News from Germany

I'm not really into politics- is there reason to hope for an Improvement of the situation for PwME here in germany from the new coalition? The former health minister jens spahn never acknowledged our existence, so it can only get better I presume.

 

https://twitter.com/user/status/1447892620521394181

 

Here's a direct link to the website with more info about this petition: https://signformecfs.com/

If I understand correctly, the petition is only open for 4 weeks, until November 9th.

 

I'm such a slow writer that I crossposted with @Michiel Tack (thanks for supporting the petition!), but but I guess it can't hurt to draw attention to it several times.

https://twitter.com/user/status/1447899414060732419


https://twitter.com/user/status/1447886072386662403



Please sign ME petition to the German government

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.

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

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

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

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

 

The instructions for non-German speakers are excellent, very clear.

The process of registering and signing is a bit cumbersome but it's doable with a bit of patience. I kept 2 windows open side by side so I had the instructions visible right beside the form to fill in and just took it step by step.

I hope the hassle involved, minor as it is, isn't going to put people off. There were only 600-odd signatures when I signed. Long way to go to 50,000.

 

Anybody from Germany on Twitter who can provide some support to this person?

https://twitter.com/user/status/1455579030770655234

 

Nuremberg: Mother (39) has chronic fatigue syndrome

https://news.in-24.com/health/247409.html

(features a photo of her in her wheelchair)

 

Anna Dietzke, Tagesspiegel 10.11.2021

Marina Weisband lives with chronic fatigue syndrome: "The most common cause of death from the disease is suicide"

34-year-old Marina Weisband is a psychologist and participation educator, book author and mother. But above all, she is also a sufferer. She suffers from ME/CFS.

https://plus.tagesspiegel.de/politi...sursache-der-krankheit-ist-suizid-299551.html

Paywalled / deepl translate of the first paragraphs:

Edit:

Marina Weisband is one of the public persons who repeatedly shared the petition on Twitter.

 

https://twitter.com/user/status/1463517077898244105

 

The German Association for ME/CFS and Long COVID Germany cooperated to get ME/CFS and Long COVID into the coalition agreement of the new German government. They talked to the different parties and developed a position statement with concrete measures.

ME/CFS is now officially for the first time part of the coalition agreement. The government writes: "We are creating a nationwide network of competence centers and interdisciplinary outpatient clinics to further research and ensure care for the long-term consequences of Covid19 and for chronic fatigue syndrome (ME/CFS)"

- Article by the Germam Association for ME/CFS: https://www.mecfs.de/koalitionsvertrag
- Automatic English translation: https://www-mecfs-de.translate.goog...r_sl=de&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=nui

Of course, there is still a huge amount of work to be done to get everything going in the right direction (and I know that "multidisplinary" can go wrong), but it is a very important first step. We do not have centers or outpatient clinics, so far pwME have basically nothing. (At the Charité, only patients from Berlin and Brandenburg can get a one-time appointment for diagnosis.) And Germany had 0 euro research funding until 2021 and a tiny amount for the first time this year.

 

This looks very promising. Also, once you have a service like this in one country then it becomes more difficult for other countries to make no/lesser service provision ---- well done to Germany.

EDIT-
@Jonathan Edwards has highlighted that [EDIT-typos] his way, into making progress in autoimmune rheumatoid arthritis, was a funded arthritis service which facilitated the development of effective treatments. It will be interesting to see what the service in Germany is like --- but it is a way to make progress.

 

“A historic success for the sick”

https://globalhappenings.com/politics/53208.html

 

Hey, let's not sell the chickens before they hatch. None of the prior eggs have hatched, it's kind of a trend.

Looking forward for the very first but this whole celebrating before anything's been done is an especially annoying trope because nothing ever gets done in large part because of that fake celebratory nonsense people point at to say: "see, things are changing!".

 

Is there any evidence for any of this?

 

German politician talking about having ME and LC.

https://twitter.com/user/status/1467505573855903749

 

OK this is very interesting, the new German minister of health has been quite vocal for a while about ME and generally in a good way. Recognizes the massive overlap with Long Covid and how dire things are. This could be a major change.

IIRC he shared the petition that was sent a few weeks ago to the Bundestag (German parliament) and was supportive of its aims. So now he'd be in charge of some of the government's response. But governments work with collegiality, so no guarantee there won't be pushback.

https://twitter.com/user/status/1467953904071622662