erinmarilee.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

The White House is terminating funding for NIH RECOVER grants studying Long COVID that had been awarded in 2022 and 2023 - effectively stopping 45 studies that were already underway and almost complete. #NoLongCOVIDCuts #LongCOVID #MECFS #pwME #MECFS #MyalgicE

submitted 3 hours ago • 2 comments

Now would be a great time to do that episode on Long Covid & the historic & ongoing mistreatment of people with ME & other infection associated chronic conditions @weeklyshowpodcast.bsky.social @thedailyshow.com #GreatestMEdicalScandal

submitted 2 days ago • 0 comments

23andMe is going under. Californians have the right to delete their genetic data before it's turned over to next party buying the assets. If you have a 23andMe account, go log in to download whatever reports you want to save, then follow these instructions to delete your data.

submitted 4 days ago • 171 comments

"Elon Musk is no longer just the world's richest billionaire— he's the main driver behind the global collapse of HIV/AIDS care. He's responsible for the sadistic, homophobic dismantling of PEPFAR, & every Model S on the road is now a billboard for AIDS and death." ACT UP. Fight back. Fight AIDS.

submitted 4 days ago • 1 comment

This is a helpful reminder. I regularly journaled in 2020, I tracked covid deaths across the year. I wrote about world events and how it affected me. This year I can’t bear to tell my journal what’s happening. But records are important. I’ll keep trying.

submitted 6 days ago • 0 comments

“The best revenge is to refuse their values. To embody the kind of living—free, colorful, open—they want to snuff out. So when they dehumanize, you humanize. When they try to fracture and divide people, you connect… When they try to make you cynical, you double down on hope.” Anand Giridharadas

submitted 6 days ago • 0 comments

@warnock.senate.gov @ossoff.senate.gov so many of us are too sick to call or write to you about this. Most Georgians with the disease aren’t even diagnosed correctly. Please don’t let Trump stop the search for treatment. We just want our lives back.

submitted 7 days ago • 0 comments

We fought for these Centers. Weekly, we saw RFAs granted for other diseases - not ME/CFS. We asked our Representatives to sign letters to NIH supporting us. We finally saw money trickle in from NIH Institutes- not enough, but a start. We are losing the small gains of the 2010s. We must take a stand!

submitted 7 days ago • 1 comment

Oh noes I’m going to cry 😭 I could not love this more.

submitted 8 days ago • 0 comments

Being home alone with littles is too hard when news like this hits. I need to be in a room with a dozen adults who love me and will fight for me. I want to be able to break down and weep. But instead I’m the one in charge of emotional regulation. I want to scream. I’ll go play princess instead.

submitted 8 days ago • 6 comments

Jasmin Paris sprawled on the sofa following #BM100 on socials and eating Doritos "completed it mate"

submitted 8 days ago • 3 comments

Do yourself a favor meeps and read this empowering story. You are not alone. We are not alone. And we have enough strength to make a difference.

submitted 8 days ago • 1 comment

10 runners finished Loop 1. 9 runners began Loop 2. I slept for 9 hours. They did not. #BM100

submitted 8 days ago • 0 comments

I am also super excited for the annual appearance of one of my favourite words: INTERLOOPAL #BM100

submitted 8 days ago • 2 comments

Well wishes to our European friends as they make the difficult choice between going to bed at a reasonable hour or staying up just a little bit longer to see if runners have been spotted at the Fire Tower. #BM100

submitted 9 days ago • 6 comments

After a brief memorial, laz lit the cigarette at 11:37. The 2025 Barkley Marathons has begun. #BM100

submitted 9 days ago • 22 comments

After multiple failed attempts, the conch was blown at 10:37. The 2025 Barkley Marathons begins in one hour. #BM100.

submitted 9 days ago • 55 comments

This is the time of year where I find myself saying stuff to my partner like 'sorry I'm late, 'guy with very daring shorts' was due at Rat Jaw and I've been obsessively refreshing all my social apps for the last 2hrs' #BM100

submitted 10 days ago • 5 comments

Two steps forward, one step back. For #LongCOVID awareness day today I had the honor of joining thousands of other New Yorkers in a peaceful protest to stand against many of the current administration’s recent damaging and thoughtless policies and executive orders. Let there 1/

submitted 12 days ago • 7 comments

Trying to pace everyday, trying to contact my reps everyday, trying to do sensory play with the littles every day because if I don’t I’m cleaning up messes every day. But if I do, I’ll overexert every day, and if I overexert I’ll be too sick to call my reps every day. Rinse. Repeat. #MECFS

submitted 12 days ago • 0 comments

I take my duties as the unofficial Barkley Marathons commentator for #MEActionGA extremely seriously. Have no fear friends, I am watching closely for hints of the race start and will keep you updated. A year later, I still can’t think about Small European Woman without shedding happy tears. ❤️

submitted 14 days ago • 0 comments

Fun thing about being a mom with #MECFS is sometimes you overheat and think it’s your temperature dysregulation acting up. And then you spot a toddler chair next to the thermostat and realize the littles set the temp to 90. (Blazing hot for you Celsius users). Fixable problem! Not a body problem!

submitted 14 days ago • 1 comment

I’ve been sidelined by migraine for 3 days and the second I started feeling better today I was like, “ooh productivity time?” Then nature sent a gorgeous barred owl to our yard and I just sat still and watched that thing for an hour. And then I decided to rest tonight. Thanks nature!

submitted 14 days ago • 0 comments

This is my Rep. He rarely replies to calls, won’t accept 3rd party emails & has no town halls scheduled.

submitted 15 days ago • 0 comments

#MOMsky Please share! Georgia moms (and people with moms!!) please see the below action. Everyone else check to see if your state is on the list of states on the lawsuit and send this letter to your AG. Not on the list? Ask your AG to file an amicus brief. REPOST or QUOTE to amplify <3

submitted 19 days ago • 0 comments

Ron Davis spoke at this demonstration to support science in Palo Alto today.

submitted 19 days ago • 2 comments

I’m #StillSickStillFighting and I #StandUpForScience2025 in Atlanta, Georgia. Millions of people are missing from their lives because of infection-associated chronic conditions like #MECFS. We need thriving scientific institutions if we’re ever going to find effective treatments.

submitted 20 days ago • 2 comments

Liberty Plaza in Atlanta!

submitted 20 days ago • 0 comments

SO MANY STAND UP FOR SCIENCE EVENTS TO CHOOSE FROM—153 and COUNTING! To get more information on our local events and to register your own, head to www.standupforscience2025.org/local-event-information/ ☀️⬇️🌎

submitted 21 days ago • 27 comments

So much going on is demanding (rightfully) that people disrupt things. Protest. Put sand in the gears. Be a mischief maker. Yell. Make a scene. If you must comply, make it malicious. Critical stuff! But this is a thread for those who, like me, don't have a rule breaking bone in their bodies.

submitted 23 days ago • 3 comments

So, besides contacting my representatives every day and performatively changing my pronunciation of “sorry” to the Canadian “sore-y”, what else can we Americans do to help our Canadian and Mexican neighbors who will be hurt by these tariffs? I truly am so sorry.

submitted 23 days ago • 0 comments

Russia and China, have ramped up recruitment efforts targeting US federal employees—particularly those recently fired or at risk of termination. These efforts are unfolding aggressively on LinkedIn, where adversaries are reaching out under the guise of job opportunities, networking, and consulting.

submitted 26 days ago • 375 comments

The Ukrainian government has a list of places where you can donate to the war effort here. I personally just donated $100: war.ukraine.ua/donate/ Slava Ukraini.

submitted 27 days ago • 93 comments

I was too sick to prep for the economic blackout, but we have a decent pantry so I figured I’d be able to make it work. Friends, I did not realize how low we were on basics. I combined every last drop of olive oil, vegetable oil and avocado oil, and every grain of 2 types of rice to make dinner.

submitted 27 days ago • 0 comments