News from Germany

An amazing radio report on the statement of the German government about ME was broadcasted. It's only five minutes but mentions the world "scandal" twice and that exercise is harmful. Also the word "embarrassing" and other terms are used to describe the statement of the government and the discredited studies it refers to.

The channel "BR" is a big public broadcaster. The science journalist Yvonne Maier is great and has reported on ME before.

https://www.br.de/mediathek/podcast...hutzkonferenz-hoffnung-fuer-140-arten/1709669 (in German – starts at minute 3:50)

 

Great radio report but one caveat: Patients can not simply go to the me/cfs medical departments in Berlin and Munich.
The Charité accepts only patients from Berlin and Brandenburg; Munich is for children with ME.

 

Saw this German article on ME/CFS, but the full text isn't available. Anyone seen it?
https://www.neuepresse.de/Menschen/...MtfhSc6vo3pQfZg54dWN4_59yXWenZHZvtGG3KaGLYgDE

 

Couldn't find the full text either. But I guess it's good, Nicole Krüger is the founder of the German Lost Voices Foundation and does great work: https://me-pedia.org/wiki/Lost_Voices_Stiftung

 

https://twitter.com/user/status/1175868340822319109

 

https://twitter.com/user/status/1177265131362893824

 

I noticed an uptick on twitter (I would say social media but I don't use facebook but I guess it must be the same) activity from German pwME and thought it useful for those active on twitter to build some connections and help get topics trending. It seems to have spawn in part from a recent article published in a national publication but I'm not sure if it was posted here.

Trying to highlight a few that have been active recently in trying to raise awareness, most are in mixed language. I have seen a few manage to get the attention of politicians and journalists.
https://twitter.com/user/status/1164959961086078977


https://twitter.com/user/status/1208843017035141121


https://twitter.com/user/status/1208828299448868865


https://twitter.com/user/status/1208376958180110336


Twitter removed the translate tweet option from the timeline but you can still translate on the tweet page itself.

 

The Germans are some of the most smart and inventive people. I am surprised they haven't contributed much in regards to ME/CFS research as of yet.

I also wonder why the vast majority of efforts is coming just from Scandinavia, the US and Japan and not from other places?

 

@borko2100 my theory is that popularity of Freud/psychonalaysis in a country correlates with the degree psychologization of illnesses like ME/CFS, with the predictable consequence of there little hope of progress.

 

I think one reason Germany and France are behind Scandinavia is or was the language barrier. The degree of psychologization of illnesses is bad but I don't know if it's worse than in other countries?

 

there were quite a few good articles about ME/CFS in Germany since october

radio report und article in Deutschlandfunk (big brodcasting station):
Chronic Fatigue Syndrom - Outdated knowledge leads to incorrect treatment
Chronic fatigue syndrome is, according to current studies, contrary to previous assumptions, a physical and not a mental illness. Those affected in Germany complain about the catastrophic situation of medical care due to the outdated level of knowledge of doctors, authorities and the government.

https://twitter.com/user/status/1184127590413586432


article in Frankfurter Allgemeine Zeitung (nationwide newspaper)
Chronic fatigue syndrome - for many it sounds like: You are just tired. Instead the patients suffer a lot. In the search for diagnosis and therapy, many go through a true odyssey. For example, our author's cousin.
https://twitter.com/user/status/1200544466916007936


"Like a never ending flu." der Tagesspiegel (big newspaper from Berlin)
https://twitter.com/user/status/1202674493375893504


Berliner Zeitung (big newspaper from Berlin)
Chronic fatigue syndrome is often not recognized -
Millions of people worldwide suffer from chronic fatigue syndrome (ME / CFS). But suffering is still underestimated and ignored by medicine and politics.

https://twitter.com/user/status/1206290282406449156

 

a tweet from a German ME-patient went viral, she used a hashtag about lonliness at christmas
https://twitter.com/user/status/1209619283598303233


There are nice comments and questions from people from outiside the ME community, one person even asked where he can donate money to this cause

the international #MEawarenesshour at twitter becomes more popular around German speaking patients, too https://twitter.com/MEawarenesshour

 

Impressive! Hope it leads to something. Any small thing.

 

German #MEAwarenessHour is on fire right now on Twitter. Still rather small but effort makes up for size.

I know sometimes it feels like screaming into the void but don't forget the record this leaves. We are too sick to organize like ActUP did so this is how we protest differently. In written form it leaves a record and engages other people, gotta make it more and more uncomfortable, indefensible even, to continue with the ongoing disaster, to make it obvious that eventually hindsight will be sober and rational and look absolutely awful for those who were derelict in their most basic obligations towards the sick.

 

#MillionsMissing Germany opened a Kudoboard to say thank you to the green party for the questions they put to the government and to call for further action.

Yesterday, #MillionsMissing Germany met the health policy spokeswoman of the green party, MP Mrs. Klein-Schmeink in the German Bundestag to hand over the Kudoboard. 150 pwME in Germany had told their stories.

It was a successful meeting. MP Klein-Schmeink will take part in the discussion on ME in German parliament in March and plans to support the #MillionsMissing action in Berlin.

Today both MP Klein-Schmeink and MillionsMissing Germany posted about the meeting.

This is what MP Klein-Schmeink wrote:

If you'd like to read the Kudoboard (German): https://www.kudoboard.com/boards/4YSSVj1y

 

Many Thanks to Millions Missing Germany!
Twitter:
https://twitter.com/user/status/1230828931177238528


https://twitter.com/user/status/1230829982236147713

 

This is so inspiring to us in France. A massive thank you to the determined German patients who are moving things forward for ME -- we'll do our best to follow suit.

 

Deutsche Welle, mixed online article with good and very weird passages

https://translate.google.com/translate?hl=de&sl=auto&tl=en&u=https://www.dw.com/de/chronisches-fatigue-syndrom-die-maximale-ersch%C3%B6pfung/a-52650545&sandbox=1

 

Freudian and dodgy psychiatry is much more mainstream in those two countries, taught to all doctors so far as I know, and not just in passing.

 

oh dear, mein gott, another quack:
http://kerstin-wollenschlaeger.com/

(she has a video on youtube claiming "
2020 CFS/ME is finally curable, because the cause is now decode")