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#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...

This year #MillionsMissing global protests will take place between May 9th–17th. #MillionsMissing Germany announced the participating cities from Germany today: :hug: Aachen, Erlangen, Freiburg, Gütersloh, Halle, Münster and Ravensburg :hug: These are more cities than in the years before (we...

Letter from the HHV-6 Foundation regarding the fundraiser:

A group of patients started a fundraiser for Dr. Bhupesh Prusty's research at Würzburg University, Germany. There's no (zero Euro) funding for ME/CFS research in Germany. All funds raised will go to the non-profit HHV6 Foundation and then be donated to Dr. Bhupesh Prusty's lab for his...

In my personal experience from being involved with several patient groups, it's often the severe patients who do a lot of the volunteer work from bed. From my experience it's possible to mobilize some healthy allies and milder pwME to show up at single events once a year but it's rather rare...

@debored13 I'm confused about your thread. Most of the ME activism is done by very sick volunteers. A lot of the ME organizations only consist of sick volunteers and have no paid staff. As an example #MillionsMissing Germany is mostly run by bedridden pwME. Are you aware that Jen Brea has done...

The IOM report (page 16) lists these three studies:

New video from #MEAction: #NotEnough4ME Dr. Koroshetz!

I know, the name doesn't sound promising, but the meeting is actually on "chronic fatigue" and ME is one of the topics. Amongst others Drs Scheibenbogen, Behrends, Nacul, Lacerda, Mella, Prusty take part. It's the first international conference that includes ME in Germany that I know of...

I guess this is the report: https://www.s4me.info/threads/report-of-the-nandsc-working-group-for-me-cfs-research-now-online.11122/

Yes, there was a delay, it was written in 2017 and published in 2018. If you check out the URL, this version was published in June 2018. It was first published in February 2018, then the Deutsche Gesellschaft für ME/CFS lodged a successful complaint about the chapter on CFS. The edited version...

Thanks! :) Great summary – just two tiny points: 1. The guideline Müdigkeit was published in 2018 (not 2017). 2. Just to be sure, as it might not be obvious: The Cochrane review is mentioned in a separate chapter on CFS in the guideline Müdigkeit, so the exercise recommendation is explicitly for...

Thanks for your effort @Michiel Tack! Germany Guideline Tiredness (2018) – chapter on CFS: https://www.awmf.org/uploads/tx_szleitlinien/053-002l_S3_Muedigkeit_2018-06.pdf, page 45 Guideline Functional Disorders (2018)...

There was some media attention for the charity concert (this is a selection). Great short coverage on national tv: https://www.zdf.de/nachrichten/heute-plus/videos/rap-gegen-erschoepfungs-syndrom-100.html The same public broadcasting station also tweeted and posted on Facebook...

#MillionsMissing Germany is at the concert with an info booth. Donations go to a German ME patient (who is in her 30ies and worked in the music business before she became too sick and is a friend of the artists) and the Open Medicine Foundation. The music acts are the most popular rap and hip...

Screenshot from the livestream: