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Austria: Petition: ME / CFS: Recognition, Medical Care and Protection of the Affected, and Research Funding, closes 22 Nov 2021

Discussion in 'Petitions' started by Andy, Nov 5, 2021.

  1. Andy

    Andy Committee Member

    Messages:
    17,128
    Location:
    Hampshire, UK
    I'm relying on Google translation here, if any errors are spotted please let me know.

    Quote:

    Myalgic Encephalomyelitis / Chronic Fatigue Syndrome - ICD-10 G93.3

    ME / CFS is a severe multi-system disease that currently affects between 26,000 and 80,000 people in Austria [1]. Depending on its severity, the disease leads to severe physical limitations and loss of ability to work for most of those affected. Despite the high number of people affected and the severity of the disease, ME / CFS is little known, insufficiently researched and those affected are poorly cared for in the health and social system.

    requirements

    This petition calls on Austrian politicians to support those affected by ME / CFS in four areas: 1. Information and education, 2. Development of medical treatment and care structures, 3. Social security and 4. Research funding. A working group is to be formed to implement the requirements and to carry out ongoing evaluations.

    1. Information and education

    • Information, education and training of Austrian doctors and health staff according to the current state of research in order to create awareness and expertise in dealing with ME / CFS, to reduce the currently long time span of 5-8 years until receipt of the diagnosis and outdated dogmas to eliminate
    • Inclusion of ME / CFS in the curricula of the Austrian medical universities in order to improve the supply situation in the long term
    • Public awareness-raising campaign for society as a whole
    2. Development of medical treatment and care structures

    • Financing of public contact points for diagnosis, care and treatment of ME / CFS sufferers
    • Interdisciplinary connection of contact points to existing supply structures for the efficient use of existing resources and supply of ME / CFS affected persons in accordance with the current state of research
    • Securing the financing of the necessary examinations for the diagnosis of ME / CFS in the existing structures of the health system
    3. Social security for those affected

    • Targeted training of experts in the structures of the social insurance agencies and the Ministry of Social Affairs service for the recognition of ME / CFS diagnoses for benefit claims
    • Creation of care and support places for people severely affected by ME / CFS
    • Targeted use of existing as well as expansion of flexible options for keeping slightly affected ME / CFS patients in the labor market
    4. Research funding

    • Funding of research on ME / CFS to create treatment options and care for those affected using the latest scientific knowledge
    In order to implement these requirements, it is proposed that a working group should be formed which is not only entrusted with the implementation of the individual requirements in close cooperation with the Austrian Society for ME / CFS , but also takes on the ongoing evaluation of progress and measures taken.

    Link to petition, https://www.openpetition.eu/at/peti...ng-von-betroffenen-sowie-forschungsfoerderung

    The Google translate version of the page didn't seem to allow signatures, so I haven't given that link.
     
    Last edited by a moderator: Nov 5, 2021
  2. Solstice

    Solstice Senior Member (Voting Rights)

    Messages:
    519
    Signed, this one is a lot easier than the German one to sign.
     
    MSEsperanza, sebaaa, Dolphin and 10 others like this.
  3. Florence

    Florence Senior Member (Voting Rights)

    Messages:
    107
    Location:
    London, UK
    Done. That was very easy!
     
  4. MeSci

    MeSci Senior Member (Voting Rights)

    Messages:
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    Location:
    Cornwall, UK
    I've signed it too.
     
  5. alktipping

    alktipping Senior Member (Voting Rights)

    Messages:
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  6. Sean

    Sean Senior Member (Voting Rights)

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    Location:
    Australia
  7. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    10,011
    Location:
    UK West Midlands
    Despite being filtered through google translate this is a well constructed petition concentrating on communicating clear demands rather than falling the trap of going into chapter and verse that unfortunately some ME petition writers fall into.
     
    Lisa108, MSEsperanza, Ariel and 9 others like this.
  8. Andy

    Andy Committee Member

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    Hutan, MSEsperanza, Ariel and 9 others like this.
  9. NelliePledge

    NelliePledge Moderator Staff Member

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    Location:
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    Hopefully the organisers are in touch with the organisers of the German petition to get some ideas on promotion
     
    Hutan, MSEsperanza, Ariel and 7 others like this.
  10. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Messages:
    750
    Location:
    New Zealand
    Done earlier and chasing up a +1.
     
    Hutan, MSEsperanza, Joh and 5 others like this.
  11. Andy

    Andy Committee Member

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  12. Ariel

    Ariel Senior Member (Voting Rights)

    Messages:
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    Location:
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    Done and sent to friend in Austria (I hope they are not too bothered by it).
     
    sebaaa, Hutan, alktipping and 6 others like this.
  13. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    3,448
    I signed it but as the real focus is on people in Austria, I’ve concentrated on sharing German-language info on Twitter and Facebook (Facebook automatically translates it so not such an issue there). If one sticks the link info the Twitter search bar, one can find tweets that link to it.

    It is on course to be a little short, but could make it at a push. I might share an Instagram post in German: anyone know any?
    Edited to add: I found the CFShilfe account on Instagram.
     
    Last edited: Nov 16, 2021
    lycaena, Hutan, alktipping and 7 others like this.
  14. Ariel

    Ariel Senior Member (Voting Rights)

    Messages:
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    Location:
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    My friend in Austria has responded that she signed it and instead of ignoring me for spamming her as I feared she might (??); she also says she has passed it along to a few people, so hopefully that will add some signatures! :)
     
    lycaena, Hutan, Sean and 13 others like this.
  15. NelliePledge

    NelliePledge Moderator Staff Member

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    Location:
    UK West Midlands
  16. Dolphin

    Dolphin Senior Member (Voting Rights)

    Messages:
    3,448
    Looks like there are some paper signatures also:
    Code:
    https://www.facebook.com/CFSHilfe/posts/1371045363314532
     
  17. Ariel

    Ariel Senior Member (Voting Rights)

    Messages:
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    That's good news! I have been refreshing the vote count nervously.
     
  18. Joh

    Joh Senior Member (Voting Rights)

    Messages:
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    Location:
    Germany
  19. Andy

    Andy Committee Member

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    Hutan, MeSci, Joh and 3 others like this.
  20. Ariel

    Ariel Senior Member (Voting Rights)

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    864
    Location:
    UK
    There appear to only be 10 signatories from the UK according to the analytics? One person I know has promised to do it tomorrow! I know the non-Austria signatories aren't as important but it still seems worth doing!

    I have been watching the count and it seems to be rising today (the Austrian signatures) whereas it was a bit static. I am hopeful!

    xx
     
    sebaaa, Hutan, Joh and 4 others like this.

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