#BedFest is an international art, performance and music festival… from bed!
Join us for the first-ever #BedFest. The website will go live on May 6th!
🎵 May 6th, 2017
🎵 Worldwide
🎵 Virtual
🎵 Free
🎵 Art, music, poetry, performance, song
🎵 Created by people with Myalgic Encephalomyelitis
Join the phone call to hear from the artists, enjoy the art and music together and to take place in a discussion about what it means to express yourself as someone with ME.
Saturday, May 6th
– Berlin: 8pm
– London: 7pm
– NYC: 2pm
– San Francisco: 11am
Join through Bluejeans video-conference:
https://bluejeans.com/424535500
Join through any browser or computer:
https://bluejeans.com/424535500/browser
Join through Lync:
https://bluejeans.com/424535500/lync
Join through Room System:
Video Conferencing System: bjn.vc -or-199.48.152.152
Meeting ID : 424535500
To join via phone :
1) Dial:
+1.408.740.7256
+1.888.240.2560
+1.408.317.9253
(see all numbers – http://bluejeans.com/numbers)
2) Enter Conference ID : 424535500
Why We Keep Telling the Story of ME to the Press
June 6, 2023
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Our press work continues to drum a strong beat as we tell the story of ME everyday to the media. We will continue to fight for our community’s decades of expertise living with, treating and researching ME to be heard, and integrated into our government’s Long COVID response. We refused to be erased from the
1 thought on “#BedFest is almost here – Join the call Saturday!”
It was splendid to see everyone, although I probably missed the first 5 mins or so. Thank you for your kind mention of my name and work. That was most gracious.
And gratitude, too, to the patients who shared some difficult truths. They hid any discomfort they were feeling well and held it together – so more power them! That is not an easy thing to do; especially with a sympathetic audience for a change. Certainly as tough as dealing with Dr. X (the known enemy of multiple “invisible” patients) or Ms. Y (from your government office, the one who’s never given a flying fig about you as you have attempted to share some miserable times & facts with her.) Both characters are composites of the many we’ve all run across in a lifetime of seeking appropriate treatment and assistance.
But particular mahalos to all of you who worked to bring this to reality. It’s difficult to maintain a flow and rhythm and to keep technical glitches to a minimum, and you managed for the most part to pull that off – quite a trick indeed.
Enjoy your well deserved rests with our sincere appreciation.
Aloha on behalf of multiple global M.E. Patients.
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