Guideline "Tiredness" by DEGAM

[TiredSam]

Can you tell what people there say about the situation in Germany?

They say it's completely shit. Some of them are unable to work and have finally decided to stop fighting and accepted a diagnosis of depression and been on a rehab (Kur) just to get half a pension. The woman from the film "In Engen Grenzen" is in my group, the Kur nearly killed her. There's the mother of a woman who was treated so abusively in a psychiatric institution that she spent the first few weeks home lying in bed unable to move except for occasionally screaming, which her parents had to listen to. I wrote about it in my blog on PR. Then some people talk about their court cases and the psychosomatic expert witnesses they'll be up against. Then a few of us go for a meal, order salads and water, and pretend to the waitress that we're a weightwatchers group. It's usually quite a laugh.

 

[TiredSam]

Here's a link to my blog:

http://forums.phoenixrising.me/index.php?threads/my-trip-to-the-charite-in-berlin.44474/

List of all parts of the blog is on page 4 of that thread.

 

[Inara]

Thank you, @TiredSam, very interesting and helpful. Would you say those people would get active, i.e. do some advocacy? If some people suggest amygdala retraining, do they believe ME is psychosomatic?

Thanks for the link, wanted to ask for it

Edit: Ah, I've already read your blog in the past!

 

[TiredSam]

They are a very mixed bunch, and just making it to the meeting is too much for some of them. A couple of them have been to fatigatio conferences.

Here's a bit of local activism when a father decided to get up and do something:

https://www.rnz.de/nachrichten/metr...erkaeltung-hat-alles-angefa-_arid,303679.html

Don't know what happened about that. A few people alerted me to the article at the time, and I was very touched when a friend of mine got hold of a form and went round the village collecting signatures on my behalf. I didn't even ask him to, he just did it.

 

[Inara]

Here's a bit of local activism when a father decided to get up and do something:

Do you know that person? Would you say it's reasonable/helpful to invite him to s4me?

but people will try stuff and believe it helps and swap tips.

Yes, I know. I did this, too. But after trying lots of things - amygdala retraining excluded; even when I was a "believer" that sounded...too strange - I decided only to try things that have a factual basis. At some point of experimenting people have to understand it's only a waste of money, don't they?

 

[Joh]

Do you know that person? Would you say it's reasonable/helpful to invite him to s4me?

He's very active and still on tour. If you check out the Deutsche Gesellschaft Facebook page, there are also videos, they did a protest in Berlin together (you don't need to have a Facebook account to watch the videos). His Facebook group is "50.000 und eine Stimme" or so I believe. I have the form to print out and collect signatures somewhere and could look for it. You can't sign online. (You can also invite him to your city.)

 

[Joh]

Here's a link to my blog:

Your blog was such a great read! I'm still in suspense what happens next and remember something about two last parts that were supposed to follow.

I was very touched when a friend of mine got hold of a form and went round the village collecting signatures on my behalf. I didn't even ask him to, he just did it.

Your friend sounds awesome!

Then a few of us go for a meal, order salads and water, and pretend to the waitress that we're a weightwatchers group. It's usually quite a laugh.

That sounds amazing and funny! I'm so envious and still haven't met a pwME in real life. Actually two groups were founded during the last six months in a radius of 100 km, so I just need to get better and could attend them. Haven't been out apart from doctor visits in 19 months and going out to have a salad sounds like the craziest and most wonderful exciting social life.

The woman from the film "In Engen Grenzen" is in my group, the Kur nearly killed her.

I remember her, thanks for sharing about your group, very interesting!

 

[Joh]

Here's a bit of local activism when a father decided to get up and do something:

Great new 2-minute TV segment about Mathias Ilka (besides the "CE" and "very rare" that the Hessischer Rundfunk sprinkled in). Prof. Scheibenbogen is also interviewed: http://www.hessenschau.de/tv-sendung/video-55574.html

ETA: "CE" has now been changed into "CFS" and the "very rare" is changed in "unknown" in the title (but still in the text). It's great to see that it often works to ask for changes (some people wrote them).