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  1. Trish

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

    I've posted this on Hilda's talkpage:
  2. Trish

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

    Hilda has provided on her talkpage a link to the archived version of the pages that had been taken down as live pages with all her official updates...
  3. Trish

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

    That's a disgraceful con trick. So we need to submit new 'comments' to the so called 2024 review. Unbelievable. I had no idea professional people could stoop so low.
  4. Trish

    UK Government ME/CFS Delivery Plan consultation

    I think it would have been better to separate out the responses from the different groups, though of course even in the 'patient' group there are 'recovered patients' who we could name who are ardent promoters of BPS.
  5. Trish

    UK Government ME/CFS Delivery Plan consultation

    The sticky fingers of the BPS and mind-body people are all over this document. I'm horrified.
  6. Trish

    UK Government ME/CFS Delivery Plan consultation

    I started reading and am horrified at the misinformation included, for example:
  7. Trish

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

    Hilda has responded on her talkpage to my latest post there. She reveals that: "The protocol hadn’t been sent to the IAG yet. (I haven’t seen it either.)" To me that shows just how badly Cochrane have failed again. The review writing group submitted their draft protocol to Cochrane in February...
  8. Trish

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

    I tend to believe that there was quite a lot of activity for 3 brief periods. First Hilda took over a year from early 2020 to mid 2021 to appoint the IAG and for the review writing group to be appointed. Then in mid 2021 the IAG collated all the criticisms of past and current Cochrane exercise...
  9. Trish

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

    I have posted the following on Hilda's talkpage:
  10. Trish

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

    Note that the talkpage is a rather unwieldy string of replies to her original introduction to the talkpage. https://hbprojecttalk.wordpress.com/2023/11/10/welcome/ Hilda's brief announcement about what she's doing now, ie discussing next steps with the IAG is a second post on the talkpage...
  11. Trish

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

    The exchanges I've quoted are on her talkpage which is public. https://hbprojecttalk.wordpress.com/2023/11/10/welcome/ The bit about her keeping her talkpage and email available is from a private email. If anyone wants to communicate publicly with Hilda, do it on the Talkpage. If you want to...
  12. Trish

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

    One of the things the IAG was working on was a draft editors note to be added to the 2019 review. This clearly hasn't happened. The current editors note says: Editorial note A statement from the Editor in Chief about this review and its planned update is available at...
  13. Trish

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

    This is Hilda's message posted on her talkpage: https://hbprojecttalk.wordpress.com/2024/12/18/brief-message/ 12/18/2024 Brief message Many of you will have seen Cochrane’s recent communication about the review on ME/CFS and exercise. We regret their decision to reject our advice, and are...
  14. Trish

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

    Another small shock from Cochrane. They appear to have taken down all Hilda's updates that were posted on the Cochrane website. The first 3 from May, June and July 2021 have been replaced by yesterday's announcement, and the last 2 from November and december 2023 go to page not found. I wish...
  15. Trish

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

    I have just posted this on Hilda's talkpage, which I suspect she will take down now that the process is cancelled: trishrhymes December 18, 2024 at 9:30 am Your comment is awaiting moderation. Hello Hilda, I am shocked, but not really surprised by Cochrane management’s decision to scrap the...
  16. Trish

    JK Rowling new book — chronic illness references

    I still use the Harry Potter books to help me fall asleep sometimes. I decided to detach them in my mind from the author. I have read a couple of her books for adults and was surprised at how badly written they are. I got the feeling that the attempt to transfer from children's fantasy to adult...
  17. Trish

    United Kingdom: ME Association news

    It seems particularly insensitive to send out a Christmas card featuring a photo of someone many pwME have just complained about and asked to stand down on the grounds of writing insulting articles containing bad advice. And we can't even usefully complain about it, as Neil Riley has also just...
  18. Trish

    JK Rowling new book — chronic illness references

    We have had such bad experiences in earlier times on the forum, much of it hurled at mods in private. We have worked hard to keep the forum ethos friendly and constructive, to create a safe space.
  19. Trish

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

    Too late, I think. Today's announcement from Cochrane specifies that any complaint has to go via the official Cochrane complaints procedure, and any addressed to anyone else will be ignored.
  20. Trish

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

    Davenport was on the review writing group appointed by Cochrane to write the new protocol and review.
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