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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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David Tuller @davetuller1.bsky.social · 12d

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 · 12d

#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 · 12d

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 · 8d

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 · 6d

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 · 6d

Hi it’s me also 🙃

Heather Hogan @heatherhogan.bsky.social · 7d

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 · 6d

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 · 7d

“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 · 6d

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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Ashley C. Ford @smashfizzle.bsky.social · 6d

As long as the loudest folks on the left insist tone-policing, compromise on human rights, and acquiescence are our only options for a unified country, they will continue to lose the faith of the marginalized. And even when they win, they’ll just be waiting to lose the same way again.

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Preorder Read This When Things Fall Apart @mskellymhayes.bsky.social · 6d

"Jones, 27, is among the residents left at 7500 S. South Shore Drive who are trying to piece together what remains after an early morning, high-powered federal immigration raid led to the arrests of dozens of their neighbors at their South Shore apartment building."

Massive immigration raid on Chicago apartment building leaves residents reeling: 'I feel defeated'

The Department of Homeland Security said federal agents with Border Patrol, the FBI and the Bureau of Alcohol, Tobacco, Firearms and Explosives arrested 37 people in the raid.

chicago.suntimes.com

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Drew Harwell @drewharwell.com · 9d

"In an interview, one woman who identified herself as the wife of one of the dead men said that her husband was a fisherman with four children who left one day for work and never came back."

www.nytimes.com/2025/09/28/w...

Fear and Hope in Venezuela as U.S. Warships Lurk

www.nytimes.com

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𝕍∃, Cyber closed shell syndrome relief fund coordinator @vortexegg.com · 10d

The thing about medbeds as a QAnon conspiracy theory is that the exact same *idea* of magical immortality-granting technology (though in different formats) is a dominant myth in Silicon Valley technofuturism and also taken seriously by many powerful elites in that space

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Silvia Secchi @profsecchi.bsky.social · 13d

Here is a pretty powerful reason why farming every last acre of the corn belt is not a good idea btw
Also why it is so important to protect places like the Dakotas

Birder K @birderk.bsky.social · 13d

ONE POINT TWO BILLION!

BirdCast map showing heavy migration at 10:40pm EDT on September 25, 2025. 1 billion, 208 million birds are flying south.

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Evan Bernick, a finite mode with a smol hooman and a lorg floof @evanbernick.bsky.social · 13d

"And then what happened?"

(Standing Bear wanted to stay on the Omaha Reservation but could not, since the Dundy's opinion allowed for military removal from reservations. Also, his speaking tour was coopted for anti-Tribal cultural destruction, and his ancestral land was ultimately allotted.)

Akhil Amar, Born Equal:In the courtroom, Standing Bear used his own body—his corpus, so to speak—to make his case to the trial judge, Elmer Scipio Dundy. Rising slowly and stretching out his right hand, the chief told the judge, “That hand is not the color of yours, but if I pierce it, I shall feel pain. If you pierce your hand, you also feel pain. The blood that will flow from mine will be of the same color as yours. I am a man. The same God made us both.”30 Visibly moved in a case that he described in the moment as appealing to his “sympathy” more strongly than any other lawsuit in his fifteen years on the bench, Judge Dundy released Standing Bear from custody and declared that the former detainee was free to go where he wished. A tribal Indian, Dundy came close to saying (but did not say squarely), had a right to become an ordinary citizen, equal to all other citizens.31 Between 1879 and 1883, Standing Bear used his freedom to travel and lecture across the eastern states in a grand Douglass-style speaking tour sponsored by Wendell Phillips. Two gifted mixed-race translators—Susette La Flesche (also known as Bright Eyes to her indigenous relatives) and her half-brother Francis La Flesche—aided Standing Bear in his admirable efforts to converse with his fellow Americans.

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Emily Johnson @emilyrj.bsky.social · 13d

So true, the last time I had one I was in so much very severe pain, I asked for deeper pressure and it was quite painful, when I left only maybe 20% of very severe pain was alleviated, but it meant I could do a thing I needed to do, so it was worth it

Reposted by Emily Johnson

ProPublica @propublica.org · 16d

NEW: Psychiatric hospitals — increasingly owned by for-profit corporations — are illegally turning away patients during crises.

Yet only a handful face penalties, with fines that are trivial, a ProPublica investigation found.

By @emcahan.bsky.social

For-Profit Corporations Are Buying Up More Psychiatric Hospitals. Some Flout Federal Law With Scarce Repercussions.

Psychiatric hospitals — increasingly owned by for-profit corporations — are illegally turning away patients during crises. Yet only a handful face penalties, with fines that are trivial, a ProPublica ...

www.propublica.org

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Nicole Chung @nicolechung.bsky.social · 15d

the most important thing to remember when you see eugenicists who don’t believe that autistic people should exist rambling about “the autism epidemic” is not that they’re wrong about the “cause” (although they are absolutely wrong about it); it’s that they are eugenicists

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Julia Métraux @juliametraux.bsky.social · 14d

File this under, this is actually a good thing you should try and cure, not autism. www.bbc.com/news/article...

Huntington's disease successfully treated for first time

One of the most devastating diseases finally has a treatment that can slow its progression and transform lives, tearful doctors tell BBC.

www.bbc.com

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Julia Métraux @juliametraux.bsky.social · 14d

If you're a disabled person in Iowa that would like to chat about your thoughts on Josh Turek's campaign, please be in touch at [email protected] for a @motherjones.com piece. Reposts appreciated.

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Julia Métraux @juliametraux.bsky.social · 15d

“The long history of trying to ‘cure’ or eliminate autism has been a history of terrible abuse and dangerous sham treatments."

I spoke to @autisticadvocacy.org's Greg Robinson and @drstevenkapp.bsky.social about the awful autism presser yesterday. www.motherjones.com/politics/202...

Disgust, horror, and "elimination": Trump and RFK Jr.'s eugenicist autism conference

The most striking omission from Monday's White House pageant: autistic people.

www.motherjones.com

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Julia Métraux @juliametraux.bsky.social · 14d

And during all of this, we have fewer disability reporters at national publications than when we started the year.

It's ME(Jaime) @exceedhergrasp1.bsky.social · 15d

Our current admin hates disabled people 🌈
www.afge.org/article/cdc-...

CDC Removes Disability as Reasonable Accommodation for Remote Work, Backtracks After Union Pressure

Leadership at the Centers for Disease Control and Prevention had said employees with disabilities would no longer be approved for telework or remote work as a reasonable accommodation – a stunning vio...

www.afge.org

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Thinking Person's Guide to Autism @thinkingautism.com · 14d

“Autistic ppl are a natural part of the human experience & society needs to affirm the value of ppl—even with significant disabilities. I don’t think eugenics is ethical or warranted in science or research.” @drstevenkapp.bsky.social to @juliametraux.bsky.social:
www.motherjones.com/politics/202...

Disgust, horror, and "elimination": Trump and RFK Jr.'s eugenicist autism conference

The most striking omission from Monday's White House pageant: autistic people.

www.motherjones.com

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Project LETS @projectlets.bsky.social · 13d

‼️ URGENT‼️ request for community support!

A Black, Disabled Comrade in NYC is facing an immediate threat of homelessness. $1200 is needed TODAY to secure their housing and give them room to breathe.

Venmo & Cashapp: strawb3rrym00n Use the purple heart emoji (💜) on the note.

Please share & donate!!

Flyer with text overlaid on a notebook page. Up top highlighted "URGENT" with "request for community support!" Underneath, black text: "A Black, Disabled Comrade in NYC is facing an immediate threat of homelessness. The constant stress of housing instability is taking a heavy toll on top of autistic burnout, survivorhood, and deep grief. They are doing everything they can to build a stable, self-determined life, but no one can do it alone. Let's wrap them in community care." Highlighted in yellow: "$1200 is needed TODAY to secure their housing and give them room to breathe." On the bottom right: "Venmo & Cashapp: strawb3rrym00n Use the purple heart emoji (💜) on the note."

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Renegade Research @renegaderesearch.bsky.social · Jul 22

Announcement!!

1. Clinics are shutting down, but patients w/ MECFS & Long Covid need to regain function. Resources are decreasing, while the need grows!

We are thrilled to announce the launch of a full-service coaching and consulting program tailored for patients with ME/LC

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Jane Shi | 皮爬高 echolalia echolalia is out now @pipagaopoetry.bsky.social · Aug 25

disabilityvisibilityproject.com/2025/08/24/i...

Check out my interview with Moaz Mansour of Gaza Online on the Disability Visibility Project blog! @sfdirewolf.bsky.social @thellpsx.bsky.social

Interview with Moaz Mansour of Gaza Online

DIY meets Infrastructure: A conversation with Moaz Mansour of Gaza Online Jane Shi On June 12th, 2025, Israel cut off the main fiber route in Gaza, destroying basic Internet infrastructure a…

disabilityvisibilityproject.com

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