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Opening of the "Charité Fatigue Centre"

Discussion in 'General ME/CFS news' started by Andy, Mar 22, 2019.

  1. Andy

    Andy Committee Member

    Messages:
    21,914
    Location:
    Hampshire, UK
    Facebook translate has supplied the English text
    Code:
    https://www.facebook.com/dg.mecfs/posts/533015563773180
     
    MEMarge, DokaGirl, petrichor and 17 others like this.
  2. Rick Sanchez

    Rick Sanchez Senior Member (Voting Rights)

    Messages:
    155
    To the people living in Germany, what is your take on Deutsche Gesellschaft für ME/CFS?

    From an outside perspective it looks like they have been doing a very good job, but would love to hear how people in Germany view them!
     
    MEMarge, DokaGirl, diwa and 3 others like this.
  3. Trish

    Trish Moderator Staff Member

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    52,225
    Location:
    UK
    Looks like a good development. What does ismal mean?
     
    MEMarge and DokaGirl like this.
  4. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

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    13,463
    Location:
    London, UK
    Looking at Google, nothing much, except that it is a place on the Danube.
     
    MEMarge, DokaGirl and Trish like this.
  5. Hoopoe

    Hoopoe Senior Member (Voting Rights)

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    5,252
    It's a translation error. It says "aim of the new centre is ..." in the original.
     
  6. Andy

    Andy Committee Member

    Messages:
    21,914
    Location:
    Hampshire, UK
    I agree, have edited the title to remove "ismal" and replace with "centre".
     
    MEMarge, DokaGirl and Wonko like this.
  7. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,252
    This will be a centre that will research fatigue in various illnesses, find biomarkers, carry out treatment studies, and produce educational material. The document names cancer, ME, and neurological disease.
     
    andypants, MEMarge, Tilly and 9 others like this.
  8. Inara

    Inara Senior Member (Voting Rights)

    Messages:
    2,734
    I am a bit divided on this.

    I think it's great there is now a center that will house ME/CFS. It's unique in Germany, and it's the right step. They offer a 2-day-CPET following the protocols from publications. It subsumes cancer and MS related fatigue as well, but also a psychosomatic clinic.

    The connection of CFS with "fatigue" isn't very advantageous in my view.

    Also, the CFS part of the center is still closed to everyone outside of Berlin/Brandenburg, so most Germans cannot go there. Indeed, my impression is the knowledge about ME in Berlin is best compared to the rest of Germany, and the care for people with ME is also much better than elsewhere (but still not really good). It also seems people with ME have a slightly better access to disability benefits due to better knowledge of doctors about ME.

    The DG for ME/CFS is maybe the best alternative in Germany right now. They supply great information about ME, also for doctors, with a focus on research. They do their best, but often seem overloaded.

    So I'd say it's a good development, but the situation in Germany is still a disaster.
     
    andypants, TiredSam, MEMarge and 13 others like this.

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