Germany: ME/CFS in Germany

[Inara]

There is a history of the different patient groups in Germany not agreeing on things.

The reason for this might have been one certain patient organization who wasn't really rejecting the BPS approach ("we mustn't come across as aggressive but cooperative") and who even worked with one of the biggest BPS proponents in the 90s. Maybe a bit like Action for ME in the UK...
Luckily, this patient organization changed dramatically and new ones were founded, and luckily, cooperation was possible, but this needed discussions.

Although I congratulate the German organizations for their successes, I find them minor compared to the amount of effort that was and is put into this. They work *a lot*. They and all patients deserve more than some bread crumbs.

I’m interested in the prevalence stats which are lower than the ones used in the uk considering higher size of population but not so low, i was wondering how they were reached ?

Do you mean why the numbers of ME diagnoses are so low in statistics? If so, that's because ME simply isn't diagnosed in Germany. Instead, depression and psychosomatic disorder are diagnosed.

 

[Cinders66]

The reason for this might have been one certain patient organization who wasn't really rejecting the BPS approach ("we mustn't come across as aggressive but cooperative") and who even worked with one of the biggest BPS proponents in the 90s. Maybe a bit like Action for ME in the UK...
Luckily, this patient organization changed dramatically and new ones were founded, and luckily, cooperation was possible, but this needed discussions.

Although I congratulate the German organizations for their successes, I find them minor compared to the amount of effort that was and is put into this. They work *a lot*. They and all patients deserve more than some bread crumbs.


Do you mean why the numbers of ME diagnoses are so low in statistics? If so, that's because ME simply isn't diagnosed in Germany. Instead, depression and psychosomatic disorder are diagnosed.

Sorry, I meant that they say estimates for the population are 240 000 which is about the same as those used in the UK. Yet the population of U.K. is 68 m and Germany 80 m. So I just wondered how it was being calculated. I’m sorry there’s an issue with diagnosis when it is so different in presentation to the others.

 

[Inara]

I see, sorry for the misunderstanding.

Don't they say 300.000 in Germany? At least nowadays...

 

[Hajnalka]

Call to action: international support for German ME-petition to the government needed

https://twitter.com/i/web/status/1447886072386662403

https://twitter.com/i/web/status/1447899414060732419

Today a petition to the German Bundestag went online.

Anyone from any country at any age can sign. The German ME community is quite small, as ME is still very unknown here and we would be very happy about international support.

Four pwME have started the petition and designed an excellent accompanying website. The website is available in German and English.

The goal is to reach 50,000 signatures within one month (until November 9). This number in the short timeframe is needed for the pwME to be invited to talk about the petition at the German Bundestag.

You can sign the petition online or on paper. Thanks!

Website (English version): https://signformecfs.com

 

[Pyrrhus]

Call to action: international support for German ME-petition to the government needed

Why not sign two petitions for the price of one!

In addition to the German petition that is currently circulating, there is also an Austrian petition here:
https://www.openpetition.eu/at/peti...ng-von-betroffenen-sowie-forschungsfoerderung

ME / CFS: RECOGNITION, MEDICAL CARE & PROTECTION FOR THOSE AFFECTED AS WELL AS RESEARCH FUNDING
Austrian Society for ME / CFS

This petition calls on Austrian politicians to support those affected by ME / CFS in four areas: 1. Information and education, 2. Development of medical treatment and care structures, 3. Social security and 4. Research funding. A working group is to be formed to implement the requirements and to carry out ongoing evaluations.

https://twitter.com/i/web/status/1449027210703167488

 

[Rebeccare]

This video was posted earlier today:

 

[mitoMAN]

The German Petition is horribly complicated to sign.. sadly. I am afraid this will put quite a few off

 

[SNT Gatchaman]

The German Petition is horribly complicated to sign.. sadly. I am afraid this will put quite a few off

The step-by-step English instructions are easy to follow (for those sufficiently well to attempt). It took me 5 minutes to confidently go through the process, speaking no German.

 

[Rebeccare]

Apparently they've gotten more than 1000 signatures a day since starting the campaign; that's incredible!

 

[Pyrrhus]

Absolutely stunning. "I kanns net glaub'n."

Is this a pivotal moment in ME advocacy?

https://twitter.com/i/web/status/1457389483142246401

 

[Breagjam]

Amazing and encouraging!

 

[Inara]

I am glad I was proved wrong. But to defend myself this is unique in the ME world. Congratulations to the organizers who have done an amazing job, but also thanks to all who participated.

 

[Rebecca under the papyrus]

ME/CFS is part of the new government's coalition treaty... They write about a network of competence centres and interdisciplinary outpatient clinics for Long Covid and ME. Let's see what happens.

 

[crowtor]

It would be great if there was a list of doctors that are "annerkannt" in that their diagnosis is legally binding? Has anything changed in this regard? Buying a forged Meldebescheinigung to get accepted at Charite in Berlin is not an issue I just cannot travel such a distance.