Erin Lee
@erinmarilee.bsky.social
220 followers 230 following 160 posts
ME/CFS since 2001 | Passionate about improving med ed, increasing access to care, and finding a cure | Faith, Hope, Love
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Reposted by Erin Lee
effies.bsky.social
Wanna to go to a virtual No Kings rally that focuses on healthcare (with a side of "vaccines are good, actually" and "eugenics is bad, actually")?

Organized by disabled folks who can't go to an in-person event.

Join Saturday at 2:30pm Pacific time, zoom link: us06web.zoom.us/j/8467741742...
Join our Cloud HD Video Meeting
Zoom is the leader in modern enterprise cloud communications.
us06web.zoom.us
erinmarilee.bsky.social
My poor little brother is going to have nightmares about the poor mountain bikers in Georgia taking joros to the face over and over and over again.

And I’m going to make such yummy smoothies when I come out of this crash!
erinmarilee.bsky.social
You know when your symptoms and the adrenaline spike together, so you text a family member everything you know about joro spiders and read 30 different smoothie recipes, because you don’t want to sit with the symptoms, or doomscroll, and you shouldn’t move a muscle? #MECFS
erinmarilee.bsky.social
One of my dreams is to improve enough to throw myself into advocacy for pediatric IACC work. It’s been 20+ years and I still remember how traumatizing it was to get these illnesses as a kid. And it fills me with a deep guttural rage to see kids getting it today and not getting appropriate care.
erinmarilee.bsky.social
This made me tear up. What wonderful news!
batemanhornecenter.bsky.social
Milestone moment for ME/CFS awareness!
The American College of Sports Medicine has added a section on ME/CFS to its Exercise Guidelines for the first time ever, thanks to @workwellfoundation.bsky.social and collaborators.

Read more: https://bit.ly/46P31vP
#MECFS #ACSM @acsm1954.bsky.social
"History Made! The American College of Sports Medicine includes ME/CFS in global exercise guidelines for the first time."
erinmarilee.bsky.social
No, don’t delete your post. It’s good for people to see how impossible MCAS is. I want to do more thinking and find some helpful ideas!
erinmarilee.bsky.social
Does it need to be close to a grab and go situation? Or can it have a few prep steps?
Sweet potato toast, with smashed avocado, garlic salt, and smoked salmon?
erinmarilee.bsky.social
Oh interesting! I could shift when I take mine to right after my morning writing session. See if that makes a difference.
erinmarilee.bsky.social
I take a daily aspirin and I think a few of my other meds are anti-inflammatory. This all got a lot worse after a concussion several months ago that I haven’t fully recovered from. I’ve got one of those chemo ice cap things that seems to help cool the brain down, otherwise tons of rest.
erinmarilee.bsky.social
This and all the replies are so validating. I keep trying to write but it gives me a stupid fever and knocks me out for days! I’m now experimenting with no more than 20 minutes a day of writing. Can I write anything decent or timely in such a small increment? Who knows! Gotta try anyway!
Reposted by Erin Lee
exceedhergrasp1.bsky.social
You simply cannot do as bad a job by accident as these ppl do on purpose

Start an advocacy campaign, run for something-- you have something they don't

An earnest desire to help, to change things for the better. Compassion and integrity
angryblacklady.blacksky.app
you are no longer allowed to have imposter syndrome.

not after this bari omgwtf weiss situation.

you're literally not allowed to feel imposter syndrome ANYMORE
Reposted by Erin Lee
meactnet.bsky.social
We know that there are a lot of protests happening. Stay safe everyone! We have a protest guide available! www.meaction.net/_files/ugd/b...

It includes planning an accessible protest & attending an in person protest when you have ME or similar.

#pwME #Protest #MECFS #ChronicIllness
Photo from #MEAction Still Sick Still Fighting protest in front of the White House showing protesters lying on the sidewalk. Text above: MEAction protest guide available. Text below: Part 1: For people who are planning a protest/activism to include people with ME Part 2: For those planning to attend an in-person protest that have complex chronic illness
erinmarilee.bsky.social
The child of the shooter who attacked my faith community on Sunday is a victim too. He has medically complex, expensive needs and has lost his father. Please help me #DoSomething and raise funds to help him. I am grieving, but we can still make one thing less bad.

www.givesendgo.com/helptheSanfo...
Help the Sanford Family
My name is Dave. Like all of you, I was shocked by the murders at the LDS chapel in Grand Blanc, Michigan, on September 28. Multiple families were left griev...
www.givesendgo.com
Reposted by Erin Lee
putrinolab.bsky.social
A few days out from #UNGA80, I wanted to reflect on the session we took part in and the media responses since. Mount Sinai was one of the 150 organizations that signed the global pledge to advocate for healthy indoor air. The event itself featured four panels of speakers who
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erinmarilee.bsky.social
I am so sorry, Ezra. Thank you for the energy you spent articulating this so well. And thanks for the light you spread here.
erinmarilee.bsky.social
This whole thread is so good and relatable. The lack of support, the incredible community of sufferers, the radical reorienting of life and purpose, the incredible suffering at the mild/privileged end of the spectrum and what that implies for the very severe/marginalized end of the spectrum.
ezra.zone
today is the three-year anniversary of the covid infection that turned into long covid. it has completely rewritten the course of my life. it has brought me untold levels of physical suffering. it has devastated my mental health.
Reposted by Erin Lee
exceedhergrasp1.bsky.social
The thing about all of this as a ND person and as a person with an infection-associated chronic illness: all of this feels like a bad doctor's visit where the clinician swears that the most important thing is that you as the patient "feel heard"

It's not. It's that the patient BE HELPED.
Reposted by Erin Lee
aclu.org
ACLU @aclu.org · 23d
Jimmy Kimmel was taken off the air after our government threatened a private company with retaliation, marking a dark moment for free speech in our nation.

More than 400 artists across our nation signed on to say: We refuse to be silenced by those in power.
We the people must never accept government threats to our freedom of speech. Efforts by leaders to pressure artists, journalists, and companies with retaliation for their speech strike at the heart of what it means to live in a free country.

Last week, Jimmy Kimmel was taken off the air after the government threatened a private company with retaliation, marking a dark moment for freedom of speech in our nation. In an attempt to silence its critics, our government has resorted to threatening the livelihoods of journalists, talk show hosts, artists, creatives, and entertainers across the board. This runs counter to the values our nation was built upon, and our Constitution guarantees.

We know this moment is bigger than us and our industry. Teachers, government employees, law firms, researchers, universities, students and so many more are also facing direct attacks on their freedom of expression.

Regardless of our political affiliation, or whether we engage in politics or not, we all love our country. We also share the belief that our voices should never be silenced by those in power – because if it happens to one of us, it happens to all of us.

This is the moment to defend free speech across our nation. We encourage all Americans to join us, along with the ACLU, in the fight to defend and preserve our constitutionally protected rights. A graphic listing the names of the more than 400 signers of the ACLU's letter condemning the federal government's retaliation against Jimmy Kimmel. For the full list of signatories, visit aclu.org/kimmel-letter-bk
Reposted by Erin Lee
dawniefish.bsky.social
👉 REPOST CALL TO ACTION!: BOYCOTT T-Mobile! 1. They are hosting Trump's new "Trump Mobile" on their network. 2. They partnered with Elon Musk's Starlink. 3. They lobbied for "Trump's Big Beautiful Bill" 4. They ended DEI for Trump's approval on 2 major acquistions. MORE HERE: tmobileboycott.org
erinmarilee.bsky.social
We called Disney+ last night and cancelled our Disney/Hulu/ESPN bundle. I’m a disabled stay-at-home-mom of twin 3-year olds. To say we watched a lot of Mickey Mouse Funhouse, Clubhouse, and Bluey would be an understatement. If even we are cancelling, you know they’re feeling it. #BoycottDisney
Reposted by Erin Lee
kevinmkruse.bsky.social
RFK Jr, who is causing unprecedented damage, is deeply unpopular with the public.

Democrats absolutely need to demand his firing as a basic minimum for supporting any effort to fund the government.
erinmarilee.bsky.social
I’m in a ton of pain right now because we just up and drove 4 hours to South Carolina to get our kids vaccinated against covid because Kennedy made it impossible to protect our family in Georgia. And now this??? How much more is he going to hurt our family this week?
erinmarilee.bsky.social
I am so sorry this happened to you, Whitney! That’s awful. Thank you for so clearly articulating the damage this kind of “help” does.