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Petition to Ministry of Health Germany

Discussion in 'Petitions' started by Jupiter, Apr 6, 2019.

  1. Jupiter

    Jupiter Established Member

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    Hi everyone, greetings from Germany

    the situation here in Germany is still pretty bad, even some MPs are now familiar or at least involved with ME/CFS organisations.
    The following petition still needs more signatures so we can make more pressure to the Health Ministry.... its all in german but it covers the basic issues like more funding, clinical care....

    On the right you have to enter your first name, second name and E-mail then press the red button -> "Petition unterschreiben"

    Hope we get some more signatures !!!

    Thanks

    https://www.change.org/p/jens-spahn-bundesminister-für-gesundheit-bmg-wir-wollen-unser-leben-zurück
     
  2. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I will share it with friends and contacts in Germany, can non Germans sign too?
     
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  3. Andy

    Andy Committee Member & Outreach

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    Is anyone able to provide a translation into English for the text of the petition? Obviously I could do a Google translation but something checked by a fluent speaker of German would be appreciated.
     
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  4. Inara

    Inara Senior Member (Voting Rights)

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    The petition is by Katharina Voss, and if I remember correctly it has been running for a while. 12.773 signatures is really good, but obviously more is needed (I think 50.000 for an evaluation by the petition committee?).

    The petition is addressed to Jens Spahn the German Health Minister.

    Here's my take on a translation (just a selection because there is a lot of text):

    My personal remark: Although there may be weaknesses, the petition addresses all problems that we have in Germany.
     
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  5. Jupiter

    Jupiter Established Member

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  6. Andy

    Andy Committee Member & Outreach

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  7. NelliePledge

    NelliePledge Senior Member (Voting Rights)

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    Signed and shared to local group
     
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  8. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Thank you, @Inara for providing a translation of the petition's basic demands and explaining the German abbreviations and terms. I would not have been able to do this ATM.

    One of the most annoying effects of having ME for me is not being able to participate properly in discussions, at least most of the time.

    This also is the case with advocacy work. I appreciate all people dedicating their time and energy to advocacy work for ME and wish I could participate more (I contributed more in the past when I was only mildly affected).

    I am not able to explain my criticism of the German petition at the moment, just thought it would be good to know at least the complete (indeed, very long) text of the petition and the linked material before promoting it. (And despite many valid and important points I'm concerned that this petition won't contribute to taking ME, pwME and their carers seriously).

    I couldn't watch the two videos linked in the second paragraph (introductory text to the petition), but had a quick glance at the second video.



    It contains an interview with Judy Mikovits. I didn't watch further, so I don't kno how the video portrays her research on retrovirals. The starter of the petition seems to approve this research, though.

    Some background about the starter of the petition: (scroll down for English version)

    http://meversuscfs.blogspot.com/search/label/Time for Truth – Zurück im Leben dank HIV-Medikament / Back to Life Due to an HIV Drug



    So, here are the other parts of the petition, translated by deepl: ( https://www.deepl.com/translator )
    (see following post)
     
    Last edited: Apr 7, 2019
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  9. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    So, here are the other parts of the petition, translated by deepl: ( https://www.deepl.com/translator )


     
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  10. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Part II
     
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  11. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Part III
    (edit: former version contained wrong paragraph -- now fixed)
    Translated with www.DeepL.com/Translator
     
    Last edited: Apr 7, 2019
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  12. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Only have energy left for one comment:

    I think the argument that labeling ME as a mental or psychiatric illness stigmatizes pwME is a bad one. It's true that mental/ psychiatric illnesses are still being stigmatized. This can IMO only be addressed by rejecting the stigma. To use the argument that the stigma is unjust for pwME does mentally ill people an injustice. What I think all patients and medical professionals have to object to is that a medical (including psychiatric/ mental illness) diagnosis per se can be a stigma, regardless which type of diagnosis it is. But what we have to fight against with regard to ME is to be given a wrong diagnosis because it is wrong, not because it's a psychiatric diagnosis.

    (Back to having a forum break :ill: )

    [edited for clarity]
     
    Last edited: Apr 7, 2019
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  13. Inara

    Inara Senior Member (Voting Rights)

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    She does.

    As I said, I think there are weaknesses. I don't agree with everything and I could critisize and call for changes. But I think the action is more important than being absolutely correct (in a scientifically sense) - we don't have much action in Germany. The demands are reasonable. The petition doesn't demand that ME be accepted to be a retroviral disease. I wouldn't have signed that. I can overlook imperfections in cases such as these. Sometimes we have to take what is offered - or make it better. And honestly, I can't. So taken everything together it's ok. Could be better, but could be worse too.

    I simply didn't have the energy to translate everything. It already was pretty much. :) Maybe someone else has the strength to do it.

    Edit: Oh thank you @MSEsperanza! :)
     
  14. Inara

    Inara Senior Member (Voting Rights)

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    For me, the center of the petition was around discrimination. I realize that everybody may read out something differently.

    Fact is ME is psychopathologized in Germany - see Henningsen at the 4th Columbia Psychosomatic Conference last year who said that CFS is a cultural phenomenom that is rare in Germany. See all the guidelines. See the replies to letters. And so on. I also thought about the choice of "psychopathologizing campaign", which might be difficult. Having Osler's Web in mind and the regular media campaigns, the latest one not long ago, "campaign" is correct. Considering who's leading that campaign and what the consequences are, I can agree with "psychopathologizing". One could discuss about the PR effectiveness of such words..But one shouldn't forget the bigger picture. If shortcomings and bigger picture have an OK balance, I can overlook the shortcomings. This is everybody's own decision.

    I agree that the stigma that goes with a psychiatric diagnosis needs to disappear. There are people who work on that, sadly without success. (Seems like the stigma wants to be kept...) But it is also (scientifically) incorrect to state as a fact that ME is psychiatric. And in Germany, that's how it is. For German politics ME IS psychosomatic. And for German politics, that comes with stigma AND false treatments.

    We mustn't fall into the trap that is laid by the "PACErs" - we have every right to say things clearly. We experience mistreatment, discrimination and a lot of harm. Most pwME get no disability help or fight like crazy for it, with the known consequences. We shouldn't be too fearful to say this, but be more confident.
    Just my personal opinion.

    Edit:
    I agree that needs to be made clearer. Sometimes I think that is so clear for pwME, that if they say "ME is not psychiatric" they actually say "we know it is biomedical" so "ME is psychiatric" is thought of as simply incorrect, not in the sense of "I don't want a psychiatric label" (which, considering the stigma problem, would be quite reasonable).
     
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  15. MSEsperanza

    MSEsperanza Senior Member (Voting Rights)

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    Former post/ part III contained wrong paragraph -- now fixed.
    Apologies for the confusion.
     
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