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Millions Missing May 2018 - in Germany

Discussion in 'Advocacy Projects and Campaigns' started by Joh, Feb 10, 2018.

  1. Joh

    Joh Senior Member (Voting Rights)

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    Tübingen (or Stuttgart) sounds great and I also know someone in Tübingen who might take part. One point that might be worth to bedenken is, that the shoes and posters are in Hamburg, if we want to use them.
     
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  2. Andy

    Andy Committee Member & Outreach

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    I'd just like to add that both Joh and Inara have very kindly worked on translations for both of our researcher interactions so far and, hopefully obviously, we (S4ME) very much understand that volunteers energy levels can fluctuate dramatically. We always are very thankful for any efforts from patients and will always look to work within the limitations of any volunteer.
     
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  3. Joh

    Joh Senior Member (Voting Rights)

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    Yep, I'm in the same boat and the retirement money I'll have to fight for was estimated at 85 Euros a month by the Rentenversicherung. So I guess more fights with more Ämter will follow (Grundsicherung or whatever) and will continue for my life if we can't find a damn cure. It's such a nightmare that I desperately want to change things and spend every ounce of energy with writing and translating at the moment. I can't accept that this will be my life, begging at smug Ämtern.
     
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  4. Miri

    Miri Established Member (Voting Rights)

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    Oh Joh sorry to hear that. I guess you must be somewhat younger than me because 85 EUR is very little. I guess you just worked the 5 years to fulfill the requirements to apply for retirement.

    I highly appreciate that you spend your little energy for translation.

    I helped the LVS last you to comment on the Leitlinie for the degam. Now I cannot help them because I have to much brain fog to concentrate. I can only do light cognitive stuff at the moment.
     
  5. Miri

    Miri Established Member (Voting Rights)

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    What I wanted to add. Last year I wrote a letter to the Gesundheitsministerin Fr Steffens. She offered me a conversation in the second half of the year but the SPD and Grüne lost the election but I hope that her successor would may be talk to me.

    The problem is my bad health. I cannot leave the house for such thing.

    I even started a PowerPoint presentation about the current status of me/cfs to present this during the conversation.

    May be we can try a concerted action with volunteers here in NRW and ask for a conversation with people of the government in NRW. Research funding is a thing for the federal states.
     
    Last edited: Feb 12, 2018
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  6. Inara

    Inara Senior Member (Voting Rights)

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    And I would do it again and work with others.
     
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  7. Inara

    Inara Senior Member (Voting Rights)

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    @Joh, what you say about volunteering and understanding motivates me to reconsider it.
     
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  8. Inara

    Inara Senior Member (Voting Rights)

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    Would you be willing to share that for the case if I choose to try to meet local politicians?

    @Joh, you're right about the fact that all the stuff is in Hamburg. It's not problem to get posters here via post. It's about the shoes...How many shoes do they have again?
     
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  9. Miri

    Miri Established Member (Voting Rights)

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    The presentation is very rudimentary and consists also of Information from the LVS.

    May be I can share to you personally over a messenger?

    We could also do one altogether or adapt mine as a template for others to use.
     
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  10. Miri

    Miri Established Member (Voting Rights)

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    i guess we will find s solution with the shoes if we really decide to do a Millions missing action because we do need heathy volunteers anyway!
     
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  11. Miri

    Miri Established Member (Voting Rights)

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    Does this forum have a private messenger function?
     
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  12. Inara

    Inara Senior Member (Voting Rights)

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    Yes. Go to the top of the site and click "Inbox". Or click on the name of a member and choose "start a conversation".

    I am fine with creating a new presentation or a leaflet; the idea is just to use what we already have.

    And I agree - we'll somehow find a solution with the shoes. My question aimed at that. If it's not too many shoes, it can be sent and sent back. We'll somehow find the money for that, no?
     
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  13. Inara

    Inara Senior Member (Voting Rights)

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    Gladly. Either via eMail or Private Conversation. Thanks :)
     
  14. Joh

    Joh Senior Member (Voting Rights)

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    Not sure if the posters are just posters or maybe glued onto something. The website says 120 pairs of shoes, but in the video is said 150 (don't know which numbere is correct). I believe that we might be able to collect much more shoes by now. In 2016 Millions Missing was completely new and the Deutsche Gesellschaft was new, so people hesitated.

    Yes, but to find healthy volunteers to drive from Stuttgart to Hamburg to Stuttgart to Hamburg to Stuttgart (to collect the shoes and bring them back afterwards) might be more difficult (and costs money) than to find volunteers to help out locally.

    Another point to consider might be: We would also need people (or at least one person) who are comfortable with holding a speech. That's not easy and needs bravery to be the face of this stigmatized illness, being filmed etc. I like the idea with Tübingen/Stuttgart because I feel that there are several pwME. But if we chose a northern city (e.g. Berlin or others) maybe the Lost Voices Stiftung or DG would be willing to do a talk. (I have no idea if they would do that, just an idea, maybe if we would do the organizing, they'd like to support the event and take part).
     
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  15. Miri

    Miri Established Member (Voting Rights)

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    the thing with a speech and being in public is a important issue. I still have difficulties to go public.

    Another option is to get the LVS in the boat. Hannover is close to Hamburg. And may be it is easier to do.

    But Hannover is not Stuttgart. But anyway would be an option.

    I guess our friends in the Netherlands will do great again. Wonder if we could learn from them...
     
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  16. TiredSam

    TiredSam Moderator Staff Member

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    I'm not sure if I should resign from Fatigatio after all, because I think it would upset the friends I have made at my local group meetings. I only meet the other members every 2 months at the fatigatio meetings, and if I stopped going I wouldn't see them at all (it's quite a drive, none of them are local to me, and extending my social life isn't something I do these days).

    I'm not going to change Fatigatio from the inside, but I will continue to go to the group meetings, lecture them on pacing and listen to the horror stories.
     
    Last edited: Feb 26, 2018
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  17. Miri

    Miri Established Member (Voting Rights)

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    That sounds sad TiredSam. The thing is everyone can die at any time. The thing is can you live your life til the day you die or not. In case yes you are happy til the day you die. But a kind of bitterness creeps in oneself if one is so severly affected by ME just watching the world passing by and one knows one is not able to live one‘s life til the day one dies.

    I just went once to a self help group in 2013 and the stories were so terrifying that I could not go there a second time. I know ME stretches you to the limit but I missed that there was not a spirit of taking action just „complaining“ (the latter I can totally understand but sometimes to much energy is put in that field).
     
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  18. Lenny

    Lenny Established Member

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    Hello all,
    it's quite funny that I read on my very first visit on this forum about plans for an event in my hometown Tübingen. As much as I like the idea, I don't see how we could realize it. Also I think it'd important that the first bigger public event would be followed by presentations, public scientific discussions, etc.. Otherwise we'll have the situation that some uninformed doctors/professors will make statements without our possibility to counter them accordingly.
    Maybe the first step would be to create a Selbsthilfegruppe.

    Since I'm bedbound for the most part and have a strong mcs I couldn't be much of a help, unfortunately. Anyhow it would be awesome if something is going to happen!
     
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  19. Joh

    Joh Senior Member (Voting Rights)

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    Welcome to Science for ME! Another member from Germany, yay! :)

    I hope you don't mind that I disagree after your first post. :hug: I think Millions Missing is great to raise awareness in the public who have never heard of ME, on the street. Scientific discussions are interesting for people who already have a little knowledge on ME and are interested to learn more. If we create a self-help-group first, it would probably take a few years until the first MM can start. :) I think sometimes if plans are too big they can result in that nothing is done and we can start with something small.
     
    Last edited: Feb 12, 2018
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  20. Miri

    Miri Established Member (Voting Rights)

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    Welcome Lenny. I am new here too :)
     
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