The only public communication from CDC since April 1 has been a single Twitter post promoting RFK Jr., which CDC staff described as “propaganda.” All usual notices, reports, & other forms of public communication - including information about new disease outbreaks in the US - have been blocked by HHS

Understanding dysautonomia played a significant role in advocating for my Sjogren’s diagnosis. Excellent article that dispels myths around this autoimmune disease. dysautonomiainternational.org/blog/wordpre...

This book is the perfect companion to Sjogrens advocate. I provide the medical information for self advocacy – she goes the next step and shows you what to do when you have trouble getting clinicians to pay attention and offer the care you need.

There's something called the crip tax because it's more expensive to be disabled. Tariffs rising the costs of meds and other supplies will make the crip tax even worse.

This is an amazing book. Especially if you have Sjogren’s or other complex, chronic diseases. Lots of practical tools and strategies, especially if you are dealing with unreceptive clinicians.

Excellent guest blog post by @sarahschafermd.bsky.social about the ties to #dysautonomia & #Sjogrens dysautonomiainternational.org/blog/wordpre... #sjogrensawareness #aprilsjogrensawareness

It’s important to consider the possibility of Sjogren’s in people with Dysautonomia, even if they don’t have dryness. Timely diagnosis and treatment of Sjogren’s improves outcomes. It’s a serious, systemic disease, never just dryness.

I resist the administration's inhumane cuts to NIH cancer research while I fight stage IV cancer. Thx for the follow @raisencain.bsky.social @montanawill71.bsky.social @jperryfarm.bsky.social @twisted257.bsky.social @chiefsbride.bsky.social @kay-lo-bay.bsky.social @carolcook75.bsky.social

Thank you, Cristina for being part of an amazing team of wise Sjogrens educators and advocates. Always appreciate your incredible nutrition information. 👇👇

Hi #Sjogrens friends, advocates & researchers! Created this starter pack so we can start some conversations here. go.bsky.app/BUT9aVB

Sjögren’s is systemic. Nearly universally it causes fatigue and pain & can cause interstitial lung disease, dysautonomia, gastric motility issues, liver and kidney disease and so much more. It deserves to be recognized for the serious condition it is. Where are my fellow Sjogies & allies? 3/3

Let me be clear: • Sjögren’s is NOT rare. • Sjögren’s is NOT mild. • Sjögren’s is NOT localized. • Sjögren’s is NOT a nuisance condition. • And Sjögren’s is definitely NOT “the best autoimmune disease you could have.” 2/3

While I applaud the search for less invasive diagnostic tests for Sjogren’s, this study and other recent efforts reflect the misunderstanding of Sjogren’s as primarily a dryness (sicca) disease. 🧵 www.healio.com/news/rheumat...

Highly recommend this app.

Wow

I keep thinking about this chart

Great follow!

There is a disconnect between the realities of Sjogren’s vs. how it is diagnosed and treated. Most with Sjogren’s remain undiagnosed because clinicians don’t recognize it & often don’t know how to diagnose it or manage it. A 🧵 1/

One of the great graphics from someone else on my Google Drive. drive.google.com/drive/folder...

Inspiring follow. I love Dr Neville’s posts and the 3 wishes program.

Did you develop Long Covid after dropping precautions bc you believed the Great Barrington Declaration that young people will be fine if they get Covid-19? Please be in touch at [email protected] for a potential @motherjones.com article and reposts are appreciated.

It's Official: Sjogren's DISEASE, not syndrome, has been accepted by the international community. This better reflects the serious systemic nature of the disease, which is never limited to sicca. Learn more: www.sjogrensadvocate.com/post/new-sel...

If you have any reach on Bluesky, please consider reposting so I can find old and new friends (and then I’ll follow you back 😊). I'm Alexander Verbeek and publish about the climate crisis, environment, the beauty of nature, science, walking, sustainability, wildlife, photography, water, and energy.

I highly recommend this amazing resource! 🌟🌟🌟🌟🌟

Great follow👇

💯 I’m so tired of hearing people talk about the pandemic in the past tense. Covid continues to be a major death, but damage is cumulative. More and more people suffer disability from repeated infections. We know how to prevent transmission, but would rather pretend it’s over.

Let’s make Bluesky a safe heaven for ALL communities. No haters allowed here !

Putrino Lab are on Bluesky 🙌

WHO: Look, We Know We Said That It Was Not Airborne, But We’d Like To Clarify That By Denying That We Are Uncertain That It isn’t Not Not Not Not Not Not Airborne

Hi @sjpopkin.  Just checking to see if you are here.