Tessera

Erin Lee

@erinmarilee.bsky.social

ME/CFS since 2001 | Passionate about improving med ed, increasing access to care, and finding a cure | Faith, Hope, Love

245 Posts278 Follower 363 Folgt

Erin Lee @erinmarilee.bsky.social · 18h ago

We have finished the #BigSitToCureME! A huge thanks from our family to you! Donations can be submitted through Oct 24. The donation link and our full bird list spread across three posts are below.

A family sits together on their covered porch. The father sits in a blue deck chair with a smalll child on his lap. The mother sits below him on the top step with an equally small child next to her. The children’s faces are covered by heart eyes emojis. Everyone is beaming because they just spent the day birding in their backyard.

Erin Lee@erinmarilee.bsky.social · 19h ago

You can donate here: openmedicinefoundation.crowdchange.co/61233?utm_so... Our 28 species included: 5 #BigSitToCureME migrants in our back yard: Chestnut-sided warbler - lifer! Hooded warbler Magnolia warbler American redstart Swainsons thrush 1 summer resident in our backyard: White eyed video…

Erin Lee @erinmarilee.bsky.social · 2d ago

Here’s a thread of tips for birding with #MECFS. Some of these are accessible for people with Severe ME, but I don’t have any tips for people with Very Severe ME. If you do, please add them to the list. #BigSitToCureME

Erin Lee @erinmarilee.bsky.social · 2d ago

It’s officially #BigSitToCureME time! I am in my circle, a cup of brewed cacao in hand, waiting for sunrise in half an hour. Confession: I’ve been birding almost 2 years but I’ve never birded at sunrise because my #MECFS symptoms are at their worst in the morning. Excited for my first dawn chorus!

Erin Lee @erinmarilee.bsky.social · 2d ago

Tomorrow (Sunday) is The Big Sit! Our family will spend the day in a 17ft circle trying to find as many birds as possible to raise funds for #MECFS research. We’re inviting people to donate $1 per bird we (or you) find to @openmedf.bsky.social openmedicinefoundation.crowdchange.co/61233?utm_so...

BigSitToCureME

openmedicinefoundation.crowdchange.co

Erin Lee @erinmarilee.bsky.social · 2w ago

On Sunday October 11, Nate and I will compete in The Big Sit to raise funds for #MECFS research and we’d love your help! The Big Sit is a birding event where you try to find as many species as possible while sitting in a 17 foot circle. There are 2 ways you can help:

A white male and female couple in their 40s smile in front of a fallen southern live oak tree bleached by the sun. They are holding binoculars and smiling because they just spotted an endangered piping plover in the wild!

Charlie Warzel @cwarzel.bsky.social · 2w ago

There is a moment at the very very end of Abdul El-Sayed's podcast with Ezra Klein (book recommendation section) where he talks about the idea of "speaking truth to pain" and this will be staying with me for an extremely long time. www.nytimes.com/2026/09/25/o...

But there’s also something about truth to pain. We talk a lot about truth to power, but I think it’s actually a lot harder to speak truth to pain. I say that as someone who went to medical school, realizing that in a lot of our politics right now, we’ve got to get a lot better at speaking truth to pain if we’re going to get through some of these challenges that we have.

What does “truth to pain” mean?

It’s one thing to look power in the eye and say: You’re wrong about this. But there’s a way in which pain is very difficult to reason with. Because when somebody is in their pain, they’re in their trauma. They see that pain, and they may not see what’s causing it.

I remember just very explicitly being in a trauma ward with a gunshot wound patient and watching this big guy with his hand on his gunshot wound. All the folks are trying to pull his hand off his pain, that point of his gunshot wound, this clear vulnerability.

And this emergency room doctor had the presence of mind to be like: Everyone, stop. And she looks him in the eyes, and she’s like: I get that really hurts, and I’m so sorry that you’re here. You don’t want to be here. We don’t want you to be here. But if you don’t let us fix this, you could die. So I’m going to take your hand, and I’m going to move it off, OK? Because I need to get there so that you can live.

She was speaking truth to pain. He understands he’s at the hospital, he needs care, but he also doesn’t want anybody to touch the wound. Which is a natural thing. And I think it is a really great metaphor for how we think about a lot of these challenges we talked about today.

George Monbiot @georgemonbiot.bsky.social · 3w ago

Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

theguardian.com

Erin Lee @erinmarilee.bsky.social · 3w ago

I’m teaching my local church ladies about #MECFS on Thursday and am looking for a high level summary of what we know today about the mechanisms of the disease. @bhanlon15.bsky.social @exceedhergrasp1.bsky.social any 1-pagers out there you recommend?

Wilhelmina Jenkins @wilhelminaj.bsky.social · last mo.

Friends, a major problem in the demographics of ME/CFS studies is the absence of Black participants. If you know of any Black adults with ME/CFS, please suggest that they complete this survey. I have completed it and it is relatively untaxing. Thanks!

victoria@vashetc.blacksky.app · last mo.

Hi friends. I've tried my best to reach out to HBCU's and other Black spaces but still have a very low amount of survey's from Black people. I even e-mailed professors directly and DM'd people online. Please share with any Black people with ME/CFS that you might know of!

Erin Lee @erinmarilee.bsky.social · last mo.

Every year we decide to do a lord of the rings themed family Halloween costume, and every year the October Slide derails all are plans. So this year I started making costumes in August. And I am pleased to share that as of today the kiddos’ hobbit costumes are ready! Next up: Gandalf!

Erin Lee @erinmarilee.bsky.social · 2mo ago

Minutes after I discovered The Great British Sewing Bee had disappeared from Roku, a political candidate texted me asking for $5. $5??? In this economy??? Without my emotional support sewing show?? How dare you sir??? *now that my show is back, I have chosen to forgive the candidate.

Erin Lee @erinmarilee.bsky.social · 3mo ago

I submitted my comment! Solve did a great job breaking down the parts of the rule that are most troubling for #MECFS research. It only took me 15 minutes. Now it’s time for me to rest and recover. ❤️

Solve M.E.@solveme.bsky.social · 3mo ago

📢A proposed federal rule could let the government cancel active #MECFS research mid-study when political priorities change. The public comment window closes July 13. Take action: https://ow.ly/J5EP50ZcpV0 How to submit a public comment: https://ow.ly/Oq6150ZcpUZ Please share! #MEAwarenessHour

Urgent alert about a government rule threatening to halt ME/CFS research with a July 13, 2026 deadline to act.

Trung Le Nguyen @trungles.com · 5mo ago

So I’ve started Pride and Prejudice, and already I feel bad for Mrs Bennet.

Erin Lee @erinmarilee.bsky.social · 3mo ago

#NEISvoid I’ve crashed hard from smoke inhalation from the fireworks. I’m resting all day, but is there anything else I can do to help my body recover quickly?

Erin Lee @erinmarilee.bsky.social · 4mo ago

I guffawed. But also, good idea!

blaine@jblainefoster.bsky.social · 4mo ago

I suggest some graded lit review therapy where they slowly increase the number of studies they read that explore biological mechanisms of the disease

blaine @jblainefoster.bsky.social · 4mo ago

have the mind-body researchers considered doing some amygdala retraining about how they interpret every criticism of their work as "being silenced"?

Brian Phillips @brianphillips.lol · 5mo ago

Here's the serious bit for anyone who'd rather skip the 4000 words of jokes

Because the truth is, tech doesn't have an image problem. It doesn't have a message problem. It has an intention problem. What's wrong with the axe murderer who broke into my house is not that he hasn't successfully persuaded me to buy into his narrative. What's wrong is that he's trying to kill me with an axe. Similarly, when you launch a product that's designed to put millions of people out of work, block access to sources of verifiable truth, replace human creativity with slop, and lower the barriers to every sort of atrocity, the problem isn't that you haven't told the public a good story about those things. The problem is that you are trying to do them. (
There are things in the world that are more important than money. The fact that you seem not to believe this, that you seem to think any motive beyond ruthless acquisitiveness is fake, dishonest, or childish, is the heart of your problem. Your attitude is not by any means unique to tech, but the

🎃 Killy Witches 👻@tillybridges.bsky.social · 5mo ago

CIS PEOPLE TIME TO STEP UP it’s once again time to yell at our bad government via online comment form the FCC is trying to make trans and nonbinary content require special ratings on shows GLAAD has a good writeup on it below TELL ‘EM NO direct link to comment form: www.fcc.gov/ecfs/filings...

Tell the FCC that LGBTQ Stories Don’t Need a Warning Label | GLAAD

The Federal Communications Commission (FCC) is targeting LGBTQ stories. They are trying to control what you see on television. This government overreach is dangerous...

glaad.org

Sherrilyn Ifill @sifill.bsky.social · 5mo ago

Feeling overwhelmed with all of this. LISTEN. Another Louisiana resident (Marshawn is the only name we have) testifies against the state’s racial gerrymander, speaking truth to power up and down the hearing room and predicts how this story will end. Speak your truth, fight and believe.

Anil van der Zee @anilvanderzee.bsky.social · 5mo ago

‼️ BURIED ALIVE WITH M.E.‼️ For #MEAwarenessMonth I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?... I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissing

Buried Alive with M.E. (with subtitles)

YouTube video by Anil about ME

youtu.be

Sunny Moraine @dynamicsymmetry.bsky.social · 6mo ago

It’s so easy right now, feeling and really in practical terms *being* so powerless, to start feeling like everything is shit and nothing is worth anything anyway That’s pathetic cope and you should reject it

Sunny Moraine @dynamicsymmetry.bsky.social · 6mo ago

Second, once you’ve done that: Try to remember what we’re fighting for and working toward This wouldn’t all be so frightening and emotionally devastating if we didn’t care about each other, if we felt like we genuinely had nothing to protect. Think intentionally about what those things are

Sunny Moraine @dynamicsymmetry.bsky.social · 6mo ago

I’ve been seeing a lot of “what the fuck am I even supposed to DO today” and feeling that myself, and after some thought, here’s where I’ve come down First, call your house rep/senators. Yes, I know that feels pointless. Do it anyway. Helpful script below bsky.app/profile/cele...

Celeste Pewter@celestepewter.bsky.social · 6mo ago

Script.

YOU: Hi my name is [name]. I’m calling from [ZIP CODE].

YOU: Today, President Trump said that “a whole civilization will die tonight” if Iran does not meet his deadline to reopen the Strait of Hormuz. That rhetoric is extreme, dangerous, and disqualifying.
 FOR THOSE W/ DEM ELECTEDS: I’m asking [ELECTED OFFICIAL] to publicly condemn this rhetoric and use every available procedural tool to stop further escalation, including support for impeachment and urgent public pressure on congressional leadership.

FOR THOSE W/ GOP ELECTEDS: I’m asking [ELECTED OFFICIAL] to publicly condemn this rhetoric, press the administration and cabinet to treat this as disqualifying conduct.

YOU: Calling this what it is matters. Even if removal is difficult, elected officials should treat rhetoric like this as unfit and dangerous.

YOU: [OPTIONAL COMMENTS]

5 Calls @5calls.org · 6mo ago

🚨🚨🚨 Congress must return from recess and use every tool it can to stop Trump from committing war crimes and unilaterally launching a nuclear war. That includes impeachment. Call your reps. NOW. 🔥📞🔥 Info, numbers, and script @ 5calls.org

5 Calls

Spend 5 minutes. Make 5 calls. Make your voice heard.

5calls.org

Erin Lee @erinmarilee.bsky.social · 6mo ago

The whiplash of parenting in this era: Calls reps: Hi, the president threatened to destroy an entire civilization today. I’d like to know what you’re doing to stop him today. Thanks, I’m scared. Calls excitedly to the littles: OK kids! Who wants to help mommy cook eggs in the instant pot?!

Miles W. Griffis @mileswgriffis.bsky.social · 7mo ago

Can anyone point me to a resource on how sign "Long COVID" in American Sign Language? I've seen various ways from spelling it out, to using the sign for "Coronavirus" or "COVID-19" followed by "Long" or "Stay". I'm curious if there is any official guidance/recommendations. Many thanks 🙏

It's ME(Jaime)@exceedhergrasp1.bsky.social · 8mo ago

Hey, folks. If you're able to donate to a Kansas LGBTQ+ or trans rights org, please do so! Check out the thread below for more details. I donated $25 but I'm sure anything would be appreciated. paypal.com/donate/?host...

Donate to LGBTQ Foundation of Kansas

Help support LGBTQ Foundation of Kansas by donating or sharing with your friends.

paypal.com

Katelyn Burns@katelynburns.com · 8mo ago

Let's see if we can raise $10,000 today for red state or national queer orgs. Post proof here in the replies that you donated to a red state or national queer organization and I will share. Who's with me? (I can't donate myself because I'm a journalist who covers these orgs)

Keith @keithdunn.bsky.social · 8mo ago

Being a scientist, he ran on the metric system - 1km/hr.

Keith @keithdunn.bsky.social · 8mo ago

28 hours into the #BM100 1 runner is on loop 1 and loop 2; 4 runners are on loop 3.