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Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!, 2021

Discussion in 'Petitions' started by Andy, Oct 14, 2021.

  1. Joh

    Joh Senior Member (Voting Rights)

    Messages:
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    Location:
    Germany
    Announcement by the team #SIGNforMECFS.

    Prof. Scheibenbogen from the Charité will also take part.



    Edited to add translation of the Facebook post:
     
    Last edited: Feb 14, 2022
    MSEsperanza, Willow, rvallee and 11 others like this.
  2. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,234
    The petitioner gave a very good speech, quickly describing the level of impairment and desperation of patients, the unbelievable neglect, psychologization, and economic impact. Also the expectation that cases will rise substantially due to the pandemic.

    The petitioner said that his disability benefits assessor burst out into laughter when he heard the diagnosis ME/CFS.

    The petitioner was asked what action could be taken that would quickly lead to improvement, and he suggested an education campaign.

    Prof. Scheibenbogen was also very good and said that as long as most doctors think this is a trivial or psychosomatic illness nothing will change.

    There was more, on research, clinics, etc.

    I wasn't able to watch everything but the impression is that everything that needed to be said has been said.
     
    Last edited: Feb 14, 2022
  3. Joh

    Joh Senior Member (Voting Rights)

    Messages:
    943
    Location:
    Germany
    The German ME/CFS Association has published an article on the hearing with further links (German):
    https://www.mecfs.de/anhoerung-petition/

    Automatic English translation of the article:
    https://www-mecfs-de.translate.goog..._sl=de&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=wapp

    Transcript of the hearing (German): https://www.mecfs.de/wp-content/uploads/2022/02/Transkript_Anhörung_Petition_SIGNforMECFS.pdf

    Five minute opening statement by petitioner (and pwME) Daniel Loy. He participated in the hearing via video call:

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




    A video of the one-hour hearing in the Bundestag (automatic English subtitles can be turned on at the small wheel at the bottom right). The video can't be embedded here and has to be watched directly on YouTube:

    https://www.youtube.com/watch?v=RdIAqLD0tds


     
    diwa, Kalliope, lycaena and 7 others like this.
  4. Joh

    Joh Senior Member (Voting Rights)

    Messages:
    943
    Location:
    Germany
    I found the opening statement, for which there was only 5 minutes, an excellent summary and introduction. So here is an English translation:

     
  5. Trish

    Trish Moderator Staff Member

    Messages:
    51,884
    Location:
    UK
    That's a very powerful speech.
     
  6. Joh

    Joh Senior Member (Voting Rights)

    Messages:
    943
    Location:
    Germany
    Before the hearing started, over 230 messages from pwME and their loved ones were handed over to the committee members. This had to be done by the 16-year-old daughter of a petitioner, as the petitioners themselves are too severely affected to be there.


    [​IMG]
     
    Last edited: Feb 24, 2022
    sebaaa, Fizzlou, cfsandmore and 12 others like this.
  7. Dolphin

    Dolphin Senior Member (Voting Rights)

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    <deleted>
     
    Last edited: Feb 24, 2022
    Peter Trewhitt likes this.

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