Millions Missing May 2018 - in Germany

Hi,

I guess you've all seen the other thread (or got the email) that the planning for the Millions Missing protests have started: https://www.s4me.info/threads/millionsmissing-global-protest-may-12-2018.1992/

I opened this thread to talk about a possible protest (don't dare to use plural ) in Germany. Up until now the Deutsche Gesellschaft für ME/CFS were the only ones to bring Millions Missing to Germany (they participated twice): https://www.mecfs.de/millionsmissing/
As far as I know they don't think they can organize it again in May. I'm also in contact with a pwME in Berlin who would love to bring Millions Missing to Berlin (but can't do it all alone).

A first kick-off call (kind of an international online conference) will take place in February. You can sign up for more info here: https://millionsmissing.meaction.net/

This Millions Missing video is my favorite ME video:

https://www.youtube.com/watch?v=GolQjX7P4Qc

I'm housebound so I'm of limited use. But I'd love to support from bed. I've helped organizing demos in the past and could check out requirements/official permissions for renting a public space and doing the protest and help with press work, get the word out to other pwME etc.

The Deutsche Gesellschaft has translated all of the Millions Missing posters into German. Maybe it's possible to lend out the posters and 150 (I think) pairs of shoes from them.

It's also possible to participate online but of course a "physical" protest would help much more to raise awareness (and one doesn't exclude the other). Last year there was a single media report on the international ME day on Germany (from a football club because of Olaf Bodden). This is a huge opportunity to get ME into the media that we shouldn't miss.

(we need an empty shoe emoji )

 

3 minute Video from Millions Missing Hamburg, September 2016 (you might have to enable the sound):

I want more of this!

 

Is anybody interested to help and does anybody know people who might be interested to take part in Berlin?

(Copied and pasted a lot of shoe emojis from other places to make this question look more attractive, but somehow they don't show now )

 

Copied from Deutsche Gesellschaft für ME/CFS facebook page.

 

Some more of the German posters (copied from Deutsche Gesellschaft für ME/CFS facebook page):

 

Great idea, thanks!

 

Thank you @Andy, great idea! I'd love to come by "personally" at the facebook post and ask people to contact me, but facebook suddenly closed my account yesterday and said they have to check it. No idea why. Will inform the pwME from Berlin about the post (and told her about this thread).

 

Hi @Joh, let me know where I can help. I cannot travel to Berlin, though.

 

Liebe @Joh, hello Joh,
great to make a post about Millions Missing in Germany!!!
Still have to watch the video of the MM from the German society for ME/CFS.
I would love to take part in / organize Millions Missing (not in Berlin though). Right now everything is a bit difficult, because housebound/bedbound. Can you assist with "event-organizing to-do-lists"? As you mentioned, permissions etc. for demonstrations... At least I'll try to activate healthy friends and if it doesn't work this year, then it has to work out next year...
If there would be an event in Berlin someone can bring my shoes at least!

 

Hello guys,

I am new at this forum and haven’t introduced myself yet.

I like the idea of organizing a real not only virtual protest in Germany. I am very limited with my engerg because I am totally bed bound at the moment.

I wrote an email to the German association of me/CFS if they are planning something for this year. Haven’t got an answer yet. Last year they told me that they haven’t got the resources to get involved political activism.

I thought how we could connect and pool our strength and try to organize something this year in Germany. May be we could have a Facebook group where we collect ideas and organize and where we acquire voluntaries.

Sorry for not introducing myself in the first place. I will Do this in the future. You can also find me on Facebook.

Are you on Facebook?

Best greetings from
Miriam

 

Where I definitely need help is with courage I lack the courage to make my illness public, e.g. to neighbors and others.

 

Hi @Miri, welcome to the forum! Nice to have you here!

I am not on Facebook, but there are many others who are. I would be very happy if we could keep the discussion here, but it's probably only me. So do as is best.

 

Hallo liebe @mari_gold,

welcome to Science for ME!

Yep, I could do this. But as far as I know ME Action normally has awesome how-to-guides on their website (will try to look them up) and they organize an international advocacy call this month. There are also Millions missing planning groups we could join. But of course I would be also happy to help. Also I guess the German Association has a lot of knowledge as they've done this specific event before. So happy to meet more Germans here!



Hi @Miri,

welcome to S4ME! Great to meet more German pwmE here.

The German Association were the first and only ones so far who brought Millions Missing to Germany. They did events in 2016 (physical) and 2017 (virtual, with a video) and all of the pictures and videos I posted are from their site and there are more. As far as I know they would be happy to support an event (shoes, posters, ideas) but prefer not to organize it this time.

I have problems with my facebook account and can't access it at the moment.

 

And welcome to you, @mari_gold!

 

My shoes have been there 2016

On Facebook you find far more PwME. I think think it is easier there to mobilize people for such an event. Hopefully your account issue can be solved quickly.

Do you know mathias ilka? He is planning an event in Berlin at the Brandenburg gate with his action „50.000 and one voice for me/cfs“ as far as I know. The question is if one can combine those action ore not.

I just wait for the answer of the German association. But I guess the answer will be no according to organize such an event.

In case Not I will ask in several Facebook Groups whether there are People who would like to organize a physical event.

 

Hi @Miri,

I just remembered that I think we wrote in the Time for Unrest group (about the RTL report)?

Have you asked the Lost Voices Stiftung?

I wouldn't be a huge fan of combining the two events as the messages could get mixed up but on the other hand it would probably be easier from an organizational point of view (renting a public space, getting the permission for a demo etc). Unfortunately I can't open a new facebook account at the moment (no idea why, no rule breaches).

Which city would you prefer?

 

That's so exciting to hear @Miri!
I've never heard of mathias before, just watched his facebook page. If there's already an event planned in Berlin that's so great to hear.

Any ideas how to join and bring all the good german initiatives together? Does the deutsche Gesellschaft have mailing lists, feeds etc. or does anything like that exist? Do you know of something like that?

Hello @Inara and thanks for the warm welcome @Joh

 

I would prefer a city somewhere in the middle of Germany. But not for my sake more from a logistic point of View. It might be easier for people to get there.

North Rhine Westphalia has nearly 18 million people. Nearly a quarter of Germany. May be a city in NRW? Cologne? Düsseldorf?

On the other hand Berlin is the capital and would have more a symbolic character.

The thing is the Brandenburg gate will be used by Mathias. I guess he has already the permission.

The thing is that we have so many controversial groups/persons here in Germany but I often think that if we do not overcome these controversies we will not succeed. Resources are scarce.

And do we really have different missions at the end of the day? We want ME to be recognized, we want public funding, we want care.

The thing is that we lack of people who have the capability to do a great job. Millions missing and me action is brillant. Brillant minds have developed this. In the US organization are very strong and have eloquent chairpersons.

I wonder where we can find these people in Germany. I can only guess that a lot of don’t want to go public. Where do we find parents or Partner or friends of Pwme who are willing to do voluntary work. We cannot afford to pay them. Carol Head and Linda Tannenbaum are doing there work as a full time job and get paid I guess. How could we afford this?

I haven’t contacted the LVS.

And we do have the Fatigatio in Berlin with 1.600 members but until now they did not take action with regard to millions missing.

To many things in Germany go wrong. We need more courage and willingly to change things and we have to Build a Network of People Doing voluntary work.

I miss that the German association is not soliciting for volunteers in a more Public way. They do a good job but are often to silent when it comes to get in contact with pwmE. I can understand that their Ressources are scarce but they should attract and advertise for volunteers.