Hi, I'm Emily! I used to be a documentary filmmaker, teacher, environmental activist, artist, adventurer, wife, friend. Now I spend 22 hours a day in bed, too sick to interact w/ the world, too sick to watch films, much less make them. #MillionsMissing #MECFS #LongCovid 1/
Over the past 3 years of the pandemic, millions more have joined me in this abyss of illness. We’ve been swept under the rug by the government, doctors, & society. We need research funding, financial support, treatments, a cure. We need our lives back. #StillSickStillFighting 2/
Thank you to @MEActNet & @itsbodypolitic for putting together this stunning protest on the National Mall today to help make the millions of us who have disappeared from our lives visible. 3/
We were invited to mail in personalized pillowcases to help tell our stories of loss, grief, resistance, & resilience, & I'm so proud to have mine displayed alongside many others in front of the Washington Monument (thank you @dsethlewis & @caseygd43 for capturing photos!) 4/
While the world may want to forget the pandemic, it's far from over for us or for the many new people still joining us every day. Many people still have no idea they're risking a lifetime of disabling illness with every infection. Please protect yourself & your community! 😷 5/
Thank you to everyone w/ #MECFS & #LongCovid using your precious energy to protest in person & from home today. And a huge thank you to our abled allies & caregivers whose help we're so grateful & desperate for. 🙏
6/
And of course, I'm sending out so much love to everyone too ill to participate at all today. When I was making my pillowcase, I was thinking of you. Every day, I think of you. 💙
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In honor of 🔥Disability Rage Month🔥 let’s talk about the misogyny underpinning the #GreatestMEdicalScandal. If you haven’t watched, the Golden Girls #MECFS storyline is a must-see highlighting the misogynistic BS ppl w/ ME have dealt w/ for decades:
The most infuriating thing about our girl Dorothy’s diagnostic odyssey back in 1989 is <<how very little>> has changed over the last 35 years 😫
Despite research advancements & scientific consensus that ME is a biological illness—not a psychological disorder—much of clinical practice remains entrenched in Freud’s time, still treating ME as hysteria in all but name.
This 1990 article from The Guardian tells the story of a 12 year old w/ severe ME who was taken from his family, kept in hospital against their will, & dunked in a pool to make him swim despite being too weak & ill to move. Another modern day witch drowning #GreatestMEdicalStory
“Ean Proctor lost his voice in October 1987 when he was 12. It still has not come back so he cannot talk about his battle against Myalgic Encephalomyelitis, the disease which deprived him of speech & left him almost completely paralysed for two years.”
#GreatestMEdicalScandal
“He communicates w/ hand & face gestures… while his mother, Barbara, recounts a struggle, not just w/ a debilitating illness but also against a medical profession divided over whether ME exists, &, if it does, over the causes & possible treatment.”
My partner has Cov1d again. 3rd time in 8 months. And he changed his whole life to avoid it for me. Masks indoors w/ a fit tested respirator, avoids crowds, quit teaching, no restaurants/movies, no socializing in ppl’s homes other than a few times a year when he travels w/o me.
But almost every time he takes a seemingly small risk (driving (masked) with a friend, having coffee on a bench with a client, staying at a friend’s house overnight), he ends up with Covid.
This is so unsustainable.
This is also the only time he’s tested positive. We know he had it the other times bc of symptoms + close contact w/ a known case.
People taking zero precautions must be getting Cov1d 3-4 times a year, even if they think they’ve never had it bc they don’t test/the tests suck.
We need to invest in the longtime ME research NIH has historically blacklisted or we could easily watch $10B disappear without actually solving LC. Moonshot legislation needs to explicitly address & correct NIH’s institutional bias against funding bio research into ME.
I’ll be voicing my concerns & hope all #pwME & LC will too. Feedback on the draft proposal should be sent to LongCOVIDComments@help.senate.gov. Due by 4/23.
And of course in addition to needing ME research to effectively solve LC, #pwME are obviously way overdue help. And all the people who will develop ME from an undocumented infection or a new pandemic in the future must not be locked out of access to care.
Decision-making (which you have to do tens of thousands of times a day) becomes slower, more laborious, & more dangerous. Everything from driving to talking to moving my body to figuring out what to eat becomes harder. Things that used to be easy & automatic… aren’t anymore.
Easily understanding & empathizing w/ other people’s perspectives & emotions, & then responding quickly & appropriately rarely happens fast enough anymore to have the kinds of fluid, animated, meaningful conversations I used to enjoy with loved ones.
On the last day of each month people w/ #MyalgicEncephalomyelitis (#ME #MECFS) & our allies are invited to share art of endangered flowers to call attention to both ME & these often ignored victims of the extinction crisis.
#MillionsMissingFlowers #togetherendangered
For February I painted the flame azalea or Rhododendron calendulaceum, which grows in the Appalachian Mountains near where I grew up in Virginia. 2/
I was born in 1985, when CO2 in the atmosphere was 345ppm (on the cusp of unsafe) & ME was beginning to blow up as a devastating neuroimmune epidemic. I had no idea how these two crises & the way ppl in power would refuse to react appropriately would shape my life. 3/