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.

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 education textbooks contain dangerous errors about ME based on outdated, unproven theories, not on biomedical research - Lack of physician training on ME (&LC?)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.)

(Gift) Miami Herald Exclusive: Corrections officer tells FBI, federal judge, that boxes of documents were shredded at the Metropolitan Corrections Center after Epstein's death. Feds also talk about missing files miamiherald.com/news/local/cri…

If you are a healthcare worker with Long COVID, please fill out this survey twu.qualtrics.com/jfe/form/SV_0j…

“Chronic hunger” at American concentration camps reported by USA Today. usatoday.com/story/news/nat…

THREAD: Cherise Doyley was in her 12th hour of contractions at the hospital when a tablet was brought to her bedside. On the screen was a Zoom call with a judge and several lawyers and doctors. She was in court, a nurse told her. The reason? For failing to agree to a C-section.

17/ We know there are more women who have had C-sections against their will, and we want to better understand their experiences. If you have a story to share, please reach out to amy.yurkanin@propublica.org.

Evidently “secrecy” is necessary when drug resistant C. auris is spreading from person-to-person. Our public health experts tell us we can’t disclose C. auris outbreaks because it “frightens patients.”

Yeah, the deadly drug resistant superbug currently “jumping from person-to-person” has been doing so since JANUARY, and we didn’t hear about it. ajc.com/pulse/cdc-dead…

Like, that’s not even a debate. 🤷🏻‍♂️