Health justice. ME + Long Covid activist. #pwME and #POTS. Living life deliberately from my bed. Bunny mom. Partner of @lexanderthomp. (She/her)
Joined November 2019
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Therese retweeted
#BethMazur is one of the main reasons many of us are in advocacy today. She helped create a more community-focused vision that resonated with us all. She wasn't in it for her name to be known; she was in it for us all to get better & get there by treating each other well.
Shattered, heartbroken. Can't find the words to express my grief. @MEActNet has meant the world to me and that's because of Beth's work to build #MECFS community and fight for change. Thank you, Beth. Rest in power. @meactionga
Therese retweeted
#BethMazur found me flailing on twitter in 2015 & convinced to join a group of rebels at #MEAction. She was the first & last person I would go to for advice. She was there when I couldn't see light. I want to punch a hole in universe. I miss you Beth. meaction.net/2023/12/22/sad-…
Therese retweeted
Feel like I haven't exhaled since hearing about the death of #BethMazur.
Clinging to every post about her because together we sing the same thing: she was a quiet hero for the #MECFS community, and such a generous friend to everyone blessed to know her.
Arlen is incredibly strong, resilient, and worthy of care. Please re-tweet and donate if you can.
We were asked to share this fundraiser for Arlen Daza, a #pwME & #EDS & #CCI.
Arlen has immediate housing and food needs. Funds will go towards housing and food while seeking desperately-needed medical care.
Please give and share! gofundme.com/f/revive-arlen
#disability #MECFS
Therese retweeted
We were asked to share this fundraiser for Arlen Daza, a #pwME & #EDS & #CCI.
Arlen has immediate housing and food needs. Funds will go towards housing and food while seeking desperately-needed medical care.
Please give and share! gofundme.com/f/revive-arlen
#disability #MECFS
We don’t need the CDC to light its campus blue. We need them to educate doctors about ME, to track long Covid and ME, to stop erasing the pandemic. We need them to prioritize disabled lives through policy, not performance. #MillionsMissing @MEActNet
May 12 is #MECFS International Awareness Day. We stand together with the millions of people who suffer from ME/CFS & other chronic illnesses. Learn more about ME/CFS bit.ly/3p2bng6 #MECFSAwarenessDay
ALT Medical doctor holding up a purple-blue ribbon
Therese retweeted
MEACTION Press Conference Washington DC May 12th 2023 teapawt.net/i/broadcasts/1yoJMZEDv…
Therese retweeted
We will be sharing many more photos and videos in the days ahead, but we wanted to make sure and share some pictures for you tonight. We know that some of us cannot manage to watch videos. This is a small sampling of photographs and pillowcases from today's #MillionsMissing.
ALT Collage of 4 photos. Two photos show the Washington monument with cots covered in red blankets in front. A close up of one blanket shows it says still here still sick. The final photo shows a cot with a in memory of those we have lost sign.
ALT ID 2: Six decorated pillowcases with various designs and art
ALT One photo of the Washington Monument with rows of cots with red blankets if front and 3 photos of decorated pillowcases
From Ishtar Laguna.
I resonate deeply. 🧵
“It is May 12th…
I can’t advocate.
I have nothing to add.
My heart is sad.
My mind is clouded.
I will get better, just not today.
Today, I retreat.
I clean a bookcase.
I eat a meal.
I watch a movie. 1/2
But I don’t fight my war for a better future.
My body has endured too much, my mind too.
Sometimes, my heart breaks, and it is ok.” 2/2
#MillionsMissing #millionsmissing2023
#WorldMEDay2023
@MEActNet
@itsbodypolitic
From Ishtar laguna. I resonated deeply. 🧵
“It is May 12th.
I can’t advocate.
I have nothing to add.
My heart is sad.
My mind is clouded.
I will get better, just not today.
Today, I retreat.
I clean a bookcase.
I eat a meal.
I watch a movie. 1/2
Therese retweeted
🎉Thank you to @newyorker for naming THE INVISIBLE KINGDOM one of the best books of 2022! 🎉newyorker.com/best-books-202… – at New Haven, CT
Therese retweeted
Incredible. Wow. THIS. These are my people -- they are forced to jeopardize their health in order to make their voices heard. Respect and heartfelt thanks to these #MEcfs warriors! @ThereseARus #stillsickstillfighting #millionsmissing #pwME @meactionga
Therese retweeted
"We need much more funding for M.E. research. Despite prepandemic estimates ranging from about one million to over two million sufferers, National Institutes of Health funding for M.E. research has been meager, now a mere $17 million per year...."
nytimes.com/2022/10/27/opini…
Therese retweeted
ME/CFS was America's hidden health crisis long before the pandemic. Now, COVID long haulers are experiencing its debilitating effects. That's why I'm pushing for $27 million to study the intersection of COVID and ME/CFS, and for medical education on the diagnosis and treatment.
Patients with myalgic encephalomyelitis, or chronic fatigue syndrome (ME/CFS); their caregivers; and the few doctors who treat them have spent years fighting for medical legitimacy. The coronavirus pandemic has now forced the issue, writes @edyong209: theatlantic.com/health/archi…
Therese retweeted
It's been a week since this White House protest for ME/CFS and Long Covid. I've been following up with a subset of them.
Not one is back to "baseline"—an already limited amount of activity they could undertake. "Post-exertional malaise" (PEM) is so baffling and counterintutive.
Therese retweeted
🚨I wrote about ME/CFS (chronic fatigue syndrome). The US has millions of people with it & maybe two dozen docs who specialize in it.
This medical crisis needs urgent attention, esp. now COVID has hugely increased the number of long-haulers. 1/
theatlantic.com/health/archi…
Therese retweeted
Check out the powerful advocacy happening at the local level in NYC w/ @LongCOVIDNatl. Thx to #MEAction NY's @ThereseARus and many other #LongCovid and #MECFS advocates and experts who helped make this hearing happen!
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