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We're upright in all but body!

#BedFest begins today - a worldwide hashtagged festival of art, music, poetry, performance and multifarious creativity by people living with (severe) M.E. Voices that are seldom heard, people who are rarely in the world, called forth and gathered by #MEAction and its volunteers. Let's escalate M.E. Awareness!

I am so moved by people's bios, their guts, their drive, their sense of beauty, and the vulnerability they dare here. Teachers, engineers, students, pilots, artists, nurses, social workers, and an opera singer; kids, teens, adults of all ages; mothers, fathers, lovers, friends; people who led active lives, worked, grew, hiked, carried shopping, played the bagpipes.

The impact of having M.E. is made more devastating by the disregard we meet, the isolation, the hurdles we have to crawl through in order to get support. We're not desperate because we're ill (hard as it is), we're desperate because we're still and always waiting for the clear and unequivocal recognition of M.E. as a physical disease, for proper funding of biomedical research, and, often enough, simply to be listened to. That we need a campaign like #BelieveME in 2017 is shameful.

#BedFest begins today! Eyelids on rusty hinges just now, but can't wait to see my iPad screen light up with shared imagination over the next few weeks. We're upright in all but body!

Comments

Hello, I read this and my first thought was,I want to share me here!. I'm crashed today, I don't have the brain to share today. I will try another day. It's awesome to know you get it....is this really real?
 
Sorry you crashed, hope you're feeling a bit better Pen2? Only pop in to share here occasionally, when energy allows. Can't say I understand fully how things work here, so hope you find this message: thank you for writing/responding when you were so poorly. Wonder what you meant with 'is this really real'?
 
Hello again. I wanted to answer your question. What I meant by, " is this really real", is actually finding PR and so much support from people who are going through this hard life with ME/CFS! We need support. No one knows how we really feel and what our life is like but us. So my answer is how happy I am to find this support and recognition!
Thanks for responding.
 

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marjojo
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