Tag Archives: MEAction

Go Blue for MECFS and the Millions Missing!

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goblueformecfs May 12Today 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.

goblueformecfs May 12I 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.

photo by ZIlle Defeu of Midori performing at Feminas Potens in 2010. Suzanne Forbes is drawing in the background.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.

Victoria Copeland with Millions Missing pillowcase 2023

Victoria Copeland with Millions Missing pillowcase 2023.

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.

GoBlueForMECFS art by Victoria Aronoff aka Stupid Sloth Cards May 12 2023

GoBlueForMECFS art by Victoria Aronoff aka Stupid Sloth Cards May 12 2023

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:

MEAction’s Resource list.

Mepedia

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.

Showing up in the MEAction community as an artist and a chronically ill person.

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Jaime Seltzer of MEAction Dec 6 2021 by Suzanne ForbesI virtually attended my first two MEAction events this month.

I have been following MEAction folks on twitter for a while, as I gradually learn more about the ME/CFS community and slowly accept my ME/CFS. Jaime Seltzer, shown above, is the Director of Sci and Med Outreach for MEAction. She is one of my favorite sources of info, updates, and awareness around postviral illness. So I asked if I could draw her, and she said yes.

I tuned into a MEAction AMA to make this drawing!

It was on zoom, and it was actually the first AMA I have ever joined. It was a great conversation, with Jaime and MEAction’s press person, Adrienne Tillman. I was in bad flare and not following all the time, but the thing I truly appreciated was that Jaime kept bringing her answers back to equity and community accessibility. So glad to have someone like her as an advocate!

The next event I attended was the MEAction Winter Virtual Artist Salon.

This was a complicated event for me, coming from queer political discourse and the larger disability justice sphere. The artists gathering were almost entirely white women my age. It’s very unusual for me to experience this kind of uniform crowd.

I guess I was upset by it, and then I had to go and put my foot in it. An artist was talking about the inspiration of Chuck Close adapting his artistic practice to his disability. I spat in the soup by commenting in the chat that Chuck Close is triggering for a lot of people because of his sexual predation and so he’s not really a disability role model.

My comment was politely ignored by the mods and the chat, although the OP who’d mentioned Close dm’d me and said yes, she did know about Chuck Close being a sexual predator and she hoped she hadn’t triggered me!

Nonetheless, I stuck around to talk about my work in the context of ME. It was the first time I told my ME story in any form, and the first time I said out loud that I *was* a painter, but am no longer physically able to paint. Since I can’t stand up or raise my arms, like the snowman!

So, it’s great to hear from PwME (People with ME) who share my experience of this illness.

It was deeply moving to hear other stories of dreams and skills lost to disability, and be in a video call where most people joined from bed.

However for me it’s really important to keep my focus on the larger disability community, and disability justice for all, with BIPOC folx and sex workers to the front.

My guiding star is Imani Barbarin, of Crutches and Spice, who I support on Patreon.

I really value the teachings of The Nap Ministry, which I also support on Patreon.

And I gotta lie down now.

What is ME?