Today is May 12, International MECFS Awareness Day.
I’m already wiped out from all the online awareness stuff I’ve been doing all day. But I wanted to share some of it here, on my online homebase.
I made lots of graphics!
There’s a social campaign called #goblueformecfs I really like. The idea to use the hashtag on a post of yourself wearing or with something blue. The blue ribbon for ME dates back to 1995.
It wasn’t hard for me to wear blue!
It was a nice chance to show all my blue textile arts projects.
I shared a little about what having MECFS has cost me.
Here’s a photo taken at Femina Potens in 2010, by Zille Defeu. Midori performing and me drawing in the background.
MECFS affects millions of people of the Global Majority.
This is policy analyst, researcher, abolitionist praxis MSW and MECFS patient, Victoria Copeland. Vee is wearing her MEAction Still Sick Still Fighting shirt and lying on the Millions Missing pillowcase she made for the 2023 action in Washington DC. I asked her if I could share her picture with her info, because she deserves a treatment for this terrible disease.
This isn’t about me.
Personally. I’ve had a lot of life, a lot of lovers, and lots of my dreams came true. I’m one of the lucky ones… and one of the privileged ones. But #mecfs is a disease that strikes traumatized bodies, that strikes mostly AFAB people, including trans guys, that you have to convince your doctor you have. It’s a disease that invisibly disables and kills BIPOC people, and they almost never get help or justice. The #medicalracism is enormous. Vee deserves the life she wants and to do the work she wants to do in the world. The world needs her.
So please @goblueformecfs for young people, for aunties, for moms, for trans guys, who have never gotten any help.
Here are some resources:
Health Rising is our favorite site for ME research news
Deutsche Gesellschaft für ME/CFS (German Association for ME/CFS) Run by volunteers, that’s how fucking underfunded this disease is!
And there’s so much more to say, but I am exhausted.