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Please tweet today (or in the next days) to the German health minister to support German pwME. You could copy this tweet: (translation: @jensspahn Research for #mecfs now! #millionsmissing #rapforgood) We're trending on Twitter in Germany! "Rap for good" is an amazing charity concert that...

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A healthy volunteer in the study made several very short clips during his stay. ... and many more. You can find them on the Solve Twitter account: https://twitter.com/PlzSolveCFS

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

Yep, I'm still confused by the claim that the Rituximab dose was halved (and this might be the reason the study had a negative result). Prof. Scheibenbogen has said this in a talk before but I haven't heard of it anywhere else. *** I'm glad that the document contains a page on children with...

Thanks, I hadn't heard of this trial before! Reading this makes me desperate.

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...

Ron Tompkins introduced the new website of the Harvard ME/CFS collaboration (online since yesterday): http://endmecfs.mgh.harvard.edu/

Yes. I still haven't made up my mind about this guy (like about many "ME experts") and it's hard for me to judge in the context of the early 90ies. After all there is hardly any evidence base for treatment (less so in the 90ies I guess) and it's easy to criticize doctors who are trying to help...

In the answer the governement says that the "Ärztekammern" are responsible. (Don't know the right English term for Ärztekammer – every state in Germany has its own local medical authority). This is what the Ärztekammer in my state wrote about CFS in 1993: Source...

True and it's really ridiculous that it keeps being mentioned by government and BPS proponents in Germany when it doesn't even exist. Although I know how harmful and misguided GET is, in a sense, at the very least the concept of GET acknowledges that patients can't exercise right away. I was in...

Good idea and they have shared DT's fundraisers and signed the open letters and reported about his work. In general it's difficult that most info on ME is in English. Advocacy means spending quite a big chunk of time and energy on translating and subtitling. But the situation as a whole is...

Here's an overview for the currant Guidelines in Germany Remember when there was the big petition in the UK b/c ME was supposed to become part of the guidelines for "functional disorders"? In Germany ME is part of: - the guideline for functional disorders - the guidelines for...

Thanks for your interest! :) The situation is difficult. When I was in the Charité, they told me that Germany is 10 years behind the UK, but it rather feels like 30. The community is small b/c people just don't get diagnosed with ME (so don't know they have it). Thus the patient organizations...

The spokeswoman for health of the green party (who was involved in sending the questions to parliament) also published a statement today: https://www.klein-schmeink.de/aktuelles/meldung/geringes-interesse-der-bundesregierung-an-der-verbesserung-der-situation-von-an-mecfs-erkrankten.html Google...

#MillionsMissing Germany published a new video today in honor of Severe ME Day. It features (among others) a severe pwME, Dr Bupesh Prusty from Würzburg university and the #MillionsMissing protest in Munich. It only has German subtitles so far, but you could use the automatically generated...

YouTube video by the14thmoonofuranus:

The ME Show: Special Edition – Severe ME Week Edited to add: