Liz Burlingame

Wait. It's no longer on October 9th?

Laptop showing the Mayo Clinic Proceedings paper and CME "Diagnosis and Management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome" Text above the laptop: ME/CFS CME Available! Until October 1st! Send it to your clinician now. Jaime Seltzer was one of the co-authors. bit.ly/MayoCME8

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.

HHS Staff Response to the August 8th Attack — Save HHS Public servants and allies are standing together to demand work environments free from violence, accountability for leaders and policymakers who put everyday Americans in danger, and public health lea...

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...

The anti-vax chickens come home to roost in shooting at CDC Somehow, in this new twisted world we now inhabit, Anti-Vaxxer In Chief Robert F. Kennedy Jr. is the person charged with overseeing the nation’s health, including the CDC.

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...

YAY! I'm so glad you are well enough to write again. Welcome back! Subscribed ✅

What the World Asks, What We Give: Energy, Learning, and Suffering Or: I Bolted My Head Back On. Now I’m Writing Again.

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 understand you are not claiming credit but it's good news you're sharing at a time when any positive news is worth celebrating. Also you keep ME/CFS relevant. You don't allow people to forget us. And that's a big job. I'm grateful to you for all the work you do.

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

Just WOW! Thanks for all the advocacy. Thanks for making sure people with #mecfs are not forgotten.

Good news for pwME used to bad news!

DHS Cancels Extreme Weather Comms Grant While Bodies Still Being Recovered in Texas As more than a hundred fatalities have been confirmed in Texas flash...

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...

Join conversation

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

Congress has the opportunity to transform the landscape for #MECFS & related diseases w/ bipartisan action. These 4 steps—restoring CDMRP, protecting CDC’s CFS Program, funding the NIH roadmap, & authorizing a new NASEM report — represent an investment in public health, science, and human dignity.

Screenshot of four women attending a virtual advocacy meeting to discuss the crisis in clinical care for people with ME/CFS.

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.

A square graphic with blue and green abstract shapes in the corners and an alarm emoji at the top of the page reads "Medical Research Funding Slashed 57%. Congress cut $859 million from CDMRP in FY25--putting ME/CFS research at serious risk. H.R. 3906 would restore funding. Tell Congress: COSPONSOR NOW." At the bottom of the graphic are a multicolored image of the U.S. Capitol Building and Solve's orange and green double helix logo.

🧵 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...

ADVOCACY WEEK INFORMATION JUNE 2025 Monday, June 23rd, 2025 Virtual Meet-Ups - Virtual Medium Energy Tuesday, June 24th, 2025 Senate Education Day - Virtual High Energy Wednesday, June 25th, 2025 Social Media Action Day - Virtual Low Energy Thursday, June 26th, 2025 House Education Day - Virtual High Energy Friday, June 27th, 2025 EmPOWER ME Day - Virtual Low/Medium Energy ENERGY GUIDE KEY: Low: Short event, optional, or requires minimal to no participation. MEDIUM: Might require participation, note taking, or cognitive effort. HIGH: Requires participation, note taking, and cognitive effort

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.

It’s @solveme.bsky.social advocacy week 2025 and my birthday week… go here to support: open.substack.com/pub/maggiebo...

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.