I am so grateful my friend Geiler Scheiss made this photo session of me for “Go Blue For MECFS“.
I am acutely aware of how much suffering is happening in the world, and so aware of what is to come. The disease I have, Myalgic Encephalomyelitis or ME, is exploding worldwide. And the people who are suffering right now, if they survive, are the people most likely to get it.
Being traumatized, starved, injured and repeatedly infected with viruses, bacteria and fungi, makes people much more likely to develop Long Covid and its most severe version, MECFS.
MECFS is a disease that impacts marginalized people first.
Bisan Owda, above, describes the immunological impact of trauma, starvation, and repeat infection. Suffering is an inflammatory state, and ME is triggered by illness, inflammation and nervous system dysregulation.
ME is seen as a white woman’s disease because white women are the people who have the privilege to actually BE sick and seek care while having it.
AFAB People of the Global Majority are even more likely than white AFABs to be dismissed, gaslit, medically abused and medically neglected when they report ME symptoms.
PoTGM/BIPOC people, who are much less likely to be able to stop working and be sick for years, are instead worked to death by the systems they are forced to live under.
Many die young, undiagnosed.
At 57, I’m one year past the average lifespan of a PwME or Person with ME. I’ve been preserved by family, friends, privilege.
And I’ve been guided and educated by the ME community and the disability community. I am a better person for having this disease and being in this community, and I’m grateful for it. Strange but true. The wisdom of the disabled community is most transformative thing I’ve ever known.
The courage of our advocates is a huge part of it.
And why do we need them? Because this. Our disease has been ignored, stigmatized, denied, psychologized, and above all underfunded and under researched since the first big outbreak in 1955.
One of our valued experts Nancy Klimas, a professor of microbiology and immunology, has said: “My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my ME/CFS patients, on the other hand, are terribly ill and unable to work or participate in the care of their families. I split my clinical time between the two illnesses, and I can tell you if I had to choose between the two illnesses (in 2009) I would rather have H.I.V.”
When there is any research, it has centered white women.
It’s essential to see the BIPOC women who work to make ME known to the world and get help.
Their leadership makes such a difference for all of us.
One of our most precious advocates, activists and leaders is Wilhelmina Jenkins, who has been fighting for herself and other ME patients since 1983.
Here she’s talking to Time about Black women and Long Covid. This article features Wilhelmina, Cynthia Adinig, Ashanti Daniel and Chimére L. Sweeney, all leaders doing crucial work in ME and Long Covid.
You can find Wilhelmina on twitter, Instagram, facebook and youtube.
Her incredible 2019 piece about her experience and her work to make Black people living with ME visible is here on MEAction.net.
Here’s Wilhelmina doing a webinar for SolveME in 2012!
Jen Brea has made a huge difference in ME visibility over the past decade plus, with her film Unrest, TED talk, advocacy and more.
Jen Brea got sick, as we call it, back in 2011. Her TED talk was the first ever about ME, and Unrest won a Sundance award and many others, has been on Netflix and has helped so many people learn about ME. You can watch it for free on Youtube now!
And Quella is making learning ME science fun, and funny!
Left, amazing advocate Quella, a medical researcher and proud med school dropout. Here she describes how migration trauma primes the pump for MECFS.
Quella is teaching us all so much. Unpaid, while sick.
Living in Aotearoa, Quella has access to medical care that’s as good as it gets for us. But MECFS has no official treatment in any nation of the world. And despite being a medical student, she has been medically abused and maltreated by doctors galore.
I would not have thought it was possible to make hilarious and engaging “reels” about any of our symptoms, let alone the nastiest, but Raquel Parackal, aka Quella, does it.
Living with ME means becoming your own doctor, your own researcher, your own medical trauma therapist.
I couldn’t do it without our community. And GoBlueForMECFS, who created this annual event, is a big part of it. The folks behind the account did an incredible job this year raising awareness, foregrounding the diversity of ME patients, making graphics, and of course sharing so many GoBlueForME posts!
We have to make progress on this disease, The whole world is going to need it.
Above, a newspaper article from thirty-eight years ago today, 1986, the year I got sick.
I’m still sick, still fighting.
Thank you, thank you, thank you to Geiler Scheiss, who supported me so kindly and gently as they made the beautiful photographs.
Instagram here, it might be a little spicy for some workplaces!
Here is my last year’s GoBlueForME blog post, Last year’s highlights of all the dear ones who did GoBlueforME posts, and a lovely one from Beloved Friend, Muse and Patron Sebastian, for 2024.
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 again, I am exhausted.
