective Analysis, 2025, Mulvaney et al

    I find it bizarre that changes in numerical scores on a questionnaire are treated as though they are linear measurements and can be quoted as 52% improvement.
  17. Trish

    2025: The 2019/24 Cochrane Larun review Exercise Therapy for CFS - including IAG, campaign, petition, comments and articles

    I haven't had an acknowledgement yet that they have received our complaint about the 2024 version. That was supposed to be done within 3 days, and it's over a week now.
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