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  1. Trish

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

    I have just submitted this complaint to Cochrane on behalf of the committee. In brief, it's a complaint that we have not been informed of the outcome of our previous complaints, contrary to Cochrane's own complaints policy. This also means we theoretically can't escalate our complaint to the...
  2. Trish

    Prevalence and severity of anxiety, stress, and depression in long COVID among adults in Barcelona, 2025, León-Gómez et al

    Another stupid questionnaire study drawing false conclusions? I suspect guaranteed financial and practical support would lead to a reduction in anxiety far more effectively than psychological therapy for many sick people.
  3. Trish

    Dianna Cowern, Physics Girl, fundraiser 2024 and other news

    Edit: Responding to an edited post We should be wary of diagnosing someone's state of health on how they look on a short video clip. Many of us can look well when very ill. Think of how many of us are disbelieved by colleagues, clinicians, friends, even family we live with on the grounds that...
  4. Trish

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

    Hilda Bastian has just posted the following on her talkpage in response to some questions I asked there a few weeks ago. https://hbprojecttalk.wordpress.com/2024/12/18/brief-message/ Coincidentally I'm expecting to submit to Cochrane tomorrow a further complaint from the committee about the...
  5. Trish

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

    As I understand it their protocols are about what sort of studies they will include, what they are going to use as the primary and secondary outcome measures, how the data from the studies will be combined and analysed etc. In other words it's a paper and mathematical exercise, not one that...
  6. Trish

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

    Cochrane doesn't do research on human subjects. It does systematic reviews of other people's published research. Therefore I can't see why they would have an ethics committee.
  7. Trish

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

    If anyone wants to check, Hilda's updates are archived here: https://web.archive.org/web/20240415215657/https://community.cochrane.org/organizational-info/people/central-executive-team/evidence-production-methods-directorate/stakeholder-engagement-high-profile-reviews-pilot
  8. Trish

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

    Maat quoted this bit: I responded: It confused me. I've just checked and can see why. The quote was incomplete. It should have read: So it seems the going back to the drawing board and reconfiguring the project refers to the preceding sentences about pandemic and restructuring, not to the...
  9. Trish

    [Poll] How does exertion affect sleep? (Read instructions in first post)

    I've done the poll. I ticked tired but wired (among other things) but it's not before bed, it's when I try to settle down to sleep and keeps me awake for hours.
  10. Trish

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

    To clarify, I knew because Hilda put it in one of her published updates that there had been a complaint that wanted the new review process stopped and took a year for Cochrane to decide on, during which the IAG were told to stop work, but the author group were allowed to continue. But i thought...
  11. Trish

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

    I wonder whether there is more correspondence now about the republishing as a 2024 review, which presumably Larun had to agree to, as lead author.
  12. Trish

    Donating and fundraising by people with ME/CFS - discussion thread

    I completely agree with that.
  13. Trish

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

    The team writing the Larun review are mostly based in Norway. I think we have discussed before whether they are subect to Norwegian FOI. I've forgotten the answer.
  14. Trish

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

    It's not just about the UK. The Australian new guideline process is happening and they have some Cochrane insiders fighting to retain GET, especially Paul Glasziou. No doubt other countries too.
  15. Trish

    Donating and fundraising by people with ME/CFS - discussion thread

    You're right of course, but maybe you'd be surprised at how easy it is to make people feel pressured. Even just discussion of fundraising on a forum like this, where so many members are struggling just to get through each day and to have sufficient funds to eat and heat their homes, some people...
  16. Trish

    Donating and fundraising by people with ME/CFS - discussion thread

    I don't think we can make assumptions about what anyone else can do. Lives are complicated. Some can, some can't, and none should be pressured into trying.
  17. Trish

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

    I missed that bit. I must read it again more carefully. I wish she'd name them. Well, they clearly succeeded in stopping the project in the end.
  18. Trish

    What could it mean biologically that both physical and cognitive exertion can cause PEM?

    The trouble for me with showers is not so much the sitting under the warm water, it's all the undressing, hair washing, drying, dressing that exhausts me. I wouldn't even try to get in and out of a bath these days.
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