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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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Reposted by Emily Johnson

Walker Bragman @walkerbragman.bsky.social · 12h

Letting it rip didn’t work

Emily Johnson @emilyrj.bsky.social · 14h

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 · 8d

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 · 8d

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 · 1d

@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 · 2d

"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 · 15h

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 · 14h

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

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

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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 · 14h

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 · 1d

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 · 18h

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 · 14h

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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Emily Johnson @emilyrj.bsky.social · 14h

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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Emily Johnson @emilyrj.bsky.social · 16h

“The global pooled long COVID prevalence was 36%” with South Americans with highest prevalence

That’s *2.96 billion* people

And governments mostly stopped prevention via required masks, testing and better air quality plus massively cut Long Covid research and care academic.oup.com/ofid/article...

Validate User

academic.oup.com

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Kevin M. Kruse @kevinmkruse.bsky.social · 1d

The Rutgers TPUSA chapter — whose characterization of a historian there as a “outspoken, well-known antifa member” led to death threats and moving his family to Europe — think *other* people are being “blatantly defamatory.”

Not them, though. They’re doing politics the right way.

Rutgers TPUSA officers slam petition to shut down chapter, ‘Blatantly defamatory’

Alexander Di Filippo accuses Turning Point USA of inciting violence against Antifa handbook author Mark Bray.

www.foxnews.com

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Eric Reinhart @eric-reinhart.com · 2d

It seems most Americans still think that what’s happened before and elsewhere couldn’t possibly happen here now. But it can, and it is. Fascism is here. State terrorism against us is going to get more and more violent. And it is not likely to be stopped by waiting for a chance to vote against it.

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Parker Molloy @parkermolloy.com · 1d

Oh www.cnn.com/2025/10/09/p...

CNN headline: Former GOP election official buys Dominion Voting
Systems, says he'll push for paper ballots

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Mike Stabile @mikestabile.bsky.social · 1d

Buried in Michigan's antiporn bill is a provision to effectively outlaw "circumvention tools," such as VPNs.

Mark my words: legislators will increasingly leverage porn panic to restrict or ban VPNs, and to limit internet privacy far beyond adult sites.

Experts raise privacy concerns over Michigan bill targeting pornography and VPNs

Rep. Josh Schriver, the bill’s sponsor, says the law is designed to target only producers and distributors of pornography, not everyday internet users.

www.wilx.com

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Emily Johnson @emilyrj.bsky.social · 1d

A new McCarthyism era targeting experts in antifascism only empowers state fascism more

www.theguardian.com/us-news/2025...

US anti-fascism expert blocked from flying to Spain at airport

Rutgers University professor who published book on antifa was informed at boarding gate that his trip was cancelled

www.theguardian.com

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David Tuller @davetuller1.bsky.social · 14d

This piece for @thesicktimes.org about people with Long COVID receiving diagnoses of funcitonal neurological disorder...
thesicktimes.org/2025/09/26/l...

Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you. - The Sick Times

Some people with Long COVID are receiving potentially unhelpful diagnoses of functional neurological disorder (FND), a condition in which people experience neurological symptoms that cannot be attribu...

thesicktimes.org

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The Sick Times @thesicktimes.org · 14d

#LongCOVID is not functional neurological disorder (FND), but some patients are getting diagnosed with it.

Here’s @davetuller1.bsky.social on what to do if it happens to you: bit.ly/4mxAyiB

Photo of an art piece: a white object, shaped like an egg, with painted representations of the virus SARS-CoV-2 across its surface. The text reads, "The Sick Times. Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you. By David Tuller."

What people with Long COVID should do if they receive an FND diagnosis:

Ask about the basis for the diagnosis. A clinician may render an FND diagnosis when medical tests are negative. That means people with Long COVID and other conditions that lack validated biomarkers might be particularly vulnerable to misdiagnosis. However, FND is not supposed to be a diagnosis of exclusion — that is, a diagnosis given solely because nothing else has been found.

Don’t automatically accept the diagnosis as final. “Don’t be afraid to question it if it doesn’t feel like the diagnosis fits your symptoms,” said Hargrave. Davenport echoed that advice. “Don’t take it for a definitive answer,” he said. “It’s okay to seek another opinion.”

What people with Long COVID should do if they receive an FND diagnosis

Keep a full account of your medical care, said Joffe, the Australian expert. “Carefully document all neurological interactions,” he said. “Keep copies of the letters written and all the results. That’s crucial. Not infrequently, I find that something has been missed or overlooked in my patients. Having the original letters and studies is very illuminating.”

Be aware that having an existing FND diagnosis in medical charts might influence the judgment of subsequent clinicians, and take steps to address this issue. David Putrino recommends working with your primary care provider “to have that diagnosis removed from your medical records.”

"Don’t be afraid to question it if it doesn’t feel like the diagnosis fits your symptoms. Don’t take it for a definitive answer. It’s okay to seek another opinion." - Todd Davenport, Professor of physical therapy at the University of the Pacific in Stockton, California

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C.H. Romatowski @chromatowski.bsky.social · 14d

Really important topic.

It’s a great day to donate to @thesicktimes.org. Nowhere else is gathering this critical information for people who have Long Covid—or anyone who might get it, which a new NIH incidence study says is at least 1 in 20 people who get Covid.

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Morgan Leigh Davies @mldavies.bsky.social · 10d

Very proud to have reviewed Patricia Lockwood's new novel, WILL THERE EVER BE ANOTHER YOU, for @thesicktimes.org.

This is an important book, the first to take the experience of Long COVID seriously. thesicktimes.org/2025/09/30/p...

Patricia Lockwood explores the depths of Long COVID in the new novel “Will There Ever Be Another You” - The Sick Times

In her new novel Will There Ever Be Another You, which chronicles her experience of the COVID-19 pandemic, literary icon Patricia Lockwood writes, “‘Please don’t write about it,’ people were already b...

thesicktimes.org

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The Sick Times @thesicktimes.org · 8d

Literary icon Patricia Lockwood's new novel, Will There Ever Be Another You, is written from inside the mind of someone suffering from neurological symptoms of #LongCOVID.

Read more from @mldavies.bsky.social: bit.ly/3Kt2TcJ

References to COVID-19 and especially to Long COVID, in life and in art, remind people that the pandemic never really ended. But for people like Lockwood and for me, who were both debilitated by Long COVID, forgetting is impossible.

Morgan Leigh Davies

Patricia Lockwood explores the depths of Long COVID in the new novel “Will There Ever Be Another You”

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Emily Johnson @emilyrj.bsky.social · 8d

Hi it’s me also 🙃

Heather Hogan @heatherhogan.bsky.social · 9d

My chronic illness curse is I overcompensate because I feel guilty for not “doing enough” which makes people think I’m *way* more capable of doing stuff than I actually am, so they ask for more, so I feel more guilty, so I overcompensate more. It’s a real mystery why I keep crashing!

Reposted by Emily Johnson

Kristen Parisi @kris10p.bsky.social · 8d

This story doesn't have a single mention of disabled people. That in itself is disqualifying. There is no urban planning without the disabled experience, & it saddens me that the bike culture-obsessed often disregard concerns from disabled people instead of explaining potential solutions.

Brent Toderian @brenttoderian.bsky.social · 9d

“The e-bike market is skyrocketing — and, according to some studies, outpacing electric cars…The question now is: Do officials double down on deadly car-centric urban design, or do they rethink cities to encourage people to ditch four wheels for two?”

Via @grist.org grist.org/transportati...

E-bikes could cut carbon, congestion, and costs — if cities take them seriously

E-bike sales are booming, providing a clean form of transportation that also improves public health. Yet cities remain committed to cars.

grist.org

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Ashley C. Ford @smashfizzle.bsky.social · 8d

I say it all the time, but imma say it again: a lot of very book smart people lack the emotional education and communication skills that would allow them to generate the courage they want to embody in their work. They are incurious about their own emotional lives, and consequently, those of others.

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