iiinova — where your digital self keeps evolving

Lisa Segal @lisas25.bsky.social · 10/09/2025

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.

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Lisa Segal @lisas25.bsky.social · 18/07/2025

@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.

unbreaking.org

Unbreaking

How the administration is breaking the government, and what that means for all of us.

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Max Kozlov @maxkozlov.bsky.social · 15/07/2025

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.

nature.com

Exclusive: NIH to dismiss dozens of grant reviewers to align with Trump priorities

The move would undo years of work, leaving advisory councils understaffed, and without the full expertise needed for reviews.

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Lisa Segal @lisas25.bsky.social · 21/05/2025

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. ❤️

Spice, our white with black spots pitbull mix pup, on the couch with a soft toy.

Spice sitting very tall looking out the door.

Spice’s white head looking out from under a blanket.

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Lisa Segal @lisas25.bsky.social · 15/05/2025

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

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Andrea Ritchie @dreanyc123.bsky.social · 08/04/2025

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...

freep.com

Lawyer for U-M protester detained at airport after spring break trip with family

Dearborn lawyer says feds tried to seize his cellphone at Detroit Metro Airport as he returned from spring break trip with his family.

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Rio Tazewell @riotazewell.bsky.social · 04/04/2025

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

handsoff2025.com

Hands Off!

Donald Trump and Elon Musk think this country belongs to them. They're taking everything they can get their hands on and daring the world to stop them. On Saturday, April 5th, we're taking to the stre...

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Lisa Segal @lisas25.bsky.social · 06/03/2025

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.

protectmypublicmedia.org

Protect My Public Media

Take a stand for the local stations and programs you love.

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Kara Jorgensen @authorkaraj.bsky.social · 22/01/2025

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.

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Lisa Segal @lisas25.bsky.social · 16/11/2024

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.

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Patrick Skinner @pmskinner.bsky.social · 14/11/2024

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.

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Lisa Segal @lisas25.bsky.social · 12/11/2024

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

A photo of Joseph Fasano‘s book, The Last Song of the World, with the cover art “Orpheus.” The book is on a wooden mantle, leaning up against two old wooden candlesticks and a tan pottery crock with red flowers.

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Lisa Segal @lisas25.bsky.social · 11/11/2024

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

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Lisa Segal @lisas25.bsky.social · 11/11/2024

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

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Lisa Segal @lisas25.bsky.social · 08/11/2024

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?

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A L I E N Cerny @alancerny.bsky.social · 06/11/2024

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:...

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Hayes Brown @hayesbrown.bsky.social · 06/11/2024

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

Three rows of double panels depicting a raccoon, drawn by RedGoldSparks:
- when you feel like everyone hates you // sleep
- when you feel like you hate everyone // eat
- when you feel like you hate yourself // shower

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Lisa Segal @lisas25.bsky.social · 05/11/2024

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.

A picture of Baxter’s face, gray with and white, looking directly into the camera, with his deep brown intelligent and loving eyes.

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Ed Yong is offline @edyong209.bsky.social · 14/11/2023

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.

thesicktimes.org

Welcome to The Sick Times, a letter from our co-founder Miles W. Griffis

It’s not mysterious. A highly contagious airborne virus has spread around the world for the past four years and continues to infect people as I write. SARS-Cov-2 has killed an excess of 23 million �...

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Lisa Segal @lisas25.bsky.social · 29/11/2023

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! ❤️

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Lisa Segal @lisas25.bsky.social · 10/10/2023

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 👏🏼👏🏼🩷💙

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Lisa Segal @lisas25.bsky.social · 09/10/2023

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! ❤️

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Lisa Segal @lisas25.bsky.social · 08/10/2023

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

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Lisa Segal @lisas25.bsky.social · 07/10/2023

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. ❤️

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Lisa Segal @lisas25.bsky.social · 07/10/2023

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!

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Lisa Segal @lisas25.bsky.social · 06/10/2023

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

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C.H. Romatowski @romatowski.bsky.social · 30/08/2023

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.

popsci.com

What patients find at long COVID clinics: rejection, outdated therapies, and unanswered questions

Patients seeking long COVID treatment say that even at specialized post-COVID care centers and clinics, doctors have ignored their concerns and symptoms.

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Lisa Segal @lisas25.bsky.social · 06/10/2023

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)

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Lisa Segal @lisas25.bsky.social · 06/10/2023

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

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Julie Rehmeyer @julierehmeyer.bsky.social · 04/10/2023

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

Email to support@bluesky.com saying: I’ve been working to organize the chronic illness community and help them get to Blue Sky. As a result, more than 1500 chronically ill people have gotten codes to join Blue Sky, and the community is coming together really well.

However, I’m concerned about accessibility issues. In particular, i’ve learned that the site currently functions very poorly for those who use screen readers. See this tweet, for example: https://twitter.com/blind_scholar/status/1709359830564245702. While I really appreciate the way you have prioritized alt text on Blue Sky, this is a key access issue. Can you let me know how soon you plan to address it?

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Julie Rehmeyer @julierehmeyer.bsky.social · 30/09/2023

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...

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Alyssa Miller 🦄👩‍✈️ @alyssam-infosec.com · 29/09/2023

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

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hilzoy @hilzoy.bsky.social · 19/09/2023

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. 🤗

cdc.gov

Bridge Access Program | CDCCenters for Disease Control and Prevention. CDC twenty four seven. Saving...

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