Millions Missing May 2018 - in Germany

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.
 
Joh said:
I totally understand. To get an impression: I'm homebound and 22 hours per day in bed, haven't met friends in 18 months, can't talk on the phone or have visitors. Also I have to fight with Krankenkasse, Agentur für Arbeit, Rentenversicherung and apply for GdB and retirement at the moment. This was why I hesitated to volunteer myself. But the German Association is absolutely cool with that and it's clear that people can only volunteer when they're up to it and that people drop out completely for months. They have a skype conference once a months with the board and volunteers and I said I can't do it (writing is much easier for me) and that's ok. The OMF asks every time, if you have the time and health to translate this article. ME Action (Unrest) totally understands. All of the organizations make clear that the health comes first. I made only very good experiences as a volunteer with all of these organizations so far.
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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.
 
Miri said:
Now I have apply for a disability pension and I am really fearful because I guess this will be a strenuous and lengthy way to go. I am still young enough for the Rentenversicherung with and many decades ahead of me possibly able to work so I guess the younger one is the more difficult it is to get a disability pension.
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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.
 
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.
 
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.
 
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Andy said:
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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And I would do it again and work with others.
 
Miri said:
I even started a PowerPoint presentation about the current status of me/cfs to present this during the conversation.
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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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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.
 
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!
 
Miri said:
Does this forum have a private messenger function?
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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?
 
Inara said:
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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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.

Miri said:
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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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).
 
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...
 
Miri said:
But the infrastructure of the fatigatio is good. The thing is whether the chairpersons are doing a good job or not. The latter seems more likely. I know many said that it was tried to reform the fatigatio from inside but never succeeded. People are to ill to travel and vote but I wonder if it is really the best strategy to leave the Fatigatio when you are s 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.
 
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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).
 
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!
 
Lenny said:
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.
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Welcome to Science for ME! Another member from Germany, yay! :)

Lenny said:
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.
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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.
 
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