“They rename it ‘chronic fatigue syndrome’ to downplay its seriousness & they mock the hundreds of severely ill patients who are calling the CDC begging for help…” #WorldMEDay #MEcfs #InternationalMEAwarenessDay

In 2020, President Trump wrote an executive order that he didn't sign. It would have directed the Defense Secretary to seize ballots and voting machines. He has said he regretted not signing that order. I asked Secretary Hegseth about that today and he refused to answer. youtube.com/shorts/6sZTR...

Exercise is always a good thing, right? Well, maybe not. For people with long covid or ME/CFS, it can be devastating. And science needs to catch up (all views my own blah blah blah) www.newscientist.com/article/2523...

stable genius right here…👇

Your inbox shouldn’t know you that well.

Tell your Senators to sign the Dear Colleague letter in support of ME/CFS research funding. Contact them by April 15th with our easy-to-use action tool here: https://solvecfs.quorum.us/campaign/157943/

CNBC: "OpenAI’s Fidji Simo takes medical leave, announces leadership changes" 'OpenAI hired Simo in May, and her condition, Postural Orthostatic Tachycardia Syndrome, or POTS, relapsed a few weeks before she started in the role' www.cnbc.com/2026/04/03/o...

“We talked about all M.E. had taken from us. From her, it had stolen her career, her imagined children, snowboarding, often even the strength to get out of bed. But the worst theft was her brilliant technologist’s mind. She told me she constantly felt concussed…” 💔

📢 Medical providers: your signature is needed. We're asking CMOs to share accurate ME/CFS resources & support its inclusion in licensure/exam pathways. go.solvecfs.org/e/1109402/Cl... #MECFS

If you or someone you know is suffering with #MECFS, you can take action by signing a letter asking State Medical Boards and State Health Leadership to recognize ME/CFS competency as a patient safety and standard-of-care issue. Please take action now! go.solvecfs.org/e/1109402/St... #MECFS

@peters.senate.gov Please support our 3 asks for FY27 Appropriations: • $15.4M for the CDC ME/CFS Program • $50M for the NIH ME/CFS Research Roadmap • ME/CFS in the PRMRP #MEAwareness #MECFS

@slotkin.senate.gov Please support our 3 asks for FY27 Appropriations: • $15.4M for the CDC ME/CFS Program • $50M for the NIH ME/CFS Research Roadmap • ME/CFS in the PRMRP #MEAwareness #MECFS

Today for #MECFSAdvocacyWeek: make your voice heard at the federal level. Contact your reps: solvecfs.quorum.us/campaign/157943 Share our posts: tinyurl.com/MECFSFederalAdvocacyDay#MECFSAdvocacyWeek #MECFS #pwME #MEAwarenessHour

ME/CFS affects ~9 million Americans. There are no FDA-approved treatments. We need medical research funding to change that. Today advocates are asking Congress to change that - join us! It takes 5 minutes: https://ow.ly/2hKo50YySls #MECFS #MEAwarenessHour Solve M.E. #MEAction Network

@beyer.house.gov As a constituent with ME/CFS, I’m asking you to support 3 asks for FY27 Appropriations: • $15.4M for the CDC ME/CFS Program • $50M for the NIH ME/CFS Research Roadmap • ME/CFS in the PRMRP Please support all 3—my whole family in VA-08 is counting on you! #MEAwareness #MECFS

@markwarner.bsky.social As a constituent with ME/CFS, I’m asking you to support 3 asks for FY27 Appropriations: • $15.4M for the CDC ME/CFS Program • $50M for the NIH ME/CFS Research Roadmap • ME/CFS in the PRMRP Please support all 3—my whole family in VA is counting on you! #MEAwareness #MECFS

@kaine.senate.gov As a constituent with ME/CFS, I’m asking you to support 3 asks for FY27 Appropriations: • $15.4M for the CDC ME/CFS Program • $50M for the NIH ME/CFS Research Roadmap • ME/CFS in the PRMRP Please support all 3—my whole family in VA is counting on you! #MEAwareness #MECFS

9 million Americans have ME/CFS. There are still no FDA-approved treatments. This year, Congress can change that. Here's what we're asking for in FY27 appropriations: 🧵

Tulane University: “Tulane study reveals key differences in long-term impacts of COVID-19 and flu” “The findings, published in Frontiers in Immunology, help explain why long COVID often includes neurological symptoms such as brain fog, fatigue…” news.tulane.edu/pr/tulane-st...

‘Nearly Every’ Child With Measles Suffers This Hidden Threat

Bloomberg: How Covid Quietly Rewires the Brain Researchers keep discovering more about the long-term neurological effects of SARS-CoV-2. By Jason Gale www.bloomberg.com/news/feature...

we need to talk about that Ring Super Bowl ad

"With an autocrat, you cannot give an inch"

ME/CFS is debilitating enuf to tend to disappear those affected from public life, so many people have no idea what it looks like. If you’re curious, this Sundance-premiered, Oscar-shortlisted doc streams free on YouTube and does a remarkable job making visible an illness usually obscured from view.

✅ ✅ Submitted support for Maryland's TEDCO Long COVID Innovation Grant and Loan Program (HB0027) this AM!

May still be time to sneak in a testimony for anyone wanting to support the effort to get dedicated research funds for Long Covid in Maryland. #LongCovid #MECFS

CISA was DOGEd last year. AI will be taking corporate jobs that have security privileges. Seems like a perfect storm for cyber security nighmare.

If you are worried how data will be used against ICE protesters. Or how smart homes reveal your secrets. Or smart cars or medical devices will become evidence in court. Listen to this conversation. There are risks, rewards, and even solutions…

Ok y'all. Whats going on is making me cry on the regular. It feels weird to be here at the GRAMMYs - but I want to honor the music of my ancestors by playing it- we gonna do some busking tomorrow, come say hello if you’re in town for the shindig.

NYT: 'Religious Leaders in Minnesota Say It’s Their Duty to Resist ICE' 'Progressive clergy members are in the spotlight — protesting, organizing and getting arrested. It’s a split screen to the Trump administration’s muscular, conservative Christianity' www.nytimes.com/2026/02/01/b...

'In the Twin Cities, ICE resistance goes mainstream' “Doing nothing isn’t okay.” “This movement that we’re building is about love and it’s about the powerful futures that we want to build each other." minnesotareformer.com/2026/01/21/i...

NPR: 'A red hat, inspired by a symbol of resistance to Nazi occupation, gains traction in Minnesota' 'Since making the pattern available for $5, the shop has raised nearly $400,000, Mashaal said Friday.' www.npr.org/2026/01/31/n...

"MPR News has learned that the police chief in the small southern Minnesota city of St. Peter intervened Thursday afternoon to prevent federal immigration agents from arresting a local resident" who had been observing federal agents. www.mprnews.org/story/2026/0...

A very good 17 minute documentary on POTS. If you are someone you love suffers from POTS this might be a helpful video to share with them and would be good to share with Healthcare providers.

Is this one of the many facets of PEM that is found in people with #longcovid and #mecfs?

I have long Covid. Don’t call my chronic disease a ‘journey’ www.statnews.com/2025/11/25/c... via @statnews.com

Some healthcare providers are still referring to #mecfs and #longcovid as psychological or "functional" despite considerable research to the contrary. Here, I review the latest findings and expert thinking, with potential for treatment: www.medscape.com/viewarticle/...

"Graded exercise" is neither supported by evidence nor recommended for people with an illness defined by worsening with exercise. #mecfs #longcovid www.medscape.com/viewarticle/...

🎥 Recordings Available: Community Symposium on the Molecular Basis of ME/CFS 👉 Access them here: ow.ly/Aw2G50XcIIO #MECFS #pwME

Just published: Low-dose rapamycin alleviates clinical symptoms of fatigue and PEM in ME/CFS patients via improvement of autophagy: a pilot study. J Transl Med 23, 1148 (2025). doi.org/10.1186/s129...

Sunday morning read: www.npr.org/2025/10/18/n...

Someone knowing their limits and stopping before a crash starts is an important part of pacing yourself. Very concerning conclusions.

Just a reminder that this is coming up quickly, on 10/31. You can register to watch remotely or in person. Im very curious to see what they come up with.

This is a beautifully worded description of how people with ME have to navigate the world. I have yet to meet a person with ME who "prefers" living like this. In fact, we abhor it.

#NEISvoid inside baseball— The NIH team’s response to this (the Davenport et al comment) is awful. It’s here: www.nature.com/articles/s41... 1/

Important thread for #pwME & #LongCovid (this affects y’all too). We need to dismantle/replace this dangerous & outdated paradigm once & for all, & we need NIH research funding to do that, but the people assigned to “help” us at NIH keep showing themselves to be enemies, not friends