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A small "mourning walk" took place in Berlin on 8 August to mark Severe ME Day. The participants were dressed in black, with ear protection, sunglasses and held signs. After the walk of 300 metres, there was a lying demonstration. There were several press reports, even the public news in the...

The German ME/CFS Association has now published additional professional press photos. This time of a young person with ME/CFS and her mother/carer. The photos can be used free of charge by journalists worldwide by quoting the photo credits. The first press photos from last year have been very...

Postcard campaign to IQWIG and the Federal Ministry of Health (which commissioned the report): "All I want for Christmas is an IQWiG report on ME/CFS without harmful recommendations." The call is from #MillionsMissing Germany and is supported by ME/CFS patient organisations in Germany, Austria...

The Cochrane page "Stakeholder engagement in high-profile reviews pilot" has not been updated with a single sentence for over a year. I check it regularly (because the review is also influential in Germany and continues to harm people) and find it upsetting that no one at Cochrane cares enough...

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The German ME/CFS Association and Long COVID Germany have submitted a "National Action Plan on ME/CFS and Post-COVID Syndrome" to the Federal Government. The aim of the action plan is to implement the measures mentioned in the coalition agreement and other necessary measures with urgency. The...

Before the hearing started, over 230 messages from pwME and their loved ones were handed over to the committee members. This had to be done by the 16-year-old daughter of a petitioner, as the petitioners themselves are too severely affected to be there.

I found the opening statement, for which there was only 5 minutes, an excellent summary and introduction. So here is an English translation:

The German ME/CFS Association has published an article on the hearing with further links (German): https://www.mecfs.de/anhoerung-petition/ Automatic English translation of the article: https://www-mecfs-de.translate.goog/anhoerung-petition/?_x_tr_sl=de&_x_tr_tl=en&_x_tr_hl=de&_x_tr_pto=wapp...

Announcement by the team #SIGNforMECFS. Prof. Scheibenbogen from the Charité will also take part. Edited to add translation of the Facebook post:

The hearing on the #SIGNforMECFS petition will take place on Monday 14 February at 12 noon (German time) in the Bundestag. The session will be broadcast live on the internet at www.bundestag.de. From 15 February it will be available in the media library at www.bundestag.de/mediathek. More...

Signed.

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...

The German petition was written and organized by four (severely affected) pwME. You can find them here: https://signformecfs.com/#team-1

Press release by the team of SIGN for ME/CFS in English: https://www.signformecfs.com/downloads/signformecfs-presseinformation-2021-11-16-EN.pdf

This is what I know about the Geman petition: - The petitioners have created a website in German and English for the petition - with information, detailed instructions and materials (the instructions were also translated into more languages by supporters) - Materials like lists, handouts and a...

Just found out that there's an English translation of the petition: https://www.openpetition.eu/at/petition/online/me-cfs-recognition-medical-care-protection-for-affected-persons-and-research-funding Now at 71%.

In addition to 57,766 signatures online, 35,267 signatures were collected on lists. The final result is 93,033 signatures collected in 28 days. :) https://epetitionen.bundestag.de/petitionen/_2021/_04/_09/Petition_122600.$$$.a.u.html

The petition ended after 28 days with 57,766 signatures online. The signatures on paper lists will be added, they're still being counted by the Bundestag. Thank you to everyone who signed and thank you to Science for ME for sharing the petition on social media. :hug: