• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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Search results

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    Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!

    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
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    Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!

    :)
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    Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!

    The picture was sent by a severely affected pwME. www.signformecfs.com
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    Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!

    In addition to the online signatures, many pwME and supporters are collecting signatures on lists. The lists can be downloaded here: Signature list (English) Handout (English) German versions: Unterschriftenliste Unsere Petition als Handout Kurzes Informations-Handout über ME/CFS Merkblatt...
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    Petition 122600 to the German Bundestag: Healthcare, Scientific Research and Political Support for ME/CFS Sufferers!

    An update from the petitioners: October 22nd, 2021 After a little less than ten days, #SIGNforMECFS passed the 10,000 online signatures mark this morning. We are very grateful for the support. Thank you very much! The best news is: With the current development, achieving the quorum of 50,000...
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    Germany: ME/CFS in Germany

    Call to action: international support for German ME-petition to the government needed Today a petition to the German Bundestag went online. Anyone from any country at any age can sign. The German ME community is quite small, as ME is still very unknown here and we would be very happy about...
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    Mikes EU Marathons for Invest In ME

    Hamburg Marathon is today! It has just started (9am German time). @Mike Harley can be cheered on here and on social media. :hug: - Facebook: https://www.facebook.com/mikeseumarathons - Twitter: https://twitter.com/MikesEUmaras - Instagram: https://www.instagram.com/mikeharley82 - Donations...
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    Mikes EU Marathons for Invest In ME

    New blog post from the German ME/CFS Association about Mike's EU Marathons. German original: https://www.mecfs.de/27-marathons-fuer-me-cfs Automatic English translation: https://translate.google.com/translate?sl=de&tl=en&u=https://www.mecfs.de/27-marathons-fuer-me-cfs
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    Mikes EU Marathons for Invest In ME

    Just wanted to leave the link to "Mike's EU Marathons" fundraising page here again. All of the donations go to Invest in ME. (A lot of pwME are struggling financially, so please ignore if it's not appropriate for you.) From the page: https://www.justgiving.com/fundraising/mikeseumarathons
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    Germany: ME/CFS in Germany

    Mike (Mike's EU Marathons) has interviewed two pwME and the German Association for ME/CFS about the situation in Germany. Interviews in English and German. Mike is running the marathon in Hamburg on 12 September. A huge thank you. http://www.mikeseumarathons.eu/germany.html
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    Mikes EU Marathons for Invest In ME

    ME in Germany Mike has interviewed two pwME and the German Association for ME/CFS. Interviews in English and German. Mike is running the marathon in Hamburg on 12 September. A huge thank you. http://www.mikeseumarathons.eu/germany.html
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    New ME/CFS Documentary

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    New ME/CFS Documentary

    The German/French TV channel ARTE premieres an ME/CFS documentary tonight at 10 pm. Subtitles are also available in English, Italian and Spanish. It can already be viewed online: https://www.arte.tv/en/videos/096283-000-A/living-with-chronic-fatigue-syndrome/ With three pwME, one pwLC and...
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    Germany: ME/CFS in Germany

    #MillionsMissing Germany has organized a postcard campaign. For international ME Awareness Day, pwME and allies will send postcards to the parliaments of the 16 federal states. The campaign is supported by all German patient organizations. https://www.millionsmissing.de/mmdpostkartenaktion2021
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    European ME Coalition (EMEC)

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    #MillionsMissing 2020 in Germany

    The main action at the international ME/CFS-day in Germany was, that the health minister and more politicians got postcards from pwME. There was also some great press coverage. You can find a (non exhaustive) list of media reports, videos, statements by politicians, press releases etc. at the...
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    #MillionsMissing 2020 in Germany

    As the street protests had to be cancelled due to the Corona pandemic, #MillionsMissing Germany announced a new action today: postcards to the Health Minister. Quick English translation: "Jens Spahn, you got mail!" | #MillionsMissing4Action ❤✊ The protests around the international ME/CFS Day...
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    #MillionsMissing 2020 in Germany

    Berlin and Munich will also organize #MillionsMissing actions! :) We are now at nine cities in Germany: Aachen, Berlin, Erlangen, Freiburg, Gütersloh, Halle, München, Münster and Ravensburg. If you're from Germany (or if you're not but would like to support the actions), please send messages...
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    Crowd funding for Bhupesh Prusty

    Yep, the fundraiser is legit. The four organizers are well known patient advocates in Germany. In addition, they don't get any of the donations. The donations go directly to the HHV-6 Foundation and from there to Prusty's lab at Würzburg university. Letter from the HHV-6 Foundation regarding...
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    #MillionsMissing 2020 in Germany

    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...
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    Fundraiser for Dr. Prusty's Research (Würzburg University)

    A group of patients has started a fundraiser for Dr. Bhupesh Prusty's research at Würzburg University, Germany. All funds raised will go to the non-profit HHV6 Foundation and then be donated to Dr. Bhupesh Prusty's lab for his research. Dr. Prusty gave a talk at the NIH ME/CFS conference last...
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    Positive CFS/ME biomarker test

    Hi, I haven't been logged in for a while. Prof. Guse from UKE Hamburg gave a talk at an ME conference at Griffith University, Australia in November 2018. The talk wasn't on ME, the title was: "ADENINE NUCLEOTIDE-DEPENDENT CALCIUM SIGNALLING IN T-LYMPHOCYTE"...
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    FAQ zum Thema ME/CFS

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    #MillionsMissing 2019 in Germany

    #MillionsMissing Deutschland hat heute anlässlich des int. Severe ME Day das Video »Eine Krankheit im Verborgenen« veröffentlicht: Mehr Hintergrundinfos gibt es hier: https://www.millionsmissing.de/2019/08/08/neuer-film-eine-krankheit-im-verborgenen/
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    #MillionsMissing 2019 in Germany

    #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...
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    What's everyone's opinion of Dr. Bieger?

    Hi @Cipher, I haven't been to Dr. Bieger, but to my knowledge he's nearing retirement and not taking on new patients. But others here might know more. Best wishes!
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    #MillionsMissing 2019 in Germany

    Artikel der Deutschen Gesellschaft für ME/CFS über die Aktionen mit Links zu Medienberichten: https://www.mecfs.de/int-me-cfs-tag-millionsmissing-2019/
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    #MillionsMissing 2019 in Germany

    The fan club of Berlin football team Hertha BSC has shown its support for pwME in the Olympiastadion Berlin. The banner reads: "ME/CFS: You can't ignore 300.000 people with ME" They've now also published an article in English (can be found below the German version)...
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    #MillionsMissing 2019 in Germany

    The visibility actions in Germany were amazing and we had more press about ME than ever before. :) Livestream from the #MillionsMissing visibility actions in Berlin und Munich: https://www.youtube.com/channel/UCEaUZZDxY72llnlHmpZ2dJg Photos from Berlin, Munich und Halle...
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    #MillionsMissing 2019 in Germany

    Fotos von den #MillionsMissing-Aktionen in Berlin, München und Halle: https://meaction.smugmug.com/MillionsMissing-2019/Europe/Germany Livestream aus Berlin und drei Videos aus München: https://www.youtube.com/channel/UCEaUZZDxY72llnlHmpZ2dJg Videos aus Halle...