People with severe ME and chronic pain from SFN & other conditions need carers who help. When a carer becomes abusive we are in trouble. When the carer becomes physically abusive we have hit the place where there is no place to go.

@unbreaking.org is doing essential work. Sign up for their newsletter, follow them here, and sign up for @lizneeley.bsky.social newsletter as well! Much needed and outstanding work and content.

NEW: In an unprecedented move, the NIH will soon disinvite dozens of scientists about to take positions on advisory councils that make final decisions on grant funding. NIH staff were told to select others aligned with the Trump administration and told to expect placements by political appointees.

Introducing Spiced Latte, a/k/a Spice! He’s almost 6 months old. Runs and jumps like a rabbit. Major snuggle bug. He’s fine as long as he doesn’t lose sight of us. Celebrating his first full week home with us. ❤️

Need help from people with Sjogren’s whether diagnosed or not. What kind of doctors are you seeing? What kind of help are they providing? If not diagnosed, would they still see you? Also, any doctors you would recommend in either New York City or Boston? Thank you!🙏🏼 #Sjogren’s

Lawyers be forewarned, be prepared, be like Makled. And remember the fact that someone is your client is also covered by atty client privilege (for as long as that lasts) www.freep.com/story/news/l...

It's time for the biggest protest this country has seen in years: refuting Trump, Musk and their billionaire cronies. THIS SATURDAY there will be 1200+ rallies in all 50 states united by a simple message. HANDS OFF OUR FREEDOMS HANDS OFF OUR DEMOCRACY HANDS OFF OUR ECONOMY handsoff2025.com

protectmypublicmedia.org Today, March 6 is Protect My Public Media Day – a national day of action to urge Congress to protect & sustain public media funding. With a critical government funding deadline on March 14, & increasing calls to defund public media, this is a pivotal moment to take action.

All NIH studies are on hold as are grants, research, etc. Please call your reps and senators to tell them you are concerned. Pressure is needed.

Our beloved dog, Baxter, died on 11/2. He was old, had cancer, & we had to have him euthanized. Grief overwhelming. Rescue always. He rescued us. Then the election. On that I am numb now. For Baxter the grief & missing is always, accompanied by kitty purrs who seem to know.

Your new king has arrived. He doesn’t do the whole nominations and confirmations. He’s a tyrant but he’s our tyrant. Until he ends us all.

Joseph Fasano has a new book of poetry - The Last Song of the World. In these troubled times it’s a necessary and beautiful collection of poems that are full of life. His poems speak to our souls, be they in trouble, yearning, or in need of love. @Joseph_Fasano_ @boaeditions

This is the day! Vote for Simon!! (He really needs your votes)

Block it.

This is the day! Vote for Simon!! (He really needs your votes)

Chronically ill folks in the U.S. - we are left on our own to find drs, make appointments, figure out insurance, be our own knowledgeable advocate, and more, w/out the energy - physical & cognitive, to take this on. Is there any way to pay a patient advocate to take on these tasks?

This may be helpful for you new followers. You can block every single person on these lists. Just click on the subscribe button and it will give you the option to block every one on it. Here’s the first: bsky.app/profile/did:...

A reminder for the next few days when each of these may be harder than normal to remember

Absolutely cannot cope

This, from the great @juliusgoat.bsky.social, is great.

Best dog ever. Baxter died on Sunday, November 3, 2024. Although we adopted him when he was 10 (he made us smile for 3.5 years), he had a second puppyhood after he was brought back to good health and much love. He voted early for peace and joy, which was him in every way. Choose love.

Very cool. Betsy Ladyzhets and Miles Griffis have launched THE SICK TIMES--a new digital newsroom devoted to covering long COVID. Here's the launch letter, and there's a newsletter you can subscribe to: thesicktimes.org/newsletter/ I trust these folks and am excited to see where this goes.

Good news! @perospumpeh.bsky.social has joined us! From the Long Covid community with much to add to the discussion. 🎊 Thanks again to @julierehmeyer.bsky.social for helping us! ❤️

Many thanks to @allyann.bsky.social for this outstanding list of feeds which may be of interest to the chronically ill and the disability community. @julierehmeyer.bsky.social 👏🏼👏🏼🩷💙

Great news! Chloé @ellecarnitine.bsky.social has arrived! Thanks to @julierehmeyer.bsky.social for all the hard work involved in bringing us to the Blue Skies! ❤️

Excellent article about the WASF3 gene and what it means for ME/CFS. Thank you It’s ME(Jaime) @exceedhergrasp1.bsky.social and others! ❤️

What an expressive piece - it seems to me a dance - by @anilvanderzee.bsky.social So graceful while moving into the light after so long. Certainly his background as a professional ballerina shines through. I was so moved by Anil’s last film. Now this. ❤️

Yay! Lizzy @hopefullizzy.bsky.social arrived 6 days ago! She’s a love. We can’t be without her. ❤️❤️ Thanks to @julierehmeyer.bsky.social for helping us migrate to the sky!

Good news! Amy @alexandrite113.bsky.social has arrived! Thanks to @julierehmeyer.bsky.social for helping us all migrate over. ❤️

I’m so sorry for what they’re going through. Yes for most people some degree of symptom management is best available and even that is not competently administered in many Long Covid clinics. @mileswgriffis.bsky.social has an excellent, damning article about the state of care.

This is such a nifty tool to bring your Twitter followers over to Bluesky (if they’re here). Thanks to outstanding directions from @owasow.bsky.social my daughter had no trouble doing this. 😬😂 (true, she’s my tech support)

A good tool to find the people you follow on Twitter and bring them over to Bluesky. Thanks @owasow.bsky.social !

Hey guys! Let's support our low-vision friends and prod Blue Sky to improve the functionality for screenreades. Email [email protected] as Jaime and I have. Note that you can easily copy the text in the screenshot from the alt-text. #NEISVoid, #mecfs, #LongCovid

Just sent out another 70 invitation codes to chronically ill Twitter refugees! So grateful for the generosity of the donors and the willingness of the recipients to invest spoons in this. Here's the form again, if you're moved to donate a code: forms.gle/eCzSSEPXnqp8...

So a lot of people who are in unstable, abusive, and/or periodically violent living situations keep cell phones hidden for emergencies. If you know anyone in such a situation, make sure they know about FEMA's testing of its Wireless Emergency Alert (WEA) system next Wednesday. /1

PSA: the CDC has a program that pays for your COVID vaccine if your insurer won't. The guy at CVS told me that my insurer had not added the new vaccine to its formulary yet, so I'd need to pay $190. I told him about this program, showed him the website, and paid nothing. 🤗