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International ME/CFS Conference of the Charité Fatigue Center on 11./12. May 2023 in Berlin, supported by the ME/CFS Research Foundation

Discussion in 'ME/CFS research news' started by FMMM1, Mar 24, 2023.

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  1. FMMM1

    FMMM1 Senior Member (Voting Rights)

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    FMMM1, Mar 24, 2023
    #1
    oldtimer, mariovitali, Pustekuchen and 7 others like this.
  2. Dolphin

    Dolphin Senior Member (Voting Rights)

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    Dolphin, Mar 24, 2023
    #2
    Hutan, Lisa108, Sean and 2 others like this.
  3. TiredSam

    TiredSam Committee Member

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    Location:
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    2nd International Meeting of the CFC - Charité Fatigue Center

    ME/CFS Conference 2023 - Understand, Diagnose, Treat

    Date:
    Thursday, May 11, 2023, 9 a.m. to 6 p.m.
    and Friday, May 12, 2023, 9 a.m. to 2 p.m

    https://www.medpoint-gmbh.de/me-cfs-conference-2023

    Link to Flyer / PDF on the registration website.



    No participation fees.
    The conference is intended for clinicians, scientists and interdisciplinary experts.
    We are looking forward to your participation!
     
    TiredSam, Apr 11, 2023
    #3
    merylg, mariovitali, Hutan and 5 others like this.
  4. Hutan

    Hutan Moderator Staff Member

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    Among the topics to be covered - some slightly concerning ones there:
     
    Hutan, Apr 12, 2023
    #4
    Ron, bobbler, shak8 and 1 other person like this.
  5. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

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    SNT Gatchaman, Apr 26, 2023
    #5
    Trish, Lindberg and Hutan like this.
  6. Solstice

    Solstice Senior Member (Voting Rights)

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    Solstice, Apr 27, 2023
    #6
    Kitty, SNT Gatchaman, Hutan and 2 others like this.
  7. Tia

    Tia Senior Member (Voting Rights)

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    I'm a bit confused by the website. Can patients sign up to listen to the talks online?
     
    Tia, Apr 30, 2023
    #7
    Kitty, Trish and Perrier like this.
  8. Milo

    Milo Senior Member (Voting Rights)

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    2,138
    Yes, you register, and they will send you a link to broadcast. It’s free. The line-up of presentation is very interesting, however the time change is very unfavourable to me.
     
    Milo, May 4, 2023
    #8
    Kitty, Trish, Hutan and 1 other person like this.
  9. Trish

    Trish Moderator Staff Member

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    It does look interesting. Tempting to sign up and try to follow some of it online if it's in English, but I do find such things exhausting. Maybe I'll manage some of it but I can't promise to take any notes or be able to say anything coherent afterwards.

    Is anyone else able to watch it?

    Is there any indication of how much will be in German and how much in English?
     
    Trish, May 8, 2023
    #9
    MEMarge, bobbler, Kitty and 2 others like this.
  10. Pustekuchen

    Pustekuchen Established Member (Voting Rights)

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    They said that all presentations and discussions will be held in English.
     
    Pustekuchen, May 8, 2023
    #10
    MEMarge, RedFox, bobbler and 3 others like this.
  11. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Sly Saint, May 8, 2023
    #11
    MEMarge, Fizzlou, Kitty and 1 other person like this.
  12. Kitty

    Kitty Senior Member (Voting Rights)

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    To me, the most interesting part is the afternoon of Day 1. It's still three and a half hours, but there's about a half-hour break.

    What I've done with online conferences in the past is to listen to the first few minutes of each presentation, and see whether I'm taking in what the person's saying. If I'm not, I turn the sound off, take a break, and start again with the next one. It often depends as much on the person's presentation style as the accessibility of the topic—but there's no point giving myself headache trying to understand a short, information-packed presentation that I might be able to read about at leisure later.
     
    Kitty, May 8, 2023
    #12
    ukxmrv, Simone, Binkie4 and 5 others like this.
  13. Trish

    Trish Moderator Staff Member

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    Good advice, thanks Kitty. I found when I did some of the reporting for the forum for the IACFSME conference last year that note taking was a killer. And I agree when they present complex information fast or speak with an accent my less than perfect hearing can tune into, I'm sunk. If I do attend I'll pick and choose carefully and not make any promises about reporting. If they'd publish conference abstracts that would be great.
     
    Trish, May 8, 2023
    #13
    Simone, MEMarge, bobbler and 2 others like this.
  14. Trish

    Trish Moderator Staff Member

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    I have registered. For once I actually read the terms and conditions before signing on. Note it says screenshots and recording are prohibited.
    Now all I need to do is remember it's on and the time difference.
    And of course wait to see if they accept my registration.
     
    Last edited: May 8, 2023
    Trish, May 8, 2023
    #14
    ukxmrv, MEMarge, RedFox and 3 others like this.
  15. belbyr

    belbyr Established Member (Voting Rights)

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    What is concerning to you?
     
    belbyr, May 8, 2023
    #15
  16. Trish

    Trish Moderator Staff Member

    Messages:
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    The treatment section on Friday Hutan expressed concerned about now reads:
    ____________________

    Treatment I

    Chairs: Luis Nacul (Canada) Andrea Maier (Germany)

    09:00 Treating ME/CFS – State of the Art Luis Nacul

    09:20 Multiprofessional Inpatient ME/CFS Treatment Johannes-Peter Haas

    09:35 Neuromodulation in ME/CFS Michael Stingl

    09:55 Medical Care Situation and Stigma with ME/CFS Laura Froehlich

    10:10 Psychological Support in ME/CFS Bettina Grande
    ______________

    Treatment II

    Chairs: Olav Mella (Norway) Harald Pruess (Germany)

    11:00 B and Plasma Cell Targeting in ME/CFS Øystein Fluge

    11:20 Immunoadsorption in Severly Affected ME/CFS Patients Wolfgang Ries

    11:40 Immunoadsorption in PCS and ME/CFS Elisa Stein

    11:55 Treating Orthostatic Intolerance in ME/CFS Andrea Maier

    12:10 Vascular Targeting in ME/CFS Klaus Wirth
    __________________

    My concern would be that we haven't seen clinical trial evidence supporting any of these treatments, so unless they are going to report progress or completion of a clinical trial, they may have little evidence to present. I hope they make that clear and don't just talk about what they do with patients and make unsubstantiated claims. We'll see.

    I hope others will sign up and report back.
     
    Trish, May 8, 2023
    #16
    Simone, Milo, MEMarge and 7 others like this.
  17. Hutan

    Hutan Moderator Staff Member

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    Most of those are looking fine and very interesting. I look forward to hearing about them.
     
    Hutan, May 8, 2023
    #17
    ukxmrv, RedFox, Kitty and 1 other person like this.
  18. Helene

    Helene Senior Member (Voting Rights)

    Messages:
    199
    Am very interested in a report from this 20 minute presentation by Luis Nacul on Friday. Unfortunately I won't be able to catch it as it's at 1 AM for me in Western Canada.

    Don't have the energy to go into a lot of detail now but am finishing the year long Complex Chronic Disease Program out of Vancouver which Luis Nacul heads and still trying to figure out why Central Sensitivity Syndrome remains a part of the program.

    Thanks in advance if anyone is able to pass on the general gist of the presentation!
     
    Helene, May 8, 2023
    #18
    Milo, MEMarge, Hutan and 5 others like this.
  19. mariovitali

    mariovitali Senior Member (Voting Rights)

    Messages:
    516
    Flying tomorrow to Berlin to attend the conference. I am very excited as I will be able to talk in person with some researchers and -hopefully- collaborate.

    Specific talks are on my radar and of course I look forward to hearing Dr Prusty
     
    mariovitali, May 9, 2023
    #19
    ukxmrv, Starlight, merylg and 21 others like this.
  20. Trish

    Trish Moderator Staff Member

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    It would be interesting to hear more about that sometime on a new thread when you have the energy.
     
    Trish, May 9, 2023
    #20
    ukxmrv, Helene, Joh and 5 others like this.
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