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ME/CFS conference in Hamburg, Germany, June 22 2019

Discussion in 'BioMedical ME/CFS News' started by Joh, Jun 22, 2019.

  1. Joh

    Joh Senior Member (Voting Rights)

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    A ME/CFS conference takes place in Hamburg, Germany today. It's organized by the German Association for ME/CFS (their first conference).

    The conference is aimed at medical professionals and pwME. It's accredited for Continuing Medical Education (CME).


    Program

    - PD Dr. med. Patricia Grabowski
    Charité Berlin - Institute for Medical Immunology
    "Chronic Fatigue Syndrome - Diagnostics, Therapy, and Research."

    - Dr. med. Andrea Maier
    Aachen University Hospital - ANS Outpatient Clinic
    "Circulatory Disorders in ME/CFS"

    - Workshops:
    Advocacy
    Self-help / exchange of experiences

    - Joachim Laux
    Specialist lawyer for medical law and insurance law
    "ME/CFS in legal disputes using the example of private disability insurance"

    - Prof. Dr. med. Uta Behrends
    Children's Hospital Munich Schwabing / Technical University Munich
    "Munich Register for Children, Adolescents, and Young Adults with postinfectious CFS."

    - Panel discussion with the German Asscoiation, the Lost Voices Foundation and #MillionsMissing Germany


    More info
    https://www.mecfs.de/me-cfs-forum-2019-hamburg/
    https://www.mecfs.de/wp-content/uploads/2019/04/MECFS-Forum-Flyer-Juni-2019.pdf
     
    Leila, TiredSam, lycaena and 24 others like this.
  2. Perrier

    Perrier Senior Member (Voting Rights)

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    Whoever goes to this conference ought to pose the question: how often is electroshock being used in Germany to 'treat' CFS/ME, and should it not be stopped? Thank you.
     
  3. Joh

    Joh Senior Member (Voting Rights)

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    I'm the last person to defend the German healthcare system when it comes to ME (or chronic tiredness syndrome, as it's called here) – it's horrendous. But pwME are not treated with electroshock therapy, haven't heard of a single case.
     
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  4. MeSci

    MeSci Senior Member (Voting Rights)

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    I'd be interested in hearing about circulatory disorders in ME/CFS, if they include hypertension.
     
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  5. Perrier

    Perrier Senior Member (Voting Rights)

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    Dear Joh,
    If you read my posts in the other thread about my meeting with a physician who practices in Germany for many years, and who used this treatment for fatigue, you will learn that it has been used. And not only in Germany, but in neighbouring countries too. This physician prescribed this treatment and strongly recommended it to us.
     
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  6. mango

    mango Senior Member (Voting Rights)

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    ECT is sometimes used in Sweden too, to treat people with ME diagnosis :wtf::cry: Even young people (last one I read about is 18-19 years old). Patients are being told it will help with fatigue, memory issues, brain fog, sleep and/or that it will "kickstart" the immune system, among other things... In other words, they are recommended or urged to undergo ECT even in the absence of depression or other psychiatric diagnoses/issues. Sadly most pwME seem to be made much worse by it, both short- and long-term, ME symptoms/deterioration as well as the usual adverse effects expected with ECT, according to the comments I've read in various Swedish discussion groups. It's the stuff of nightmares...
     
    Last edited: Jun 24, 2019
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  7. JES

    JES Senior Member (Voting Rights)

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    I have never heard of anyone getting ECT in Nordic countries specifically as treatment for G93.3 ME/CFS diagnosis. From my experience and reading stories of others, it is almost impossible to get any ME/CFS treatment in Nordic countries other than CBT/GET. Maybe they are giving ECT under some made up psychiatric diagnosis like neurasthenia or conversion disorder.
     
    Last edited: Jun 24, 2019
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  8. mango

    mango Senior Member (Voting Rights)

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    If you hang out in Swedish ME groups online you will from time to time see posts saying things like "When I got diagnosed with ME by a doctor in [city], I was offered ECT [...]". It's not a one-off, it happens in several different parts of the country, and it has been happening for many years.
     
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  9. Joh

    Joh Senior Member (Voting Rights)

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    I read the thread and I have no answer why this physician claims that it's a "standard treatment" for ME in Germany. My only explanation would be that he thinks ME is a severe psychosomatic/psychiatric condition (what wouldn't be too surprising).

    I've searched through German ME forums/groups and found so far a single pwME in the last 10+ years who had this "treatment" (but there was no additional info on the background or possible comorbidities of this patient). I'm not defending the system in Germany at all, I've been severely psychologized b/c of ME myself and wouldn't be surprised at anything that goes on in this area – just can't find anything on ETC and ME regarding Germany (apart from the one pwME mentioned above).

    Thanks for the info, that's unsettling!
     
    MSEsperanza, lycaena, MEMarge and 4 others like this.
  10. Trish

    Trish Moderator Staff Member

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    Hi @Joh, Thanks for sharing the information about the conference. It looks like a good range of speakers. Is there any news of how it went?
     
    MSEsperanza, rvallee, MEMarge and 2 others like this.
  11. Joh

    Joh Senior Member (Voting Rights)

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    From what I've heard so far from participants it went really well (I wasn't there as I'm homebound). It was fully booked and several doctors attended. Apparently the topics were a good mix of science, advocacy and practical stuff. PwME, carers, doctors, scientists and patient advocates were able to discuss together and there was motivation to work together and change things.

    I like that there were loungers on a gallery where pwME could also listen to the talks while lying down.

    The next day was a meeting of the members, so everybody is a little crashed right now after a long weekend and I haven't heard much myself. When more infos will be published I'm happy to share them here. :)
     
  12. Perrier

    Perrier Senior Member (Voting Rights)

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    Dear Joh

    I don't know what to say; some doctors we saw in Germany are really OK and very sympathetic. However, all I was trying to do was to report what happened and how shocked I was. I was told that young people received the ECT and they were able to go back to school, thereafter. I suspect (without any proof but my own inner hunch) that the physician did somehow believe that this was a psychiatric condition. I posted this because I am appalled about the harm done to young people. And I wanted folks to be aware of this and to somehow raise it and put a stop to it. Best wishes
     
  13. Joh

    Joh Senior Member (Voting Rights)

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    Thank you! Will keep my eyes open regarding this topic. Best wishes to you and your family member with ME!
     
  14. Joh

    Joh Senior Member (Voting Rights)

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    First pictures and a short summary.

     
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  15. Joh

    Joh Senior Member (Voting Rights)

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    Last edited: May 14, 2020

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