Every year on December 16, I think of my friend Cindy Siegel Shepler. She was a person with #mecfs and a chronic illness warrior. I miss her. Rest in power, Cindy. www.cnn.com/2020/06/07/h...

Atlanta friends! Don’t miss this free concert experience on Dec. 13 for those living with chronic illness, including long COVID, and their family members, caregivers and health care providers. Masks will be available and encouraged. For those who can’t attend in person, there will be a livestream.

Atlanta Friends: Reserve a spot now for Joshua Roman's Immunity tour coming December 13! #longcovid #mecfs www.eventbrite.com/e/joshua-rom...

CDC's @drdebhoury.bsky.social calls on Congress to act. "It is a purposeful reshaping of CDC away from evidence-based practice & toward ideology-driven governance...I did not resign to make a symbolic point. I resigned because staying silent would have made me complicit." time.com/7338714/dr-d...

We have a safe vaccine that's proven its worth over three decades. We have a strategy that works. Now obstetricians, pediatricians, insurers, state health departments & others should stand up for fact-based care, protect our children and not mess with success. We must keep protecting our children.

Take action TODAY! Are you a medical provider in need of a concise but helpful CME? Are you a patient wishing your clinicians knew more about ME, aka ME/CFS? We have a CME for you but it is only available until Oct 1. Sample language & link: docs.google.com/document/d/1... #MedEd #CME #MECFS

I was like 5 hours into an emotional breakdown when i had my first bite of the strawberry pie from @rachelriggs.bsky.social cookbook In Good Health, and my goodness! I have never been so fully transported by a bite of food. What a bright, sunny dessert! The whole family is raving.

“No one in the world holds a grudge like me.” OMG this woman might be my platonic soulmate.

Join us in wishing our Scientific Director @exceedhergrasp1.bsky.social our best as she participates in this week's Stanford ME/CFS conference! Sending our best to all participating! Community Symposium is Sept. 5th at 8 am PT. Register: stanford.zoom.us/webinar/regi... @openmedf.bsky.social #pwME

It is true HHS cuts to CDC HR are causing real-life problems. 👀Let's be clear, #DOGE DID THIS! 👀 We want other fed worker stories added to highlight the struggles of probationary employees & short term employees. They are struggling without jobs, insurance, IT threatening police reports, & more.

NEW: More than 750 current and former staff of HHS, including @CDCgov, and NIH, have signed a letter to RFKJr and members of Congress accusing him of endangering the lives of employees and the American people following the Aug 8 attack on the CDC. www.savehhs.org/letter/hhs-s...

I stand with the CDC. The Atlantic magazine quoted a veteran CDC employee saying, “I’m actually surprised it didn’t happen sooner.” www.ajc.com/opinion/2025...

Big news from me! After years of being too sick to do any significant writing, I'm now well enough to launch a Substack, The Weighing. I'll be writing about the clean energy transition in New Mexico, liberal education, and severe myalgic encephalomyelitis. Join me! open.substack.com/pub/jrehmeye...

No, it's not only the US who will suffer from RFK Jr cancelling vaccine research. 1️⃣ You can't just instantly teleport research projects. Cancelling US projects slows global progress. 2️⃣ Preventing pandemics will always be a group project. The US is letting the team down & putting the world at risk.

I remember when this happened.

Learned earlier this evening that the #MECFS Collaborative Research Center at Columbia's funding was restored... it's a huge relief to know that their work will move forward. Congrats to the whole lab! 🧪 #NEISvoid

Good news for pwME used to bad news!

NEW: Sec. Noem has now admits "last mile" disaster communications weren't up to par in the Texas catastrophe. But while bodies were still being recovered on Tuesday DHS canceled a $3 million grant focused on improving precisely those kinds of "last mile" comms. talkingpointsmemo.com/edblog/dhs-c...

The MECFS Minnesota Clinic is hosting a panel right now by clinicians sharing Long Covid and MECFS news and care resources! The clinic treats patients in-person and virtually from 10 different states currently #LongCovid #MECFS #pwME Join here: teams.microsoft.com/l/meetup-joi...

My friend, @maggieboxey.bsky.social has nearly 50k views on her Millions Missing Ted Talk!!! Let's keep the momentum going! THIS is advocacy in action. Please like, comment and share. Go, Maggie ❣️ #mecfs #longcovid #millionsmissing

Check out this amazing TedX talk from #MEAction Georgia member, Maggie Boxey! Watch, comment, and like on YouTube! #pwME #MECFS #MyalgicEncephalomyelitis #disability #LongCovid #MillionsMissing

Insane message discipline from this guy.

My ME Action GA friends, working hard during @solveme.bsky.social’s Advocacy Week to brings critical issues concerning ME/CFS to members of Congress. Love and respect! #MEForward

Just completed a meeting with Lizzie N of Rep. Rich McCormick's office as part of @solveme.bsky.social Advocacy Week. We are counting on Congress to help support the estimated 9 million Americans suffering with #MECFS. #MEforward

I think #COVID hasn’t been normalized because on some level people know they’ve been bullshitted about it, know it’s more dangerous than is let on, and are secretly terrified. That’s why people go “deer in headlights” when you break the taboo and actually say the word.

Congratulations to Tahlia Ruschioni and @batemanhornecenter.bsky.social on their big announcement! Tahlia is an incredible leader and we're thrilled that she is taking the helm as Executive Director.

🧵 1/ 🚨 Congress slashed $859 MILLION from a key research program that includes funding for ME/CFS and other critical health conditions. We need your help to restore it. #MECFS #CDMRP #HR3906 solvecfs.quorum.us/campaign/128...

This week is @solveme.bsky.social’s Advocacy Week when our advocates, including ME Action GA’s wonderful advocates, speak with Senators, Representatives and their staffs about the needs of the ME/CFS community. I am no longer healthy enough to participate, but I am so thankful for those who can.

We are sending out our best to those participating in @solveme.bsky.social's Advocacy week! We have included their action to ask your rep to restore critical medical research funding by becoming a cosponsor of H.R. 3906. Solve also included NIH Roadmap funding as an ask. We link to our letter.

I feast on news of billionaires losing. May the orcas take down another yacht for my dessert.

I will be joining with my fellow #MECFS advocates to talk to my congressional representative about restoring these critical funds. #GA07 #MEforward

The latest substack from @maggieboxey.bsky.social is excellent as always! My favorite line, "When public health becomes optional, people with chronic illnesses become disposable." YES! open.substack.com/pub/maggiebo...

BREAKING: A federal judge in Massachusetts (the Reagan-appointed William Young) has declared the Trump administration's cuts to NIH grants — ostensibly over Trump's EOs on gender ideology and DEI — are "illegal" and "void." He's ordering many grants restored.

Last day to take action is TODAY! There is no need to get rid of Section 504! People with disabilities deserve better -- all Americans deserve better! #Section504 #disabilitySOS

"When public health becomes optional, people with chronic illnesses become disposable." @maggieboxey.bsky.social substack.com/@maggieboxey...

TEDxOjai: I Am One of the Millions Missing @maggieboxey.bsky.social www.youtube.com/watch?v=JzKf... Image taken from Mass ME/CFS & FM Assoc May newsletter massme.monkeypod.io/mailcoach/we... #MEcfs #CFS

"In a context such as the United States, three key factors stand out: easy access to deadly weapons, intense polarization that paints political opponents as treasonous enemies rather than disagreeing compatriots, and incitements to political violence from high-profile public figures."

In Georgia, attorney general Chris Carr has publicly attacked 504 provisions. I'm appalled that these attacks seem coordinated. decaturish.com/2025/02/geor...

The Department of Energy is trying to get rid of accessibility requirements for new construction via rulemaking. This unprecedented move, which seems to be illegal, could be the blueprint for other federal agencies to follow. New from me at @motherjones.com. www.motherjones.com/politics/202...

“Advocacy works,” said #MEAction Minnesota State Chapter Chair, Terri L. Wilder, in an interview with Sick Times. “I’m really proud of all the people who showed up. I’m really proud of the people who wrote letters, who called their representatives.” @thesicktimes.bsky.social

Thank you, @thetattooedjew.com for talking about disability justice! I especially appreciate you mentioning those with invisible disabilities. #mecfs 'Closer Look with Rose Scott' on the WABE app! Now at www.wabe.org. bit.ly/44aAa28 Brought to you by your WABE

This is astonishing: a brilliant explanation of what #MECFS is like, and using ME coping and organizing skills as a model for climate change, connecting it all to the history of disability justice movements. A wonderful start to my day! Go Violet go! yaleglobalhealthreview.com/2025/05/18/a...

I don’t know. It’s just a tiny drop in an ocean of suffering. The moms in Gaza. The moms in Ukraine. Their precious children. In history we tell stories about the young, brave fighters who turn the tide. But I just want to know how moms potty train and fight back while their world collapses.

Not sure if this will resonate with anyone, but I hope future people who write about this time might include the detail that some of us were disabled moms trying to potty train their kids during all this. Like I’m cleaning poop off the floor and RFK is destroying public health. 🧵

Today ME Action GA celebrated #BlueSunday2025 with a virtual and live gathering featuring the TEDx talk by our own @maggieboxey.bsky.social entitled “I Am One of the Millions Missing”. If you haven’t seen it yet, you can watch it at the link below. It’s excellent!

Salt Lake Tribune: 'For Latter-day Saints afraid of getting sick at church, new guidelines are a breath of fresh air' 'Erin has a condition known as myalgic encephalomyelitis/chronic fatigue syndrome, or ME-CFS' www.sltrib.com/religion/202...

It’s been confusing watching health care facilities and churches drop protections for the sick. Shouldn’t these be the safest places? I’m grateful to the LDS church who worked with advocates to create new indoor air quality guidelines, and to the Trib for showing how this affects #pwME and #POTS.

COVID is surging in Taiwan, meaning it's going to surge here shortly. Wear a mask indoors guys, and get vaccinated if/while you still can.