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Emily Johnson

@emilyrj.bsky.social

4.6K followers 2.2K following 1.4K posts

Design, news/book edits, social media, PR, linguistics. Medical/academic research & data. Disability/accessibility in media. Patient advocate. #FBLC #EDS #pwME Same pic, slightly different handles on X, Substack, Mastadon. #Iowa ♿️🏳️‍🌈📚

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Emily Johnson @emilyrj.bsky.social · Jul 3

❤️ Please keep boosting, quote boosting, engaging with this ❤️

The more people who see it and donate, the sooner I can continue lifesaving neurosurgical care travels

2025, 2026 at least with lots of tests, surgeries, treatments on the table

Medicare, Medicaid cuts will make this even harder now 😢

Emily Johnson @emilyrj.bsky.social · Jun 26

So half of a bone compressing my jugular is stuck in a nerve bundle and can’t be removed rn without major permanent nerve damage (other half is out)

Neurosurgeon: going to have nightmares about this! (jokes and steroids help, my bones ruining my life stays a joke) www.gofundme.com/f/help-emily...

Donate to We've got your back! Help Emily get spinal care, organized by Jessica Smolinski

*PLEASE SHARE even if you can't donate* Hello everyone! This fu… Jessica Smolinski needs your support for We've got your back! Help Emily get spinal care

www.gofundme.com

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Hannah Levintova @h-lev.bsky.social · 17h

New from me: In March, FHFA director Bill Pulte made himself chairman of the board of Fannie Mae. But after, he did not file a required disclosure form tied to the role with the SEC—the same kind of paperwork error he has used to attack Trump's political foes. www.motherjones.com/politics/202...

The attack dog targeting Trump opponents over their paperwork hasn’t even filed his own

As chairman of the board of Fannie Mae, Bill Pulte was required to file a disclosure form with the SEC. He didn’t.

www.motherjones.com

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Chicago Sun-Times @chicago.suntimes.com · 17h

At the request of the U.S. Department of Justice, a Facebook group used by nearly 80,000 people to report sightings of federal immigration agents in the Chicago area has been taken down by the social media giant Meta, Facebook’s parent company.

Facebook suspends popular Chicago ICE-sightings group at Trump administration’s request

The group, "ICE Sighting-Chicagoland," has been increasingly used in the last five weeks of President Donald Trump’s intense deportation campaign to warn neighbors that federal agents are nearby.

trib.al

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paris martineau @paris.nyc · 19h

my latest investigation for @consumerreports.org is based on months of reporting and 60+ lab tests of leading protein supplements

we found that most protein powders and shakes have more lead in one serving than our experts say is safe to have in a day (🧵)

www.consumerreports.org/lead/protein...

Protein Powders and Shakes Contain High Levels of Lead - Consumer Reports

CR tests of 23 popular protein powders and shakes found that most contain high levels of lead.

www.consumerreports.org

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Andy Greenberg @agreenberg.bsky.social · 1d

Researchers pointed a satellite dish at the sky for 3 years and monitored what unencrypted data it picked up. The results were shocking: They obtained thousands of T-Mobile users' phone calls and texts, military and law enforcement secrets, much more: www.wired.com/story/satell... 🧵👇

Satellites Are Leaking the World’s Secrets: Calls, Texts, Military and Corporate Data

With just $800 in basic equipment, researchers found a stunning variety of data—including thousands of T-Mobile users’ calls and texts and even US military communications—sent by satellites unencrypte...

www.wired.com

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Andrew Couts @couts.bsky.social · 1d

NEW: A stunning new study finds that satellite transmissions—from calls and texts on T-Mobile to US and Mexico military communications—were sent unencrypted for any snoop to grab. @agreenberg.bsky.social and @mattburgess1.bsky.social have the scoop: www.wired.com/story/satell...

Satellites Are Leaking the World’s Secrets: Calls, Texts, Military and Corporate Data

www.wired.com

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Emily Johnson @emilyrj.bsky.social · 2d

Neurosurgery update: 1-2 more neurosurgery trips to go in 2026, with maybe 1 more trip for residual surgical and other care after

I’ve posted in updates, please check those — trying to rewrite very long body text

Please donate and share!

www.gofundme.com/f/help-emily...

Donate to We've got your back! Get Emily spine and brain care, organized by Jess Smolinski

*PLEASE SHARE even if you can't donate* Hello, everyone! This f… Jess Smolinski needs your support for We've got your back! Get Emily spine and brain care

www.gofundme.com

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Pavel @spavel.bsky.social · 2d

This post needs an updated re-issue because AI companies have truly come up with some incredibly novel ways to push this technology that no one wants onto people.

The AI age is the "age of no consent"

"Inevitability" means design decisions are no longer informed by user needs; now they are unilaterally imposed. The users are the ones being designed.

productpicnic.beehiiv.com

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Pavel @spavel.bsky.social · 2d

"Slashdot: What's the reason OneDrive tells users this setting can only be turned off 3 times a year?

[Microsoft's publicist chose not to answer this question.]"

Microsoft's OneDrive Begins Testing Face-Recognizing AI for Photos (for Some Preview Users) - Slashdot

I uploaded a photo on my phone to Microsoft's "OneDrive" file-hosting app — and there was a surprise waiting under Privacy and Permissions. "OneDrive uses AI to recognize faces in your photos.....

slashdot.org

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Oisín McGann @oisinmcgann.bsky.social · 2d

That’s not how consent works.

Pavel @spavel.bsky.social · 2d

bitch what

Onedrive settings. A toggle for using AI to detect and identify faces is set to on. The caption says, you can only turn off this setting 3 times per year.

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Julia Métraux @juliametraux.bsky.social · 3d

This article I had published at @motherjones.com in January feels very relevant with federal special ed office layoffs. Project 2025 targeted disability education services. www.motherjones.com/politics/202...

Project 2025's plan to dismantle public education—and screw over disabled kids

Nearly nine million students rely on DOE-backed disability accommodations.

www.motherjones.com

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Jared Yates Sexton @jysexton.bsky.social · 2d

It’s endlessly depressing watching all these tech oligarchs try and convince themselves they’re geniuses instead of people who just happened to benefit from capitalism requiring their products and then the entire political and banking system gassing them up with with free money and tireless support.

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Greg Sargent @gregsargent.bsky.social · 4d

This week, MAGA figures claimed Kristi Noem "stared down" violent antifa protesters in Portland. Turns out they were talking mostly about a guy in a chicken suit.

This episode opens a window into how MAGA propaganda works and MSM failure to handle it. 1/

(new piece)
newrepublic.com/article/2016...

MAGA Implodes over Kristi Noem’s “Stare Down” with Man in Chicken Suit

A good New York Times piece on Portland nevertheless demonstrates how the conventions of objective reporting fail to accurately capture the bad faith driving pro-Trump propaganda.

newrepublic.com

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Jacob T. Levy @jacobtlevy.bsky.social · 2d

The deportation order derives from the crime of which he has now been exonerated.

www.miamiherald.com/news/local/i...

He was wrongfully imprisoned for 43 years. Moments after being released, ICE took him

Subramanyam “Subu” Vedam now faces deportation.

www.miamiherald.com

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jamelle @jamellebouie.net · 2d

a key thing about vought — and all of these guys — is that they have a totally top down and hierarchical vision of the world. they believe that the cultural changes they hate can be turned off by destroying the federal government because they can’t imagine that they emerged bottom-up in society

Thomas Zimmer @thomaszimmer.bsky.social · 2d

What he’s railing against is a profound shift in culture, status… He’s obsessed with the idea that America is controlled by a leftist “ruling elite” - but “elite” isn’t defined socio-economically or by political power, it means something like: Getting to define “real America” and who gets to belong.

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Emily Johnson @emilyrj.bsky.social · 2d

“The U.S. Department of Education fired nearly everyone in the Office of Special Education and Rehabilitative Services in a wave of new layoffs, according to the union representing the agency's employees.”

Disabled people harmed via anti-DEI efforts again

www.usatoday.com/story/news/e...

Education Department wipes out special ed office in shutdown layoffs, union says

The Education Department laid off nearly everyone at the Office of Special Education and Rehabilitative Services.

www.usatoday.com

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Walker Bragman @walkerbragman.bsky.social · 4d

Letting it rip didn’t work

Emily Johnson @emilyrj.bsky.social · 4d

Bird flu cases are spiking, thanks to migration season.

“More than 4 million poultry birds were culled in the last month, in states including Minnesota and Iowa, after flocks tested positive for the virus, called H5N1.

States officials brace for a tough autumn. www.nbcnews.com/science/scie...

After a summer respite, bird flu is back

Bird flu is spreading again as water fowl migrate. In poultry, cases are spiking earlier than expected, so some state officials are bracing for a challenging autumn.

www.nbcnews.com

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#MEAction Network @meactnet.bsky.social · 12d

We are sharingthis fundraiser for a member of our community.

Unfortunately, they have moved from a skilled nursing facility to a board & care home which offers less services. They are at risk of losing that by the end of the year and face being unhoused.

Link: gofund.me/214539f33

#pwME #MECFS

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#MEAction Network @meactnet.bsky.social · 12d

PLEASE NOTE: We have moved this event to October 28 at 3 pm ET!

Join us for a virtual workshop- Dealing with Grief and Chronic Illness with Marisa Renee Lee. Register: ow.ly/ob5r50X5j5A

If need free ticket: forms.gle/rQYxuXUxddhs...

#pwME #MECFS #LongCovid #Spoonie

Graphic with details available in the post. Text against a purple backdrop. Bright star with text: New Date. Photo of the book Grief is Love at top of graphic. Text beneath: Dealing with Grief and Chronic Illness A workshop with Marisa Renee Lee Tuesday October 28th at 12 pm PT/ 3 pm ET. Tickets available for a suggested donation.

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#MEAction Network @meactnet.bsky.social · 5d

@meactnet.bsky.social's Executive Director, Laurie Jones, wrote a op-ed about the medicaid work requirements that was recently published in MedPage Today!

Thank a look below!👇

MedPage Today @medpagetoday.com · 6d

"There is nothing beautiful about shifting the burden onto those least able to bear it. But this is precisely what our nation is now poised to do."

ME/CFS and long COVID advocate Laurie Jones writes on Medicaid work requirements. https://www.medpagetoday.com/opinion/second-opinions/117839?trw=no

Opinion | Medicaid Work Requirements Will Devastate People With Invisible Disabilities

ME/CFS and long COVID patients must qualify as 'medically frail'

www.medpagetoday.com

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Lauren MacIvor Thompson @lmacthompson1.bsky.social · 4d

I am writing this because it has swiftly become crystal clear to me that many people have no idea what is happening or how this works. Here is a thread for non-academics to put into context what just happened to Dr. Mark Bray, a fellow historian.

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Dorit Reiss @doritreiss.bsky.social · 4d

Unknown layoffs are happening at HHS. Unknown in terms of who and which agencies.

www.statnews.com/2025/10/10/h...

1/2

HHS employees to be fired as White House enacts mass terminations it blames on shutdown

Federal health employees are being fired as the White House makes good on a promise to terminate federal employees en masse because of the shutdown.

www.statnews.com

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U.S. Press Freedom Tracker @pressfreedomtracker.us · 4d

Freelance reporter @leighgiangreco.bsky.social was on assignment for @blockclubchi.bsky.social, covering Sept. 19 protests outside the ICE facility in Broadview, IL, when federal officers shot her with pepper balls.

The newsroom has since filed suit and won a temporary restraining order.

Freelancer struck by projectiles at Illinois anti-deportation protest

Freelance reporter Leigh Giangreco was shot with multiple pepper balls by federal officers while covering protests outside a U.S. Immigration …

pressfreedomtracker.us

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Jacqueline Antonovich @jackiantonovich.bsky.social · 5d

There is a GoFundMe for Mark Bray and his family. I've confirmed with a friend who knows them that this is legit. Please donate if you can.

"Help us leave safely" on FreeFunder

Click here to support "Help us leave safely" by Dara on FreeFunder!

www.freefunder.com

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Oliver Darcy @oliverdarcy.bsky.social · 4d

News: Bari Weiss just sent a memo to staffers at CBS News asking them to produce a memo explaining "how you spend your working hours—and ideally, what you've made (or are making) that you're most proud of."

One CBS News staffer puts it like this to me: "We just got Elon Musked."

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The Sick Times @thesicktimes.org · 4d

A group of 53 people with #LongCOVID joined a clinical trial for Vyvgart. For many of them, the treatment changed everything.

Then, without warning, Argenx canceled the trial.

Most of them have now relapsed.

They're calling on the NIH and HHS to study the drug: bit.ly/48l1Qp5

A photo Nicole Barrick, a woman in a pink KN95 mask, receives an infusion of Vyvgart. The text reads, "The Sick Times. Vyvgart brought us back to life, but the Long COVID trial was canceled. We are calling on the NIH and HHS to study the drug. By Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White."

"For those living with Long COVID, every ounce of hope is hard-won. This isn’t just about physical symptoms. It’s about the emotional toll of being given hope — and then having it taken away." - Vyvgart clinical trial participants
Clare Banaszewski, Nicole Barrick, Mike Bilik, Addie Davis, Mia Delli Gatti, Ellie Hayes, Roman White

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