Germany: ME/CFS in Germany

Inara

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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

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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.
 

Hajnalka

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



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

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Call to action: international support for German ME-petition to the government needed
Why not sign two petitions for the price of one! :thumbsup:

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.
 
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