News from Germany

[Hutan]

Impressive new consensus statement for Austria, Switzerland and Germany (in German)
Interdisciplinary, collaborative D-A-CH consensus statement concerning the diagnostic and treatment of ME/CFS, 2024, Hoffmann et al [German]

 

[rvallee]

Some photos from a protest in Hamburg for International ME day:

https://twitter.com/user/status/1792633304933396733

 

[Hutan]

That's a pretty impressive turnout. Numbers like that surely build momentum.

 

[Dolphin]

NRW launches advice hotline for Long Covid patients

Some people suffer from serious health problems after a coronavirus infection and sometimes also after coronavirus vaccinations. What happens to them when they can no longer work?

https://aussiedlerbote.de/en/nrw-launches-advice-hotline-for-long-covid-patients/

 

[rvallee]

I think this was today, a public demonstration somewhere, not sure where. Appears to have a 17 min video. Mentions how COVID add "a few more", hoping that's a mistranslation.


Remain visible - despite serious illness

Under the motto "Lying Down Demo", those affected have drawn attention to ME/CFS nationwide. Patients suffer in secret most of the time. Even the smallest activities can lead to complete overload.

https://www.tagesschau.de/inland/gesellschaft/mecfs-demonstration-100.html

 

[rvallee]

Worth preserving IMO. Some may have heard of this Kleinschnitz dude, who has serious behavior issues over Long Covid. Kind of a German Wessely in the sense that he has had a big voice in Germany, but with the diplomatic chops of a tomato. Very unhinged behavior. I don't know what it takes for medical bodies to call out someone's behavior when they are so openly contemptuous of sick people.

https://twitter.com/user/status/1822674021902672250

As usual, it really seems like psychosomatic medicine attracts the absolute worst people in the profession. It's actually remarkable how consistent this is.

 

[Kalliope]

Der Spiegel has an article about ME today. It's paywalled, but here's the text that's available translated into English. Don't know which treatment this is..

"The quality of life has multiplied. Just being able to breathe well is great"
A woman suffering from ME/CFS has won her case in court: her health insurance company must pay for her treatment. She now hopes that other chronically ill people will benefit from the outcome of the case.

https://www.spiegel.de/gesundheit/m...utm_source=dlvr.it&utm_medium=twitter#ref=rss

 

[rvallee]

Not too sure of the details but my understanding is that the German government will be announcing a decision about off-label use of some medications for Long Covid to accelerate finding effective treatments, but word is that non-COVID ME/CFS will be left off.

This announcement will be next August 23 and some pwME are organizing a demonstration in front of the BMG, emphasizing the urgency of the situation and the needs of pwME:

- We will meet on 23.08 at 15:30 in front of the BMG (Mauerstrasse 29, 10117 Berlin) - We demand the publication of the promised off-label list for #LongCovid and #MECFS - We wear masks because we protect ourselves from reinfections

https://twitter.com/user/status/1822999320016105699

I think BMG is the ministry of health.

OG pwME being left off is based on this:

Now it is out what many feared: Of those #MECFS affected only those who are ill due to Covid will benefit from the off-label list.

https://twitter.com/user/status/1825550708487405617

 

[SNT Gatchaman]

Der Spiegel has an article about ME today. It's paywalled, but here's the text that's available translated into English. Don't know which treatment this is..

Immunoglobulins. https://archive.is/P3HQl

 

[rvallee]

Thanks to the initiative of two fellow affected people, @NoHealthNoFun & Lena, and some extra last-minute organising efforts by team BBC, we managed to have our first demo today.

https://twitter.com/user/status/1827058144184557881

We didn't plan too much because it was so spontaneous, and we thought we'd be lucky if ten people showed up, but there were 6x + that many people.

https://twitter.com/user/status/1827058144184557881

 

[Kalliope]

A German science YouTuber, Doktor Whatson, has made a video about ME/CFS. It receives praise on Twitter.

Edited spelling.

 

[Kalliope]

Brigitte, which seems to be a women's magazine?, has an article about ME where they present four patient stories.

autotranslated quote:
In Germany, the number of people affected by ME/CFS has doubled from around 250,000 to 500,000 due to the COVID-19 pandemic. In an interview with BRIGITTE, four patients talk about what it feels like when life passes you by.

"We lose our lives without dying".

https://www.brigitte.de/aktuell/ges...ter&utm_medium=rss-feed&utm_source=t.co&t.co=

 

[Leila]

Jan Böhmermann (late night satire, similar to John Oliver) has a segment on LC (starting from minute 11:10) and is throwing shade at Prof. Kleinschnitz, a neurologist that is not only denying ME but also is publicly making fun of the severely ill.

https://www.zdf.de/comedy/zdf-magazin-royale/zdf-magazin-royale-vom-30-august-2024-100.html

(Edit wording)

 

[Kalliope]

Jan Böhmermann (late night satire, similar to John Oliver) has a segment on LC (starting from minute 11:10) and is giving shade to Prof. Kleinschnitz, a neurologist that is not only denying ME but also is publicly making fun of the severely ill.

https://www.zdf.de/comedy/zdf-magazin-royale/zdf-magazin-royale-vom-30-august-2024-100.html

Approved by Scheibenbogen who says it's well researched and to the point.

https://twitter.com/user/status/1829602417039802687

 

[Leila]

They've done better journalism than many classic journalists have done. Also stressing the importance of pacing.

 

[SNT Gatchaman]

I watched this. I don't speak German but it is very John Oliver! I'll watch it with my friend when he's next over and he can translate for me. (Or YouTube with subtitles if available later.)

 

[Leila]

I watched this. I don't speak German but it is very John Oliver! I'll watch it with my friend when he's next over and he can translate for me. (Or YouTube with subtitles if available later.)

It's on YT now, don't know how good the automatic translation to English is

 

[Hutan]

It's on YT now, don't know how good the automatic translation to English is

The English translation is often pretty loose. There's obviously a lot of jibes and jokes where you need a bit of German background, but so many good points are made. Satire is such an effective tool for changing/creating public opinion.

 

[Leila]

Agree.

The show is mostly addressing genZ and millennials and there are lots of (pop) culture references that not only get lost in translation but also are hard to grasp in German if you're not part of the target audience.

The gist of it of exposing how pwLC & ME are being treated as well as the despicable public behavior of said neurologist gets through though I think.

I'm curious to see how he's going to react. The host has been sued numerous times before.

 

[Turtle]

Agree.

The show is mostly addressing genZ and millennials and there are lots of (pop) culture references that not only get lost in translation but also are hard to grasp in German if you're not part of the target audience.

The gist of it of exposing how pwLC & ME are being treated as well as the despicable public behavior of said neurologist gets through though I think.

I'm curious to see how he's going to react. The host has been sued numerous times before.

Not a genZ or millenial and after 50 years my German is quite rusty, but in a very fast tempo the host is putting out so much information about ME/CFS and LC that I would hope it would be mandatory for all doctors and psychiatrists and psychologists to watch and listen to. A great thank you to Jan Böhmermann!!