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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

    Messages:
    53,394
    Location:
    UK
    This conference is happening now. You have to sign up for it. I don't know whether you can still do so while it's happening. I have just started watching 2 hours into the first day, with Carmen Scheibenbogen speaking. Mostly I expect to catch up with talks when they are posted on the website afterwards. I'm not going to attempt to take notes.
     
    Trish, May 15, 2024
    #41
    Ash, bobbler, MEMarge and 8 others like this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    53,394
    Location:
    UK
    Just watched Rob Wust. Very impressive. He has learned more about PEM and the difference between PEM and deconditioning in ME/CFS than the BACME and BPS people have learned on 30+ years. He specifically said the role of physical therapists should only be to help pwME stay below their PEM threshold with symptom and time contingent pacing. He says he also studies people on bed rest for other reasons and they are completely different and don't get PEM.
    He has plans for future research.
     
    Trish, May 15, 2024
    #42
    MelbME, jaded, Ash and 37 others like this.
  3. Grigor

    Grigor Senior Member (Voting Rights)

    Messages:
    548
    Grigor, May 15, 2024
    #43
    Ash, rainy, Deanne NZ and 11 others like this.
  4. Trish

    Trish Moderator Staff Member

    Messages:
    53,394
    Location:
    UK
    They are now having a half hour lunch break. During the break they have people with LC and ME/CFS from different countries sharing their comments and experiences.
    So far the conference is very professionally run, with all talks running strictly to time with a bit of time for questions after each talk. I'm impressed.

    Next section will be 3 speakers on the patient persective.
     
    Trish, May 15, 2024
    #44
    Ash, MEMarge, Joan Crawford and 22 others like this.
  5. Yann04

    Yann04 Senior Member (Voting Rights)

    Messages:
    534
    Location:
    Switzerland (Romandie)
    Glad to hear it is going so well!
     
    Yann04, May 15, 2024
    #45
    Ash, MEMarge, Joan Crawford and 6 others like this.
  6. Sasha

    Sasha Senior Member (Voting Rights)

    Messages:
    3,797
    Location:
    UK
    Thanks so much for bringing this conference to our attention, @Trish - sounding excellent so far!
     
    Sasha, May 15, 2024
    #46
    MEMarge, Joan Crawford, Sean and 4 others like this.
  7. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,919
    Location:
    Canada
    Actually if anyone is hesitating, no need to sign up really, it just asks for a name and email and you're good to go. Easy peasy.
     
    rvallee, May 15, 2024
    #47
    MEMarge, EzzieD, Joan Crawford and 7 others like this.
  8. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    12,919
    Location:
    Canada
    If you're still on xitter, it'd be good to share at least 1-2 things about the conference.

    It keeps on being demoralizing how few people respond, but it's leaving a record of what was known at the time, how much effort a few renegades were able to push through the indifference of the profession.
     
    rvallee, May 15, 2024
    #48
    Ash, EzzieD, Joan Crawford and 10 others like this.
  9. LJord

    LJord Senior Member (Voting Rights)

    Messages:
    182
    I’m watching Todd Davenport's presentation and he just addressed Effort Preference. He believes his test clarifies that this is NOT happening. CPET test.
     
    Last edited: May 15, 2024
    LJord, May 15, 2024
    #49
    Ash, Lidia Thompson, EzzieD and 18 others like this.
  10. John Mac

    John Mac Senior Member (Voting Rights)

    Messages:
    958
    From an email:

    David Tuller's Trial by Error Project Update: "How Long Covid Researcher Are Repeating the ME/CFS Playbook"
    That's the title of my talk at the UniteToFight online gathering at 5 PM Thursday in Central European Time--that's 8 AM Thursday morning in San Francisco (where I'll be). The gathering began today--Wednesday. You can still register for it here.

    And if you'd like to donate to the May crowdfunder for Trial By Error, you can do so here:

    https://crowdfund.berkeley.edu/project/42302
     
    John Mac, May 15, 2024
    #50
    Ash, EzzieD, Joan Crawford and 11 others like this.
  11. tmrw

    tmrw Established Member (Voting Rights)

    Messages:
    58
    Location:
    Germany
    I haven't watched much, but one interesting side note Wes Ely made in the Q&A in regards to the Baricitinib Trial is, that they will be using ME/CFS questioners as well.
     
    tmrw, May 16, 2024
    #51
    Ash, MEMarge, Solstice and 3 others like this.
  12. Trish

    Trish Moderator Staff Member

    Messages:
    53,394
    Location:
    UK
    The second day of the conference is under way. As yesterday, I missed the first part. They are now doing a series on the experience of Long Covid, and stigma.
     
    Trish, May 16, 2024
    #52
    Ash, MEMarge, Missense and 5 others like this.
  13. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Messages:
    4,874
    Location:
    Aotearoa New Zealand
    Psychiatrist Prof. Georg Schomerus - what an absolute star :trophy@ He's like Chat-GPT 5000 trained on S4ME, brought to life.
     
    SNT Gatchaman, May 16, 2024
    #53
    MEMarge, pooriepoor91, EzzieD and 18 others like this.
  14. Trish

    Trish Moderator Staff Member

    Messages:
    53,394
    Location:
    UK
    Very good talk by Sayoni Das from Precision Life. She showed some analyses of data on ME/CFS from the UK Biobank, and some Long Covid data, and they are looking forward to getting the DecodeME data to analyse.
     
    Trish, May 16, 2024
    #54
    lycaena, MEMarge, EzzieD and 14 others like this.
  15. Sean

    Sean Moderator Staff Member

    Messages:
    7,488
    Location:
    Australia
    May have already been asked, but will all this be available on YouTube, etc, later?
     
    Sean, May 16, 2024
    #55
    ukxmrv, Missense, Binkie4 and 6 others like this.
  16. Yann04

    Yann04 Senior Member (Voting Rights)

    Messages:
    534
    Location:
    Switzerland (Romandie)
    hahhahahah brilliant
     
    Yann04, May 16, 2024
    #56
    Missense, Joan Crawford, Solstice and 3 others like this.
  17. Yann04

    Yann04 Senior Member (Voting Rights)

    Messages:
    534
    Location:
    Switzerland (Romandie)
    Yes. Don’t know where but it will be available.
     
    Yann04, May 16, 2024
    #57
    MEMarge, Missense, Sean and 6 others like this.
  18. Trish

    Trish Moderator Staff Member

    Messages:
    53,394
    Location:
    UK
    The email says they will be on You Tube.
     
    Trish, May 16, 2024
    #58
    MEMarge, EzzieD, Missense and 8 others like this.
  19. FMMM1

    FMMM1 Senior Member (Voting Rights)

    Messages:
    2,761
    I watched some of the PrecisionLife presentation - some genes common i.e. ME/CFS & long COVID. I'm guessing the presentation was substantially the same as the one at the recent NIH Genetics Roadmap webinar?
    Pathways/genes related to sleep - are NIH funding trials on sleep medications i.e. in ME/CFS?
     
    FMMM1, May 16, 2024
    #59
    Ash, MEMarge, Missense and 4 others like this.
  20. Trish

    Trish Moderator Staff Member

    Messages:
    53,394
    Location:
    UK
    Bhupesh Prusty is on now talking about his work on fibronectin. I'm too knackered to concentrate any more, so will have to catch up later.
     
    Trish, May 16, 2024
    #60
    MEMarge, Missense, Peter Trewhitt and 7 others like this.
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