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)
 
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.








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?
 
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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Chronic Fatigue Syndrom - Outdated knowledge leads to incorrect treatment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 Those affected in Germany complain about the catastrophic situation of medical care due to the outdated level of knowledge of doctors, authorities and the government.



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.


"Like a never ending flu." der Tagesspiegel (big newspaper from Berlin)


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.

 
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a tweet from a German ME-patient went viral, she used a hashtag about lonliness at christmas


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
 
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lycaena said:
a tweet from a German ME-patient went viral, she used a hashtag about lonliness at christmas


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
Click to expand...

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:
Yesterday I met with the initiative @MMissingGermany, who handed me a kudoboard with letters from over 150 ME/CFS affected people. A very moving moment for me. The letters and stories made it clear again: the care situation for people with the diagnosis ME/CFS in Germany is precarious. There is a lack of specialized care services, there is no adequate continuing education for medical professionals, and there is no research funding for this disease. It is therefore high time to intensify research here. Sick people need the care to which they are entitled and must no longer be subjected to treatments that are not good for them. I will continue to advocate this in Parliament. #MillionsMissing #MEcfs

This is the link to Kudoboard:
https://www.kudoboard.com/boards/4YSSVj1y
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If you'd like to read the Kudoboard (German): https://www.kudoboard.com/boards/4YSSVj1y
 
Deutsche Welle, mixed online article with good and very weird passages
ME/CFS is regarded as the disease of the modern meritocracy. The WHO has classified ME/CFS as a neurological disease since 1969. Nevertheless, many physicians who have been practicing for decades have learned nothing about the disease pattern in their studies because it did not exist at that time. Especially people who have a high expectation of performance from themselves and constantly overstrain their body without resting are susceptible.(deepl)
Click to expand...
:banghead:

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
 
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