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  1. Hutan

    News from Canada

    Thank you @Helene.
  2. Hutan

    Opinion 'Long covid' and how medical information is causing illness: A philosophical issue affecting public health, 2023, Garner, Vogt

    Forum thread - Jama - Prevalence and Characteristics with Post-COVID-19 Condition Among Non-hospitalized Adolescents... - Selvakumar, Wyller et al, 2023 That paper, written by a large number of BPS proponents, had lots of problems. One was that they assumed negative tests equalled no SARS-CoV-2...
  3. Hutan

    Aotearoa New Zealand regional ME/CFS and Long Covid organisations

    This thread is for a list of sub-national Canadian ME/CFS and Long Covid organisations. National organisations are listed in ME/CFS and Long Covid charities/ organisations - International and National. MECFS Canterbury - info@mecfscanterbury.nz (Canterbury) Complex Chronic Illness Support -...
  4. Hutan

    Sweden regional ME/CFS and Long Covid charities/ organisations

    This thread is for a list of sub-national Swedish ME/CFS and Long Covid organisations. National organisations are listed in ME/CFS and Long Covid charities/ organisations - International and National. RME Dalarna Vastmanland RME Halland RME Jönköping RME Kalmar RME Kronoberg Blekinge RME...
  5. Hutan

    Canada regional ME/CFS and Long Covid charities/ organisations

    This thread is for a list of sub-national Canadian ME/CFS and Long Covid organisations. National organisations are listed in ME/CFS and Long Covid charities/ organisations - International and National. AQEM – Association québécoise de l’encéphalomyélite myalgique - https://aqem.org/ -...
  6. Hutan

    Australia regional ME/CFS and Long Covid charities/ organisations

    This thread is for a list of sub-national Australian ME/CFS and Long Covid organisations. National organisations are listed in ME/CFS and Long Covid charities/ organisations - International and National. ME/CFS/FM Support Association Queensland - http://www.mecfsfmq.org.au - mefmtba@bigpond.com...
  7. Hutan

    News from Canada

    Thanks very much @LarsSG. They have now been sent an email about the campaign.
  8. Hutan

    News from Canada

    Canadians, we are trying to work out what ME/CFS and Long covid organisations we should contact regarding the Cochrane Exercise Therapy Review campaign. Millions Missing Canada has signed. Thank you. Canada AQEM – Association québécoise de l’encéphalomyélite myalgique - we haven't had a...
  9. Hutan

    ME conference in Sweden 11-12th Oct 2023, The Hidden Disease

    I watched the Diane O'Leary presentation on the ethics around medical care for people with ME and LC. There was no mention of CFS, and not a whiff of retaining a CFS label for psychosomatic people. Perhaps some of the things said on this forum did make a difference. It seemed reasonable stuff...
  10. Hutan

    ME conference in Sweden 11-12th Oct 2023, The Hidden Disease

    I watched the Amy Proal presentation on viral persistence - just over 30 mins. It was well presented and easy to follow. Nothing new for people here I think, but there are some nice links to papers e.g. a list of all the Covid-19 papers finding viral persistence. One key idea is pathogens...
  11. Hutan

    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    It's possible that some of this has already happened, with the UK NIHR seeming to have stepped back a bit. I think I read somewhere, either directly or between the lines, in Cochrane's online material that their big announcement of 'patient-centred' stuff back in 2021 was in response to...
  12. Hutan

    Open ME Association: The UK ME/CFS Post Mortem Tissue Bank and Tissue Donation

    @RedFox Check out this thread: Post mortem tissue donation and autopsies (Members only) There's a post there about the US NIH NeuroBioBank. People can sign up to make a directive for tissue donation. It was mentioned on a NIH ME/CFS call.
  13. Hutan

    United Kingdom: ME Association news

    This is important, good on the MEA. It's a difficult thing to think about, especially given the relatively young upper age limit. Relevant threads: Post mortem tissue donation and autopsies ME Association: The UK ME/CFS Post Mortem Tissue Bank and Tissue Donation
  14. Hutan

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

    Here's the cumulative graph of petition numbers over time. You can see that numbers are still climbing steadily. 10,000 is the top line on the y axis scale. Given the substantial number of Canadian signatures (778), I think we should be able to get more organisations from there listed as...
  15. Hutan

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

    Thank you very much to RME Jönköping for signing the petition and supporting the campaign.
  16. Hutan

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

    We have posted this update on the petition: PETITION UPDATE 22 Oct: The office of the Editor-in-Chief replies OCT 21, 2023 — In our letter of 8th October addressed to the Chief Executive of Cochrane, we asked for "clear answers to the following questions: 1. Will the 2019 Larun review that...
  17. Hutan

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

    And more great news from Sweden, another organisation signing: RME Stockholm Thank you very much. With each organisation that signs I think of the people who care about this issue and want change. I find it very motivating. That brings us to 54 organisations. I wonder how many ME/CFS...
  18. Hutan

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

    Some more excellent news from Sweden - two more organisations signing: RME Väst #MillionsMissing Sweden Thank you to the advocates (Mango :thumbup:) involved in making that happen.
  19. Hutan

    Poor Reliability between Cochrane Reviewers & Blinded External Reviewers When Applying the Cochrane Risk of Bias Tool in Physical Therapy Trials,2014

    It does sound as though you are right: What can we learn from results of the RoB 2 comparison study?
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