Therese

Health justice. ME + Long Covid activist. #pwME and #POTS. Living life deliberately from my bed. Bunny mom. Partner of @lexanderthomp. (She/her)

[Therese @ThereseARus]

@the_tessallator Can I ask what specific nyc neuro ophthalmologists you suggest for these issues?

[Therese @ThereseARus]

@Jhammy9104 @ahandvanish Can I ask what neuro opthamogist in nyc was helpful to you? I live in nyc and am also having the issue Hannah describes (it has worsened since my tethered cord surgery several month ago).

[#MEActionMaryland @MEActMaryland]

#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.

[Ben HsuBorger @bhsuborger]

#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. https://t.co/7qcshpVIs4

[Adriane Tillman @TillmanAdriane]

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.

[Therese @ThereseARus]

Arlen is incredibly strong, resilient, and worthy of care. Please re-tweet and donate if you can.

[#MEAction Network @MEActNet]

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! https://t.co/P6TItKzvAU

#disability #MECFS

[#MEAction Network @MEActNet]

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! https://t.co/P6TItKzvAU

#disability #MECFS

[Therese @ThereseARus]

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

[CDC Emerging Infections @CDC_NCEZID]

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 https://t.co/1sC6UJ9ptA #MECFSAwarenessDay

[#MEAction Network @MEActNet]

MEACTION Press Conference Washington DC May 12th 2023 https://t.co/WScppqqoqZ

[#MEAction Network @MEActNet]

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.

[Therese @ThereseARus]

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

[Therese @ThereseARus]

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

[Therese @ThereseARus]

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 @ThereseARus]

I just wrote a review on 2nd Cutting Timothy Hay https://t.co/YKxEY1fJxz via @yotpo

[Meghan O'Rourke meghanor.bsky.social @meghanor]

🎉Thank you to @newyorker for naming THE INVISIBLE KINGDOM one of the best books of 2022! 🎉https://t.co/OC2AzlwiyO

[Liz Burlingame @LizMEActGA]

@Dakota_150 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

[Billy Hanlon @bhanlon15]

"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...."

https://t.co/MCQm9g2T0j

[Therese @ThereseARus]

@meactionscot @nee_massey @therealmecfs 👏

[Ed Markey @SenMarkey]

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.

[zeynep tufekci @zeynep]

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.