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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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/
I’m about a month out from my last “episode” so I’m gonna go ahead & call it. I tried Singulair/Montelukast this fall for shortness of breath. It’s a leukotriene inhibitor used to treat asthma & MCAS. It also has a black box warning for suicide.
Within 5 days I felt frighteningly suicidal, panicked, & desperate to get out of my body & off of this earth. I was extremely disturbed by the violence & forcefulness of these thoughts, which only fueled my panic further.
At first I chalked it up to the trauma of being so ill & isolated, to personal & global suffering, the pandemic, Palestine, etc, but when I started making a serious plan I realized I should probably stop taking Singulair in case that was affecting me.
The first time someone recommended "brain retraining" to me I was hopeful. I bought the DNRS program & faithfully did the guided meditations while walking in the woods every day, ignoring my dizziness, cognitive confusion, & trembling muscles. I, predictably, got much worse.
Since then almost everyone close to me has recommended it: my doctor, my husband, my therapist, my mom, my friends. If I have to hear another person try to sell me on this pseudoscience snake oil I will explode.
Yes, I've heard "the testimonies." Yes, I'm sure it helped your friend's cousin. Yes, I believe it can help in limited circumstances (POTS in the absence of post-exertional malaise, or MCAS once all major triggers have been eliminated). NO, IT WILL NOT CURE MY ME/CFS.