M. and S. Shaw

Have you ever wondered what the difference is between post-exertional malaise (PEM) & post-exertional symptom exacerbation (PESE) in myalgic encephalomyelitis (M.E.)? @sunsopeningband explains it in a clear and elegant nutshell.

@Neuroscope_mp @threadreaderapp unroll

We may be watching the moment autoimmune medicine changed forever. Two peer-reviewed trials. NEJM. Nature Medicine. 39 patients. Near-complete remission. Off all medication. The science is real. The trials are expanding. The immune system can be reset. Follow for more science like this 🔔 Join me on substack for deeper dives neuroscope.substack.com/p/your-brain-s… And share this with anyone living with an autoimmune disease.

🚨 BREAKING: German researchers treated 15 severe lupus patients with CAR-T therapy. All 15 went into complete remission. Many stopped ALL medication. Now a larger trial just confirmed it — across 3 autoimmune diseases. This might be the biggest shift in autoimmune medicine in decades. 🧵

Hey! My colleagues at NPR made a voter registration guide. Enter your state and learn the deadlines to register in time to make your voice heard in this year’s primaries. apps.npr.org/voter-registra…

1/ I want to explain a bit about our MIT MAESTRO study. 🧵How can we help you get better if we don't know what's making you sick? If we don't currently have a way to identify what's going wrong, and we don't have the right tests, I think we need to MEASURE ABSOLUTELY EVERYTHING.

I have a friend in Cuba and what they just reported should end careers in Washington. Every single patient on a ventilator in their hospital died tonight. The power went out. The ventilators stopped. This isn't a rare incident anymore. Cuba's grid has collapsed 3 times THIS MONTH. The hospital staff told them they've had more emergency deaths in the last 30 days than in all of last year combined. A patient with leukemia at a Havana hospital told reporters: "Without fuel or affordable transportation, life has only gotten harder. We are fighting every day." NICU babies are on bare minimum power right now. Dialysis patients are playing Russian roulette with every blackout. Cuba has received ZERO oil in 3 months. That's not a shortage. That's a blockade. The US blocked a Russian rescue mission — 730,000 barrels of oil heading to Cuba — turned it away. Then the official story went: "We're sending $6 million in humanitarian aid." $6 million in aid. 930,000 barrels of oil blocked. You can't fix ventilators with $6 million when the grid is dark. And Trump's own words from March 6, 2026: "Cuba will fall. After 50 years, this is the cherry on top of the cake." The people dying in hospitals tonight are his cherry on top. I'll keep you updated. Turn on notifications. 🚨

Brain fog mistake on this. They need a MALE with Long Covid aged 56-65, who can be at MIT for site visit by April. My apologies.

They're not even trying to hide what the SAVE Act is really all about. It's about making sure only the "right people" vote. It's to "guarantee the midterms." They're trying to silence your voice and protect their own power.

🚨HELL YES!!! JB Pritzker just dropped the mic and is calling for Project 2029. A blueprint to UNDO TRUMP. His plan would: -PROSECUTE Trump crooks who broke laws, abused power, and attacked our democracy. - Promote justice, reestablish our relationships, and rights that WORK for ALL. IT’S ABOUT DAMN TIME. No more chaos. No more impunity. No more letting fascists run wild. Democrats are DONE playing nice. LFG.

Here's a suggestion for people who think the covid pandemic is over:

I’m in Cuba. What I’m witnessing is American imperialism murdering the Cuban people. We are nothing but rich terrorists and soulless murderers. Viva Cuba.

Finland is offering artists up to €3,800/month to slow down and just make work. No exhibitions required, no performances. Just you, a quiet countryside residence, and two uninterrupted months. The Saari Residence 2027 is open to artists, writers, poets, translators, composers and curators of all nationalities. Collective applications (up to 10 people) are also welcome. Deadline is 31 March 2026 and it’s free to apply. Full details on koneensaatio.fi/en/saari-resid…

We’re launching a placebo-controlled study of rapamycin for #MECFS and #LongCOVID. Early data from our Phase II trial shows promise — now we must test it under rigorous blinded conditions. Help us make it happen. Donate to support the study. simmaronresearch.com/donate #ME #Rapamycin

A friend in Cuba just notified me that every single patient in that hospital that was on ventilators died tonight. I don’t have words.

MIT’s MAESTRO study for Lyme & Long Covid is still recruiting. They need one more patient to finish data collection, specifically a person with Long Covid aged 56-65, who can travel to MIT by early April. #LongCovid talresearchgroup.mit.edu/mitmaestro

One last post to highlight this survey. If you have #ME/CFS or #Longcovid and have tried hyperbaric oxygen please complete this survey. All experiences important. You can stop and complete at a different time allowing you to pace. Thanks @PhysiosForME physiosforme.com/post/new-surve…

@NeurologistMom 😿

@twoShaws Yes, I’ve been doing this every day. It doesn’t work.

I need help with a bug affecting my account. Please share this to help me be heard. I’ve reported the problem several times, but it hasn’t been fixed. I was in Taiwan for my daughter’s treatment for two months, and I came back over a month ago. It still shows my account as based in Taiwan. With X’s new feature, the region restriction, I may not be allowed to comment on posts in the area where I live, the USA. This already happened with this quoted post, and it didn’t allow me to comment. I opened this account to stay in touch with the patient community, especially in the country I live in. I can’t do that anymore because of this bug in the system. Could you please help fix it? The community we’ve created on X is our lifeline as patients. @nikitabier @elonmusk

@NeurologistMom Please ignore if irrelevant… Have you tried this (see screenshots)? Click on: - Three dots - Settings & privacy (in pop-up menu) - Your account - Account Information - Country

@twoShaws No. You should check the “Joined …” section to see where the account is based.

@atranscendedman - ME/CFS isn’t taught in U.S. med schools. Same w/ LC? - Most med. education textbooks contain dangerous errors about ME based on outdated, unproven theories, not on biomedical research - Lack of physician training on ME (&LC?) increases serious risks of misdiagnoses & med errors

I’m talking to the NIH next week about what it’s like to live with Long COVID. What’s the one thing people still don’t understand and the part that really needs to be seen and said out loud?

@NeurologistMom What a mess… 🤯💔

@sunsopeningband The itaconate shunt hypothesis? Part 1: youtube.com/watch?v=RiVDNh… Part 2: youtube.com/watch?v=PCnkkL…

I know the immune system takes a central role in many people's imagination for the pathophysiology of #MECFS and related conditions but few people are asking why the immune system is acting that way. (And at least according to current data, the answer isn't pathogen persistence.)