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emilyrj.bsky.social
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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emilyrj.bsky.social
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 😢
emilyrj.bsky.social
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
14 18
Reposted by Emily Johnson
ericumansky.bsky.social
Eric Umansky @ericumansky.bsky.social · 1h
BREAKING from PP

We found immigration agents have held more than 170 *citizens*

The govt doesn't track citizens held. So we did. We tallied:

Nearly 20 kids, two w/ cancer

More than 20 citizens held for day or more, incommunicado

www.propublica.org/article/immi...

by @nicolefoy.bsky.social
More Than 170 U.S. Citizens Have Been Held by Immigration Agents. They’ve Been Kicked, Dragged and Detained for Days.
The government does not track how often immigration agents grab citizens. So ProPublica did. Our tally — almost certainly incomplete — includes people who were held for days without a lawyer. And near...
www.propublica.org
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newsjennifer.bsky.social
@NewsJennifer (Jennifer Schulze) @newsjennifer.bsky.social · 41m
This is a devastating account of what ICE is doing to our friends, neighbors and fellow US citizens. Incredible work by @propublica.org.

www.propublica.org/article/immi...
But that is far from the reality many citizens have experienced. Americans have been dragged, tackled, beaten, tased and shot by immigration agents. They’ve had their necks kneeled on. They’ve been held outside in the rain while in their underwear. At least three citizens were pregnant when agents detained them. One of those women had already had the door of her home blown off while Department of Homeland Security Secretary Kristi Noem watched.
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Reposted by Emily Johnson
cortjohnson.bsky.social
Cort Johnson @cortjohnson.bsky.social · Jun 1
The GLP1 Agonists: An Exciting New Class of Drugs For ME/CFS, FM, and Long COVID? #MECFS #FM #longcovid www.healthrising.org/blog/2025/05...
The GLP1 Agonists: An Exciting New Class of Drugs For ME/CFS, FM and Long COVID? - Health Rising
GLP-1 agonists like Ozempic could be surprisingly helpful in diseases like chronic fatigue syndrome, fibromyalgia and long COVID.
www.healthrising.org
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Reposted by Emily Johnson
physiosforme.bsky.social
Physios For ME @physiosforme.bsky.social · 1d
We've had another study published 🥳

"Pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a feasibility study"

Open access link here. Summary below (1)
www.tandfonline.com/doi/full/10....
Taylor & Francis Online: Peer-reviewed Journals
Search and explore the millions of quality, peer-reviewed journal articles published under the Taylor & Francis, Routledge and Dove Medical Press imprints.
tandfonline.com
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Reposted by Emily Johnson
ellybrosius.bsky.social
Elly Brosius, MS @ellybrosius.bsky.social · 1h
Micro-dosing GLP-1/GIP RA Tx in ME/CFS & Long Covid with
@kaufmanmd.bsky.social @ruhoy.bsky.social &
Tania Dempsey, MD.

2 pm ET USA, Friday, Oct 17, 2025

A Clinician's Roundtable by @renegaderesearch.bsky.social

Recording posted to YouTube soon.

us06web.zoom.us/webinar/regi...
#MedSky
Welcome! You are invited to join a webinar: Clinician's Roundtable: Microdosing GLP-1/GIP Receptor Agonists in MECFS and Long Covid. After registering, you will receive a confirmation email about join...
Presenters Ilene Ruhoy, MD, PhD, David Kaufman, MD Tania Dempsey, MD Drs Ruhoy, Dempsey and Kauffman will be discussing how they are using this medication off label in their respective practices an...
us06web.zoom.us
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Reposted by Emily Johnson
h-lev.bsky.social
Hannah Levintova @h-lev.bsky.social · 1d
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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Reposted by Emily Johnson
chicago.suntimes.com
Chicago Sun-Times @chicago.suntimes.com · 1d
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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Reposted by Emily Johnson
paris.nyc
paris martineau @paris.nyc · 2d
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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Reposted by Emily Johnson
agreenberg.bsky.social
Andy Greenberg @agreenberg.bsky.social · 2d
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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Reposted by Emily Johnson
couts.bsky.social
Andrew Couts @couts.bsky.social · 2d
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
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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emilyrj.bsky.social
Emily Johnson @emilyrj.bsky.social · 3d
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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Reposted by Emily Johnson
spavel.bsky.social
Pavel @spavel.bsky.social · 4d
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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spavel.bsky.social
Pavel @spavel.bsky.social · 4d
"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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oisinmcgann.bsky.social
Oisín McGann @oisinmcgann.bsky.social · 4d
That’s not how consent works.
spavel.bsky.social
Pavel @spavel.bsky.social · 4d
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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Reposted by Emily Johnson
juliametraux.bsky.social
Julia Métraux @juliametraux.bsky.social · 4d
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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Reposted by Emily Johnson
jysexton.bsky.social
Jared Yates Sexton @jysexton.bsky.social · 4d
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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Reposted by Emily Johnson
gregsargent.bsky.social
Greg Sargent @gregsargent.bsky.social · 5d
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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jacobtlevy.bsky.social
Jacob T. Levy @jacobtlevy.bsky.social · 4d
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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jamellebouie.net
jamelle @jamellebouie.net · 4d
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
thomaszimmer.bsky.social
Thomas Zimmer @thomaszimmer.bsky.social · 4d
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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emilyrj.bsky.social
Emily Johnson @emilyrj.bsky.social · 4d
“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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Reposted by Emily Johnson
walkerbragman.bsky.social
Walker Bragman @walkerbragman.bsky.social · 5d
Letting it rip didn’t work
emilyrj.bsky.social
Emily Johnson @emilyrj.bsky.social · 5d
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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Reposted by Emily Johnson
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 14d
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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Reposted by Emily Johnson
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 13d
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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Reposted by Emily Johnson
meactnet.bsky.social
#MEAction Network @meactnet.bsky.social · 7d
@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!👇
medpagetoday.com
MedPage Today @medpagetoday.com · 7d
"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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Reposted by Emily Johnson
lmacthompson1.bsky.social
Lauren MacIvor Thompson @lmacthompson1.bsky.social · 6d
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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