Millions Missing May 2018 - in Germany

Just a question. This is fairly new forum isn’t it? I know Phoenix rising as an English spoken forum. And I know symptom.ch and cfs-Treffpunkt. But science 4 me seems new to me....

 

Although NRW is so big, there isn't much going on ME-wise. But a new group in Aachen was founded in December and a group in Cologne this week, maybe they're supermotivated (no idea how many members, I guess they start out small). There's a group in Dortmund but it's let by the person who wrote the infamous letter in the Leitlinienreport.

I only thought of Berlin because there's one pwME who wrote that she would like to take part (but of course can't organize it alone) and because I know s/o else who might take part (and a few others I could ask). In Berlin are also two self-help groups (but I don't know how active they are). The downside is that it's basically impossible to get press interested in Berlin as too much is happening at the same time. A smaller city might be better to get press coverage what is more important (or as important) than the people you reach directly.

As far as I remember at the BT several demos can happen at the same time because it's a huge space. (But I guess it's already booked and you need to plan more in advance). The downside is that there is no real Fußängerverkehr and mostly tourists. The 12th is a Saturday and it would be great to be somewhere where people walk by like in a "Fußgängerzone".

The organizations in the US and UK have paid full-time staff. The salaries e.g. from Linda Tannenbaum and Sonya Chowdhury are high. Don't remember how much exactly and it doesn't matter here, but the resources are not comparable to Germany. The organizations e.g. in the UK have much more members (although there are 50.000 less pwME in the UK) and paid full-time staff and it can't be compared to volunteers who are sick or do it besides their full-time jobs. The German organizations need members to grow (and we need more people to get diagnosed).

People have written them repeatedly about Millions Missing and they're not interested. But after the Methodenreport with the Leitlinie I don't think they act in the interest of pwME and should be involved.

I'm a pwME and volunteer for them daily and there are other pwME who volunteer for them. I have often asked around in the past (e.g. for people who would like to translate, last time yesterday) and most people weren't interested. I'd also love to share the translation for the OMF newsletter but wasn't able to find another German who's willing. As far as I know a new call for volunteers is planned but it needs a time where you have the time to answer questions and train people etc. The board has full time jobs and does this on the weekends and in the evenings.

 

The Deutsche Gesellschaft and Lost Voices Stiftung cooperate and are in regular contact and friends. The Lost Voices Stiftung also took part in the Millions Missing event 2016. The Deutsche Gesellschaft has a newsletter if that's what you mean?

 

You’re right. The Brandenburg gate is more s Touristic place. And a smaller town would probably gain press coverage.

The tow regional groups that have been founded recently in Aachen and in Cologne belong tonthe Fatigatio, so what to expect?

The DG does an amazing work and I guess most is done by Sebastian and Daniel.

The thing with translation is that only a few People are good enough to do this. The DG does more theoretical work and not everyone has the capability to do this. There is more that volunteers can do eg organizing a physical Protest. Good to know that the DG is planning to attract volunteers.

They might be also very cautious in their doing and attracting volunteers because they don’t want to have damaged their reputation by sketchy persons. I could totally understand this.

So you think it might be good to contact the regional group in Aachen and Cologne although they belong to the Fatigatio?

 

A word to the Fatigatio. I am not a member because I could never relate. As the DG popped up I immediately got a member of the DG.

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.

May be one should try again to reform the fatigatio from the inside. You can transfer your voting right to another person. Why not pooling one‘s strength. A Group of people can give one person the authorization to vote for them. I guess one person can have several letter of authorization.

I‘ve heard about Linda T sallary and some people complained about it. But if you are doing a good job why not. I guess she could earn that money working in the economy. It’s a high salary but I guess she es working more than 40 hours a week.

The thing is we need some brillant eloquent dedicated hard working minds as Cherpersons too but we cannot pay them.

And you are right more person must be diagnosed. But the charité only takes people from Berlin Brandburg. I guess no other hospital will diagnose G 93.3 only private doctors. I am lucky I was at the charite in 2013 and got diagnosed and their report gave importance because from the charite.

 

So just contacted the two regional groups in Aachen und Cologne and asking if they are interested in millions missing action on may the 12th. waiting for answers. let you know.

 

I guess self-help groups can still do awesome work and it mostly depends on the volunteer "leaders" and members and they can be much better than the Fatiagtio. The email from the self-help group in Aachen actually sounded very good (and e.g. used ME/CFS, not Chronic Exhaustion Syndrome or CFS/ME like the Fatigatio).

Sorry, I worded that badly and went back and edited to not make it sound like I criticise the salary. Just wanted to point out the huge difference and that we can't compare German organizations to those in the US or UK with paid full-time staff that have the resources to attract professionals.

I've read that idea several times and I absolutely think that won't work and will just take time and energy and we will be busy fighting the Fatigatio instead the real problems. In my opinion this is how movements fail if they're busy arguing with each other. So much else can be done with our time and energy, Millions Missing, Unrest, translations, articles, press work, political work etc.
I guess the problem is much bigger than the chairperson. A lot of patients have tried to change the Fatigatio since the last Leitlinie, it doesn't want to be changed. The board is aggressive in the forums and defends the letter. Hope everybody will become a member of Lost Voices Stiftung or Deutsche Gesellschaft or give their Fatigatio member fee to research instead. I believe the only way that Fatigatio will change their mind is if the member numbers drop and it will take years to reform it. Better things to do out there for us. I don't know how the self-help-groups work but I guess they do all the work themselves anyway and could exist without the Fatigatio.
Sorry, this outburst was not directed at you, I've just read that idea so many times and really fear that people will continue to put their energy into trying to change the Fatigatio instead in advocacy work. But of course everybody has to decide themselves what they think is best.

 

I guess you are probably right and as we have an Alternative with the DG there is ne need to waste scarce resources. And if the number of members rises the DG has more money to spend for good work.

Can I ask you Germans where you all live?

I am from düsseldorf.

 

Me too! Don't know anybody around here with ME, so happy to have met you!

 

Wow! What a coincidence!!!!!!

 

I know one person with me/cfs in Düsseldorf.
I know one in Solingen.

 

Wouldn't dare say it - but what about the small city I live in, Tübingen? It's one of the medicine centers with a Uniklinikum, and pretty conservative. I contacted a left politician in the past, and she reacted - and positive she maybe could be brought into this; I would have to meet with her with concrete plans.

The mayor could be open to something like this. BUT there is no big pedestrian zone in Tübingen (well, there is the Altstadt which could be a little crowded on a Saturday in May, but nothing compared to Stuttgart, Munich or Düsseldorf).

@Joh, the problem with volunteering, especially translating, is that I can't do it constantly. There are times when I'm "out". There are times when I'm busy with officials and need all my strength for that. Up till now, I didn't hear a "that's fine with us", so I don't volunteer.

 

Same problem with me Inara. Since I am bedridden my cognitive function worsened as well and there are times that I am really bad. So I am cannot function at a constant level. That's why I hesitate to do voluntary work because due to my severity I am not reliable. If people accept that I cannot deliver on a constant level, I would be fine for me if they are fine with me.

Tübingen sounds good. A friend of mine has a PHD and worked in Tübingen. Another friend also works in a pharmaceutical company there and lives close to Stuttgart.

What about Stuttgart then?

 

Regarding the issue millions missing I asked the DG, the LVS and the two regional groups. I wait for their answers. Depending on that I start an official call at facebook who is interested in doing such an action and which city might be supported.

People die like Rebecca and Nicola recently and nothing is happening. Makes me so so sad and angry.

 

I don't know Tübingen but there might be a place in the city. So if the street is tight people have to pass and look

 

Stuttgart would also be fine with me. I think I could be there personally for 1 hour or so...

Tübingen's Altstadt is pretty tight there is a place in front of a bigger church where such actions take place, and they are always seen by bypassers. You can't look away. If you want to walk away you would need to turn around and choose another path.

 

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 month 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 these organizations so far.

 

Wow Joh that sounds really good that all these organization are so sympathetic. I am thinking since having become member at the German Association to join as a volunteer. You writing makes it even more possible. I think about this.

I am actually in the same situation as you. I have already a GdB of 70% with the markers "G" and "B". Now I have to 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 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. Beside all this mess I myself have big problems to accept these circumstances. My employer still hasn't fired me. Although it is the second time in the last 5 Years that I am unable to work for a long time. But this is another story and can be told on another place at this forum. Here it is about action