@sharonrmecfs.bsky.social @coolforcats9.bsky.social @carolclouds.bsky.social @ceknapp.bsky.social @jitzamna.bsky.social @popns.bsky.social @zanyzue.bsky.social @bastsbest.bsky.social @newfymainlander.bsky.social @writenrun.bsky.social @littleann4ever.bsky.social @sabrinapoirier.bsky.social

@newfymainlander.bsky.social @writenrun.bsky.social @littleann4ever.bsky.social @sabrinapoirier.bsky.social @hershelman.bsky.social @hillygirl1979.bsky.social @crankycartoons.bsky.social @lianapaiva.bsky.social @kattifur.bsky.social @j-sonearmyonce.bsky.social @nicknobbe.bsky.social

These are the victim impact statements submitted at Ghislaine Maxwell's sentencing. It's the official DOJ document. “They had been abusing young females for many, many, many years. This is the longest-running sex trafficking scheme in history that I've ever come across."

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights

There's going to be an important by-election in Halifax, and our candidate, Shannon Miedema, is ready to deliver for her community and bring their voices to Parliament.

What happened inside the WH after the Oval shouting match: Trump huddled with his key advisers immediately afterward inside the Oval. According to a White House official, Trump consulted Vance, Rubio, Bessent, etc. That was when Trump decided that Zelensky was "not in a place to negotiate."

Justin Trudeau Prime Minister of Canada 👏

I won't be purchasing anything tomorrow unless it's an emergency. Yes, I'm aware that won't fix the world, but I see this as practice for strikes and longer boycotting. Let's go 👍

“Be brave” @janefonda.com

Maddow: That has never happened at this scale in this way before when it comes to programing changes, presumably because it's not the right way to treat people and it kind of drops the bottom out of whether or not people feel like this is a good place to work

it's good that her charges were dropped, but keep in mind that The Process is The Punishment. She was intimidated, jailed, her life was forever disrupted because she had the audacity to be mean to someone denying her healthcare on the phone.

Have you heard what happened to Dr. Teresa Borrenpohl at a community town hall? Google her name and @newsweek.com to see the article and the video. This is her GoFundMe. www.gofundme.com/f/justice-fo...

Watch the Solve - Bateman Horne Center webinar “Severe #MECFS Research: Removing Barriers to Access” w/ @sabrinapoirier.bsky.social of @icancmeresearch.bsky.social & Dr. David Putrino (Dept. of Rehabilitation & Human Performance @ Icahn School of Medicine at Mount Sinai). youtu.be/65apr_RsdFM

I know it sounds like hyperbole to start talking about eugenics, but when you have the most powerful person in America throwing Nazi salutes just as his minions start removing all mentions of disability and inclusion from government documents and suing to deny healthcare to disabled folks. Well.

Some context about the 17 states suing in full-throated support of disability discrimination

The amazing #JohnVsJonVsME campaign to get John Oliver and Jon Stewart to cover #MECFS and the #GreatestMEdicalScandal is launching a special edition on Valentine's Day. If you can, please participate by spreading the word, making own memes or boosting other posts 🙏 Details in the thread below.

Please do not fall for any of the lies being told in the theatre of a confirmation hearing. He doesn’t care and he won’t be helpful to us in any way. He will barge in with ableist pseudoscience that will push us back 20 years. Stop propping him up. Please.

3 different medications cost me less than $30 total in December. Today, they cost over $1,000. They cost my entire monthly income as a severely-disabled, bedbound person on #SSDI and #Medicare. This is what eugenics looks like.

Biomedical scientist who works in cancer & infectious disease life sciences biotech here: Banning US scientists from communicating with the WHO threatens humanity. Banning communication about emerging health risks like disease outbreaks & food recalls threatens humanity. 1/

Lots of new followers all of a sudden. Was it the Solve/Bateman Horne Center webinar that Dr. Putrino and I did together? Or is it something else?

This is happening in the great state of Massachusetts. Head on a swivel out there yall.

If you are a visa holder/temp resident in the U.S., and your child was born here and doesn't have a passport, GET A PASSPORT FOR THEM IMMEDIATELY. Like, make the appointment this week. www.nytimes.com/2025/01/21/u...

Also really great to hear about some of the very basic barriers to study participation for people with severe ME, e.g. links that don't work, surveys that are too long with no breaks, etc.

Really excellent webinar happening right now with @putrinolab.bsky.social and @sabrinapoirier.bsky.social. Appreciated the discussion of medication reactions at the beginning especially, and am making a note for myself to read more about herxing.

A lot of my role as caregiver winds up being following them around making sure they wear their mask properly, don't turn on the bright overhead light, communicate in an accessible way, etc.

Huge shoutout to @sabrinapoirier.bsky.social for talking about how even if nurses come to the home, they need to be trained about ME in order to avoid triggering PEM and throwing off the study results. We have a lot of nurses, phlebotomists, etc. come to the home and they are ALL clueless.

A great webinar on severe ME research with @sabrinapoirier.bsky.social and @putrinolab.bsky.social. Please register and participate!

"Scientists calculated that the incidence of ME/CFS is now 15 times higher than pre-pandemic levels, and found that people with a history of COVID are almost eight times as likely to develop the chronic condition." 🧪 www.iflscience.com/people-whove...

Please join me in welcoming @defendpublichealth.bsky.social to BlueSky. This is a group I’m involved with. We’re just getting started but already I can tell you that there are many brilliant and deeply passionate individuals who care about science and fighting misinformation and disinformation.

Please join @putrinolab.bsky.social and I for this free webinar on Tuesday where we will be talking about increasing accessibility and collaboration in research. 👇 Thanks for hosting us and this discussion @solveme.bsky.social and @batemanhornecenter.bsky.social ! 💙

Our lab is working now on a manuscript showing how the presence of SARS-CoV-2 in the brain directly increases the fibrillation of amyloid protein. We need other labs and more people working on these questions, how viral infections can contribute to neurodegeneration? #NeuroCovid

Out today at www.nature.com/articles/s41... These numbers are crazy. A generation of young people with dementia waits for us in the near future, and we are not prepared for that. #NeuroCovid

Hey everyone. I have updated my starter pack of community leaders, advocates, researchers, clinicians, patients and carers from our #LongCOVID and #MyalgicEncephalomyelitis community. Please check it out and feel free to share. go.bsky.app/6R7bqc7

And here is starts… Not ok Meta. It’s just another reason why many of us are trying to figure out how to break up with you.

When your house has burned down, when your spouse has died of COVID, when your 25 y.o. kid has dementia, when you have no care for your own cancer, and there is nothing to eat and no water to drink, take comfort in the fact that the stock market is doing gangbusters.

#Medsky🧪 #IDSky #Drugrepurposing #pharmSky #SkyRx after almost two decades of the clinical use of GLP-1 for T2D & 10 years after the first GLP-1 , liraglutide, was approved for weight loss in people with obesity,

All of Us has been a really interesting initiative. Seeing their funding drop to this extent is sobering.

This artists access statement is tremendous. I want this for all of us. All shows, not just ones made by and about ME/CFS & the ongoing pandemic

I am really struggling these days. Just want to thank those who are offering support with projects or laughter, as both are much appreciated. 💙

Mark, there's a whole other angle to do no harm: and it isn't about actions but rather INACTIONS, on #mecfs and #longcovid. The whole sentiment that it is mysterious, the failure by and large to get ANY treatments approved 5 years into the pandemic. So. Much. Harm. Thank you for bucking the trend.

Nearly 300 British healthcare workers with Long Covid to sue health service for compensation They were not given adequate PPE "and often had to rely on flimsy surgical masks" www.context.news/socioeconomi...

We need much better #ResearchDesign in the #ChronicPain space. Especially as it relates to #chronic #pain, driven by #ChronicIllness. Because current research is so disrespectful (“false” signals, pain “sensitization”, etc) and gaslighting to patients who are suffering deeply. 1/

I'm not surprised that the UHC CEO shooter, who has back pain, appears to be a fan of Andrew Huberman. Huberman promotes a lot of pseudoscience on how people can feel better mentally and physically, which could send appealing if you have chronic pain.

"Modelling study based on almost 250,000 positive COVID-19 tests in the United Kingdom shows that universal masking could have cut transmission markedly." www.nature.com/articles/d41...

The longer the flight the greater incidence of infection. Universal masking on flights reduced infections ti near zero. www.news-medical.net/news/2024052...

if you want to understand my chronic illness, ME/CFS, please have a look at this 5-post thread. this is the most concisely i've ever been able to explain it. p.s.: *anyone* can develop ME/CFS. bsky.app/profile/did:...

It’s so funny to me that there are dudes like my dad who were in the military during peace time, didn’t see any “action” and yet make it their entire identity, but have kids in healthcare who worked during Covid and saw more death and trauma than they ever have. But we’re the snowflakes