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  1. Trish

    Crowdfunded awareness campaigns including billboards

    I guess it might work in some countries. I hate billboards, as in cities they distract drivers and add the visual clutter, and in the countryside they distract drivers and spoil the view. I wouldn't recommend such campaigns in the UK, but that's just my personal view. I'm all for temporary...
  2. Trish

    Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

    Thanks, Caroline, you have been doing a valuable job with your letters. I think the responses to us add to the picture. I think we may want to pursue other avenues such as Cope and the Charity Commission too, and likely will be coming to you for advice. We haven't decided on the next stage yet.
  3. Trish

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

    . To be fair, the email did start: Dear Trish Davis. (Our letter was signed with my name on behalf of the committee.) But someone the letter was addressed to really should have been prepared to put their name to signing it.
  4. Trish

    Opinion Creating a “Brain-Mind-Body Interface Disorders” Diagnostic Category Across Specialties 2023 Maggio, Adams and Perez

    Oh how exciting, another stupid naming category dustbin for us to be thrown in. :banghead:
  5. Trish

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

    I think it's clear they are referring to the endless rounds of editing the 2019 review underwent before it was finally published. It hasn't been altered since 2019. So that would be well over 100 weeks so far since they last promised an update in a few weeks.
  6. Trish

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

    So to clarlfy: Here are our questions, with Cochrane's answers in quote boxes: 1. Will the 2019 Larun review that Dr Soares-Weiser acknowledged was flawed four years ago be removed immediately? 2. If not, why not? 3. Who has the authority and responsibility to remove a Cochrane review that has...
  7. Trish

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

    No, that's a reference to Rachel Marshall, see Question 6 below: The above was a reply to our questions in the letter we sent 10 days ago: _________ 1. Will the 2019 Larun review that Dr Soares-Weiser acknowledged was flawed four years ago be removed immediately? 2. If not, why not? 3. Who...
  8. Trish

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

    The forum committee received a reply today, posted on the letters thread and copied below so members can discuss it. ________________ Thank you for your email. The 2019 version of the review has undergone thorough editorial scrutiny and the matter is closed. For any new concerns about this...
  9. Trish

    Exploring the complexities of illness identity and symptom management in seeking a diagnostic label of (POTS) 2023 Iris Knoop, Moss-Morris et al

    My conclusion from reading this is that we don't need health psychologists to sort out the problems people with POTS are experiencing, we need accessible functioning diagnostic services and well trained GP's to recognise the symptoms and refer patients to the experts for diagnosis and to get...
  10. Trish

    Exploring the complexities of illness identity and symptom management in seeking a diagnostic label of (POTS) 2023 Iris Knoop, Moss-Morris et al

    Iris Knoop is a PhD student at King's and this is her research project, presumably in the Health Psychology department under Moss Morris supervision.
  11. Trish

    Covid-19 vaccines and vaccinations

    I had the Phizer one a week ago. It says on the documents I was given that it's XBB 1.5 which is the most updated version available anywhere, I think.
  12. Trish

    The Observer/Guardian article: Does the microbiome hold the key to chronic fatigue? About patient led 'research' group Remission Biome.

    The one who calls herself DrT is all over the bluesky alternative to Twitter too, with strings of posts about the protocol and boasts about lots of people doing it and lots of donations. It's really out of hand, and sadly some people are desperate enough to think she's a real doctor I suspect...
  13. Trish

    USA: News from Solve ME

    An email: Dear Friends, It is with great enthusiasm that I announce that Kristin Jacobson, a fierce patient advocate and member of Solve’s Board of Directors, will lead our organization as our newest President and CEO. She succeeds Oved Amitay, who served from June 2020 - October 2023. When...
  14. Trish

    Review A Scoping Review of Pacing for Management of [ME/CFS]: Lessons Learned for the Long COVID Pandemic, 2023, Sanal-Hayes et al

    The abstract has changed slightly since the Preprint: A scoping review of ‘Pacing’ for management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): lessons learned for the long COVID pandemic Nilihan E. M. Sanal-Hayes, Marie Mclaughlin, Lawrence D. Hayes, Jacqueline L. Mair...
  15. Trish

    Balance-ACT Study - Chalder

    Tweet says: Dr Asad Khan: Dear #LongCovid community here’s an information leaflet for a forthcoming #LongCovid intervention study headed by Trudie Chalder. Avoid this like the plague. Consider writing to the investigators (email at bottom) asking what the intervention is & the science behind it...
  16. Trish

    Covid-19 vaccines and vaccinations

    New analysis published on effectiveness of vaccines in preventing Long Covid. Thread here: The effectiveness of COVID-19 vaccine in the prevention of post-COVID conditions: a systematic literature review and meta-analysis, 2023, Marra et al
  17. Trish

    The effectiveness of COVID-19 vaccine in the prevention of post-COVID conditions: a systematic literature review and meta-analysis, 2023, Marra et al

    The effectiveness of COVID-19 vaccine in the prevention of post-COVID conditions: a systematic literature review and meta-analysis of the latest research Alexandre R. Marra et al. Abstract Objective: We performed a systematic literature review and meta-analysis on the effectiveness of...
  18. Trish

    Long Covid in the media and social media 2023

    Some posts have been moved to: Germany's Kliniken Schmieder group 2022 report on Long Covid research A post has been moved to: The effectiveness of COVID-19 vaccine in the prevention of post-COVID conditions: a systematic literature review and meta-analysis, 2023, Marra et al A post has been...
  19. Trish

    Evidence of a genetic background predisposing to complex regional pain syndrome type 1, 2023, Shaikh et al

    Evidence of a genetic background predisposing to complex regional pain syndrome type 1 Samiha S Shaikh1, Andreas Goebel2,Michael C Lee3, Michael S Nahorski1,Nicholas Shenker4,Yunisa Pamela1,5,Ichrak Drissi1,Christopher Brown3,Gillian Ison3,Maliha F Shaikh4,Anoop Kuttikat4,William A...
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