H5N1 U.S. Tracker Lots of H5N1 about. Source: www.ginkgobiosecurity.com/h5n1-us-trac...

This one hits too hard.

Telehealth was something disabled people had spent years begging for. It’s a game changer when you have an energy limiting chronic illness. It’s hard to imagine any legitimate reason to remove it - it will cause harm. Let patients access care in the way that is safest for them.

Today in Hell Yes, Research! When autistic children learned about autism "in a neutral and non-stigmatizing manner," & from autistic people with lived experience, it improved their self-understanding, sense of belonging, and their communication/self-advocacy skills. www.medrxiv.org/content/10.1...

Reminder: you don’t have to be good at something to enjoy it, you don’t have to get better at it, you don’t have to monetize it, and it doesn’t have to be useful.

Dr. Yellman is speaking next Friday 12/6/24, 1p Eastern US, to @renegaderesearch.bsky.social hosted by @isabelrb.bsky.social and Renegade Team. Free. Will be recorded + posted to Remission Biome channel on YouTube. Advantage of attending live? The Q&A. Register us06web.zoom.us/webinar/regi...

Big news! Every CA wastewater site monitored by #WastewaterScan has had a #H5N1 bird flu hit in the past 2 weeks. EVERY SINGLE ONE.

Our new study shows that SARS-CoV-2 spike protein accumulates & persists in the body for years after infection, especially in the skull-meninges-brain axis, potentially driving long COVID. mRNA vaccines help but cannot stop it🔬🧠🦠🧵Your weekend read👇 @cellpress.bsky.social cell.com/cell-host-mi...

Living w/ ME: Sadly, the longer it takes to get a diagnosis, the worse the condition can get, and before you know it, you’ve lost your job and your quality of life has taken a nosedive. The stigma surrounding ME is a massive barrier to getting the help we need. wellcomecollection.org/stories/livi...

For anyone who needs a reminder tonight - your value is not tied to your ability to work or participate in capitalism. In fact - being disabled IS work. People have no idea how much work. They imagine it like a vacation - laying around all day doing whatever fun activities you most enjoy. 🧵

I think we need to discuss morally questionable societal norms when we have ££ to invest on a full blown advertising campaign for MAID like it’s a free holiday, but aren’t investing the appropriate amount to ££ for research,treatment & support to improve lives of the chronically disabled community

“The number of people classed as economically inactive - not employed or actively looking for work - has jumped to more than 9 million. It surged during Covid but remains persistently high” That’s what happens when you mass infect a population with SARS. #LongCovid www.bbc.com/news/article...

#LongCOVID RESEARCH looking for participants! Research opportunity on long COVID, employment, & disability benefits for recruitment. This research is led by Deborah Lefkowitz, PhD at the University of California, Riverside, with a fellowship supported by the Social Security Administration. (1/4) 🧵

Less than two weeks away from my 3-year long covid anniversary (almost 9 years of chronic illness) and we’re dealing with unexpected unemployment (both partner & me) and major extended family issues. Lots of thoughts and feelings, but mostly working extra hard on pacing with Thanksgiving coming.

At least 5 women have died due to abortion bans in Texas & Georgia—Candi Miller, Amber Thurman, Josseli Barnica, Nevaeh Crain; and now, Porsha Ngumezi. 3 victims were Black, one Latina. 2 were immigrants. One was just 18. All women are at risk—but women of color, immigrants and teens most of all.

Do you think you've had long-term GI problems since having Covid? We are performing a study examining the characteristics of viruses, specifically persistent SARS-CoV-2 infections, in stool samples. 1/3

⚠️ BREAKING: Wastewater in Saint Petersburg, Florida has tested positive for H5 bird flu. Florida has no known active outbreak of bird flu in dairy cows or poultry.

Almost everything you might do for fun CAN be done while wearing a respirator. You can “live your life” while protecting yourself an others. You can’t “live your life” the same way once you’re chronically ill. Wearing a respirator will seem like a small sacrifice compared to losing your health.

Society sees chronic illness and disability as negative, shameful, and something to overcome or defeat. It’s nothing to be ashamed of and can happen to anyone. Oftentimes, we can’t overcome it. We just have to learn to live with it in the best way we know how.

My kiddo’s POTS specialist (peds cardio) claims that ME/CFS and long covid don’t exist - they’re “just dysautonomia.” Just need to follow POTS treatment plan. Except… my kiddo is still sick, still has severe fatigue, brain fog, immune dysfunction… despite treatment & major POTS improvement.

A reminder that if you're feeling saddened by the failure of the Berlin Cures trial for Long Covid, you can check out the pipeline of #LongCovid, #MECFS & other IACC clinical trials here on CrunchME 💊👇 Just added a bunch more, and more to add still! crunchme.notion.site/4d00e39f9f87...

@putrinolab.bsky.social & CoRE are seeking participants in the NYC area for this PolyBio-supported lumbrokinase trial 👇🏻 They are accepting patients with the following diagnoses: Long COVID, Pre-2020 ME/CFS or Post-treatment Lyme Disease. Reach out to [email protected] to sign up.

I appreciate liberals suddenly caring about disinformation again, but those of us that've been tending this home fire for the past four years are gonna need y'all to recognize the covid disinformation you need to undo in your own mind if you want to stand in solidarity with disabled people.

“I want more clinical trials focused on cures and effective treatments. We want treatments that are actually getting at the underlying causes and not just sticking a band aid on symptoms,” Katherine, a parent of a 16-year old with Long COVID told The Sick Times.

Our mere existence is an act of rebellion. A rebellion against a society, a medical establishment, which denies our experiences and reality. A rebellion against a capitalist system which removes value from the lives of those who cannot work through no fault of their own. #MECFS #MillionsMissing

Urgent! ☎️📢🗣️

Long covid: A guide for primary care (Published 22 September 2022) www.bmj.com/content/378/...

He doesn't have a profile pic yet but for those that don't know: David Putrino is one of the best physicians in the ME/CFS & Long Covid game. This whole thread should be required reading for any doctor. #MedSky

I researched implementing evidence-based practices for my PhD and I wish I could go back and show myself how impossible it is to access care that is kind and helpful with no known interventions within the landscape of EBP-only care. There is none. A lot of “I’m so sorry. See me back in 6 months.”

"But as long as we're methodical in investigating potential target drugs… then we stand a chance of getting more sophisticated combination drug trials within the next 12 to 24 months. That could lead to some real hope for people living with these infection-associated chronic conditions.”

Long Covid Advocacy's response to The ME Association in solidarity with #ThereForME

We strongly suggest that academic publishers and other platforms that host research rapidly implement a Share to Bluesky button for their articles. Here's how: docs.bsky.app/docs/advance... #AcademicSky #HigherEd #Altmetrics

US: Long COVID may be far more common than previously known. "Almost 1 in 4 Americans may be suffering from long COVID, a rate more than 3 times higher than the most common number cited by federal officials" Study: www.sciencedirect.com/science/arti... Source: archive.md/VsBcm

What GIF comes up when you type in your name?

Figuring out how to lay on the couch and make friendship bracelets. 🌈

“…journalists can, instead, act as a care-taking profession — one that soothes and nurtures. And we are among the only professions that can do so at a scale commensurate with the scope of the crises before us. We can make people who feel invisible feel seen. We can make everyone else look.”

I hope the folks on my feed who thought this dude might still be a good choice to lead health policy are now clear eyed about the deeply mistaken impression they have. If implemented, this proposed “break” would be an unmitigated health and economic disaster. www.nbcnews.com/politics/pol...

6/9 Cutting-edge research on #ME #LongCovid #IACC is already being done! Follow the groups below & join in the scientific joy. We need more folks to learn about #GreatestMEdicalScandal & advocate for adequate biomedical research funding @hankgreen.bsky.social @johngreensbluesky.bsky.social 🧵

PolyBio is excited to begin sharing our #LongCovid, #MECFS and #Lyme+ research on #BlueSky! If you’re still getting to know us, we lead the #LongCovid Research Consortium: a global collaboration between top research teams to comprehensively study LC, focusing on SARS-CoV-2 persistence in tissue.

“When you have your health, you have everything. When you do not have your health, nothing else matters at all.” - Augusten Burroughs

PolyBio’s Long COVID research consortium members @putrinolab.bsky.social & #MichaelPeluso collaborated at NY’s Grand Rounds to educate the physician community on navigating #LongCovid treatment. The expert panelists discussed key tools & research to tackle this #publichealth crisis.

My first friendship bracelet…

I’ve been looking for a non-demanding hobby for a while. I ended up buying embroidery floss to fix my sleep mask, so I’m thinking about making ✨friendship bracelets✨. Any suggestions? Favorite patterns? Color combos? Tips for weak/tired fingers? 🌈🧵

As patients, we are sick and in pain. It should not be up to us to say exactly the right thing in exactly the right way so that a doctor will help us. #NEISvoid #ChronicIllness #ChronicPain

Started a Renegade Research list. bsky.app/profile/did:...

A reminder that #MECFS & % of #LongCOVID , can have #POTS but even those with relatively normal HR/BP to orthostatic challenge, still significant orthostatic brain hypoperfusion www.sciencedirect.com/science/arti...