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UniteToFight2024 Long Covid and ME/CFS conference, 15th and 16th May 2024

Discussion in 'ME/CFS research news' started by Dolphin, Feb 4, 2024.

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  1. Trish

    Trish Moderator Staff Member

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    Trish, Jun 5, 2024
    #81
    Lou B Lou, Ash, Peter Trewhitt and 9 others like this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    55,981
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    By email:

    Dear participant,
    We are excited to announce that we are now uploading the complete series of UniteToFight2024 conference videos to our YouTube channel! Relive the insightful sessions and catch any moments you might have missed, all at your convenience.

    Our YouTube channel is online!
    To ensure you don't miss any new content, we invite you to subscribe to our YouTube channel:

    UniteToFight on YouTube
    We will be releasing the videos chronologically, providing you with continuous insights and discussions from the conference.

    Help us enhance accessibility
    We are actively seeking volunteers to help adjust and translate subtitles and transcripts for these videos in English, German, French, and Spanish. If you can assist, please email us at marketing@unitetofight2024.world with your Twitter handle (if existent) and the language(s) you can contribute to. Your support is crucial in making these resources more accessible to a global audience.

    We need your feedback
    Your feedback is invaluable to us. Please take a few moments to complete our questionnaire after watching the videos. It takes about 8–12 minutes to complete and will help us gather essential feedback on the conference and understand the demographics of our participants. Your input will enable us to provide even better content and events in the future.

    Complete the survey
    Connect with us on social media
    For more updates and to join our community discussions, please follow us on our social media platforms:



    By following us, you'll stay informed about our initiatives and future events, and you'll help spread the word about our collective efforts to combat LongCovid and ME/CFS.



    We look forward to staying connected and continuing our journey together. Thank you for your support, participation, and for being an integral part of our community!

    – The UniteToFight2024 Team
     
    Trish, Jun 5, 2024
    #82
    Ash, Peter Trewhitt, Lou B Lou and 8 others like this.
  3. Amw66

    Amw66 Senior Member (Voting Rights)

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    6,818
    Amw66, Jun 6, 2024
    #83
    MEMarge, Ash, Peter Trewhitt and 10 others like this.
  4. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    (Australian) Senator Jordon Steele-John: Opening Speech YouTube | Transcript

     
    SNT Gatchaman, Jun 6, 2024
    #84
    Peter Trewhitt, obeat, Dolphin and 5 others like this.
  5. Mij

    Mij Senior Member (Voting Rights)

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    Mij, Jun 17, 2024
    #85
    Binkie4, Peter Trewhitt, rvallee and 6 others like this.
  6. forestglip

    forestglip Senior Member (Voting Rights)

    Messages:
    1,109
    forestglip, Jun 17, 2024
    #86
    Binkie4, Amw66, Peter Trewhitt and 6 others like this.
  7. Mij

    Mij Senior Member (Voting Rights)

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    9,754
    Right? It's like PEM is no longer this mystery or weird made up phenomena by pwME.
     
    Mij, Jun 17, 2024
    #87
    Binkie4, Peter Trewhitt, Amw66 and 5 others like this.
  8. Mij

    Mij Senior Member (Voting Rights)

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    9,754
    Mij, Jun 18, 2024
    #88
    Amw66, Peter Trewhitt, Murph and 8 others like this.
  9. Dolphin

    Dolphin Senior Member (Voting Rights)

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    5,950
    ME Research UK:

    On the 15th and 16th of May this year, ME Research UK attended the first Unite To Fight conference – “The biggest community-driven ME/CFS and Long COVID conference ever”, which was held online. During the conference, many areas of ME/CFS and long COVID research were discussed – within which, ME Research UK highlights five key topics:

    1. ME/CFS as a part of long COVID.

    2. The importance of appropriate involvement of those with lived experience in ME/CFS, and in long COVID research.

    3. Research – and lived experience, shows that post-exertional malaise is not a result of deconditioning.

    4. Stop saying “long COVID and ME/CFS are a mystery” – more specific research methods are needed.

    5. Long COVID research does not appear to be learning from ME/CFS research mistakes.

    Read more: https://bit.ly/UniteToFightConf

    Access the conference website here: https://bit.ly/46z4X9U

    Watch recorded conference sessions here: https://bit.ly/3WBlMfH

     
    Dolphin, Aug 6, 2024
    #89
    Hutan, Lou B Lou, obeat and 2 others like this.
  10. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    For those that missed him live, his talk is now on YouTube

    https://www.youtube.com/watch?v=xx8rV2YeIj8


     
    SNT Gatchaman, Sep 3, 2024
    #90
    Binkie4, Amw66, geminiqry and 7 others like this.
  11. Sasha

    Sasha Senior Member (Voting Rights)

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    Location:
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    Anybody know if what is being proposed is a drug to prevent PEM (by tackling some underlying mechanism that limits our activity) or a drug to mask PEM after it has kicked in (like taking a painkiller for a headache)?
     
    Sasha, Sep 3, 2024
    #91
    Binkie4, Lou B Lou, forestglip and 3 others like this.
  12. V.R.T.

    V.R.T. Senior Member (Voting Rights)

    Messages:
    268
    It would be very interesting to know more about this drug.
     
    V.R.T., Sep 3, 2024
    #92
    Lou B Lou, Sasha, Ash and 1 other person like this.
  13. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
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    I'm wondering if it might even be a bad idea if it masks a symptoms that's a useful guide to not overdoing it.
     
    Sasha, Sep 3, 2024
    #93
    Binkie4, Sean, Mij and 4 others like this.
  14. V.R.T.

    V.R.T. Senior Member (Voting Rights)

    Messages:
    268
    Absolutely, I find ibuprofen for example masks symtoms (esp when i was mild) and leads to crashes if I'm not careful.

    But you would assume that they are talking about a drug that will stop/lessen this mechanism of damage that their study seems to identify rather than one that lets it go on whilst making you feel better.

    Anyway I'm very interested in this hypothesis and hope they say more about this and start a trial soon.
     
    V.R.T., Sep 3, 2024
    #94
    Hutan, Sean, Mij and 5 others like this.
  15. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    SNT Gatchaman, Sep 17, 2024
    #95
    Amw66, Peter Trewhitt and Deanne NZ like this.
  16. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Messages:
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    Dr. med. Michael Kacik: Vascular regulation disorder in Post COVID disease & MECFS (Day 2, Block 9)

    Discussing dysregulated microcirculation, orthostatic intolerance, nail-fold capillary changes, post-occlusion reactive hyperaemia.

    https://www.youtube.com/watch?v=6OYWuWCDfXY


     
    SNT Gatchaman, Sep 17, 2024
    #96
    Amw66, Peter Trewhitt and Deanne NZ like this.
  17. Hutan

    Hutan Moderator Staff Member

    Messages:
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    Location:
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    I agree, Prof Georg Schomerus seems to be an example of a good psychiatrist.

    I liked many of his points, one I remember is that medical professionals have been incentivised to make decisions quickly and get people out the door, rather than to exercise curiosity.
     
    Last edited: Sep 17, 2024
    Hutan, Sep 17, 2024
    #97
    Binkie4, MEMarge, Dolphin and 7 others like this.
  18. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Sep 25, 2024
    #98
    Amw66, Hutan, SNT Gatchaman and 3 others like this.
  19. bobbler

    bobbler Senior Member (Voting Rights)

    Messages:
    3,972
    I just watched the David Tuller video with Wust and it was very interesting (but might need to do it a few times as I miss bits). My ears pricked up around 34mins in he started mentioning this, and NASA.

    I think this pyjama paralysis mandate has become so ingrained (with simplistic storytelling knocking any nuance out) when people say or write 'not based on deconditioning' they hear 'just a little bit' or 'but of course it's not good to decondition, even if it's not the cause' or all sorts of other bargaining with that edict.

    And of course we all do it to ourselves, and are thinking what is 'the balance' so is suggestion of finding the PEM threshold is also fascinating.
     
    bobbler, Oct 13, 2024
    #99
    Sean, Binkie4, Dolphin and 3 others like this.
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