Emily Johnson
@emilyrj.bsky.social
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 ♿️🏳️🌈📚
Pinned
Emily Johnson
@emilyrj.bsky.social
· Jul 3
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...
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
❤️ 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 😢
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 😢
Reposted by Emily Johnson
Our clinician's roundtable with @jackamatica.bsky.social and Nick Boyd-Gibbins from @amaticahealth.bsky.social about their 31 Marker and RNA Sequencing Tests for #MECFS #pwME and #LongCovid is now posted to our YouTube channel: www.youtube.com/watch?v=cfjO...
31 Marker & RNA Sequencing Tests for M.E. & LC with Amatica's Nick Boyd-Gibbins & Jack Hadfield
YouTube video by Renegade Research
www.youtube.com
November 25, 2025 at 7:42 PM
Our clinician's roundtable with @jackamatica.bsky.social and Nick Boyd-Gibbins from @amaticahealth.bsky.social about their 31 Marker and RNA Sequencing Tests for #MECFS #pwME and #LongCovid is now posted to our YouTube channel: www.youtube.com/watch?v=cfjO...
Reposted by Emily Johnson
Some good discounts here for #pwME #LongCovid
The rest of this thread will contain our affiliate and/or discount information by vendor.
You can also go to our website to see or share them all at once. www.renegade-research.org/discounts-an...
You can also go to our website to see or share them all at once. www.renegade-research.org/discounts-an...
Discounts & Affiliate Links | Renegade Research
Tests and supplements available at a discount using either a code or special link. Affiliate links to help us fund our mission.
www.renegade-research.org
November 25, 2025 at 8:18 PM
Some good discounts here for #pwME #LongCovid
Reposted by Emily Johnson
Please help us fundraise without additional cost to you!
#MECFS and #LongCovid organizations are underfunded, especially patient-led nonprofits. That’s why Renegade Research has a mixed funding model including affiliate links and discount codes.
With no extra cost to you, potential savings, and raising funds for our projects, it's a win-win! 🧵
With no extra cost to you, potential savings, and raising funds for our projects, it's a win-win! 🧵
November 25, 2025 at 8:20 PM
Please help us fundraise without additional cost to you!
Reposted by Emily Johnson
#MECFS and #LongCovid organizations are underfunded, especially patient-led nonprofits. That’s why Renegade Research has a mixed funding model including affiliate links and discount codes.
With no extra cost to you, potential savings, and raising funds for our projects, it's a win-win! 🧵
With no extra cost to you, potential savings, and raising funds for our projects, it's a win-win! 🧵
November 25, 2025 at 8:02 PM
#MECFS and #LongCovid organizations are underfunded, especially patient-led nonprofits. That’s why Renegade Research has a mixed funding model including affiliate links and discount codes.
With no extra cost to you, potential savings, and raising funds for our projects, it's a win-win! 🧵
With no extra cost to you, potential savings, and raising funds for our projects, it's a win-win! 🧵
Reposted by Emily Johnson
This is way worse than "deeply embarrassing." The science behind vaccines is sound. Especially when it comes to measles. There is no link to autism. The benefits FAR outweigh the risks. We have absolutely no good reason for this to be happening. Children are dying.
"Experts have called the possibility of losing elimination status for measles 'deeply embarrassing' for a wealthy country with the medical resources of the United States..."
www.nytimes.com/2025/11/17/h...
www.nytimes.com/2025/11/17/h...
C.D.C. Links Measles Outbreaks in Multiple States for the First Time
www.nytimes.com
November 18, 2025 at 6:19 PM
This is way worse than "deeply embarrassing." The science behind vaccines is sound. Especially when it comes to measles. There is no link to autism. The benefits FAR outweigh the risks. We have absolutely no good reason for this to be happening. Children are dying.
Great article explaining why the poverty line created in 1963 has been a faulty economic tool to use since it was created www.yesigiveafig.com/p/part-1-my-...
Part 1: My Life Is a Lie
How a Broken Benchmark Quietly Broke America
www.yesigiveafig.com
November 25, 2025 at 12:59 AM
Great article explaining why the poverty line created in 1963 has been a faulty economic tool to use since it was created www.yesigiveafig.com/p/part-1-my-...
Reposted by Emily Johnson
they were "controversial" for murdering palestinians at their food distribution sites.
The Gaza Humanitarian Foundation, a controversial U.S.- and Israel-backed company that provided aid to Gaza, said Monday it would shutter operations.
US-backed aid company in Gaza shutters operations
The U.S.- and Israel-backed Gaza Humanitarian Foundation, set up to distribute aid to Gaza as an alternative to the United Nations but which Palestinians said endangered the lives of civilians as they tried to get food, has said it will shutter operations.
bit.ly
November 24, 2025 at 7:13 PM
they were "controversial" for murdering palestinians at their food distribution sites.
Reposted by Emily Johnson
But University of Georgia's Daniel Perez told us that another idea floated by officials was more likely to result in dangerous bird flu mutations
Kennedy talked about "the possibility of letting it run through the flock" and preserving birds that are immune
www.cbsnews.com/news/rfk-jr-...
Kennedy talked about "the possibility of letting it run through the flock" and preserving birds that are immune
www.cbsnews.com/news/rfk-jr-...
RFK Jr. warns vaccinating poultry for bird flu could backfire
Health and Human Services Secretary Robert F. Kennedy Jr. warned vaccines could turn "birds into mutant factories."
www.cbsnews.com
March 6, 2025 at 10:52 PM
But University of Georgia's Daniel Perez told us that another idea floated by officials was more likely to result in dangerous bird flu mutations
Kennedy talked about "the possibility of letting it run through the flock" and preserving birds that are immune
www.cbsnews.com/news/rfk-jr-...
Kennedy talked about "the possibility of letting it run through the flock" and preserving birds that are immune
www.cbsnews.com/news/rfk-jr-...
Reposted by Emily Johnson
Remembering an old post from a girl who was talkin w a guy on bumble or w/e and, when she said she did advocacy around infectious diseases, dude asked For or against the diseases?
I see now that Robert F Kennedy Jr is the reason why you gotta ask such questions. That's a pro disease man right there
I see now that Robert F Kennedy Jr is the reason why you gotta ask such questions. That's a pro disease man right there
But University of Georgia's Daniel Perez told us that another idea floated by officials was more likely to result in dangerous bird flu mutations
Kennedy talked about "the possibility of letting it run through the flock" and preserving birds that are immune
www.cbsnews.com/news/rfk-jr-...
Kennedy talked about "the possibility of letting it run through the flock" and preserving birds that are immune
www.cbsnews.com/news/rfk-jr-...
RFK Jr. warns vaccinating poultry for bird flu could backfire
Health and Human Services Secretary Robert F. Kennedy Jr. warned vaccines could turn "birds into mutant factories."
www.cbsnews.com
March 7, 2025 at 2:25 AM
Remembering an old post from a girl who was talkin w a guy on bumble or w/e and, when she said she did advocacy around infectious diseases, dude asked For or against the diseases?
I see now that Robert F Kennedy Jr is the reason why you gotta ask such questions. That's a pro disease man right there
I see now that Robert F Kennedy Jr is the reason why you gotta ask such questions. That's a pro disease man right there
Reposted by Emily Johnson
what's the relationship between algorithmic ableism and platform polarization?
In a virtual talk I'm giving later this month at Loyola U Chicago, I trace the sticky relationship between ableism and political polarization in the platform age.
thanks to @drgyopophd.bsky.social for the invite!
In a virtual talk I'm giving later this month at Loyola U Chicago, I trace the sticky relationship between ableism and political polarization in the platform age.
thanks to @drgyopophd.bsky.social for the invite!
November 7, 2025 at 3:17 PM
what's the relationship between algorithmic ableism and platform polarization?
In a virtual talk I'm giving later this month at Loyola U Chicago, I trace the sticky relationship between ableism and political polarization in the platform age.
thanks to @drgyopophd.bsky.social for the invite!
In a virtual talk I'm giving later this month at Loyola U Chicago, I trace the sticky relationship between ableism and political polarization in the platform age.
thanks to @drgyopophd.bsky.social for the invite!
Reposted by Emily Johnson
This is the first story I ever did that got more than a million views
November 19, 2025 at 5:16 PM
This is the first story I ever did that got more than a million views
I feel like I’ve been playing anatomy bingo for my entire life, I’m at least five blackout cards in but there are no prizes
Anyway please donate to my GoFundMe if you can so I can afford medical care Medicare, medicaud, financial aid doesn’t cover for all of these life-ruining things
Anyway please donate to my GoFundMe if you can so I can afford medical care Medicare, medicaud, financial aid doesn’t cover for all of these life-ruining things
Today a (kind, smart, great) neurologist did a deeper dive and said he wants to try to map veins in my head because he thinks they’re too small and it could be contributing to other problems
Who knew venous insufficiency could also happen in one’s head/must I have all of the things sigh
Who knew venous insufficiency could also happen in one’s head/must I have all of the things sigh
November 19, 2025 at 3:45 AM
I feel like I’ve been playing anatomy bingo for my entire life, I’m at least five blackout cards in but there are no prizes
Anyway please donate to my GoFundMe if you can so I can afford medical care Medicare, medicaud, financial aid doesn’t cover for all of these life-ruining things
Anyway please donate to my GoFundMe if you can so I can afford medical care Medicare, medicaud, financial aid doesn’t cover for all of these life-ruining things
Today a (kind, smart, great) neurologist did a deeper dive and said he wants to try to map veins in my head because he thinks they’re too small and it could be contributing to other problems
Who knew venous insufficiency could also happen in one’s head/must I have all of the things sigh
Who knew venous insufficiency could also happen in one’s head/must I have all of the things sigh
November 19, 2025 at 3:39 AM
Today a (kind, smart, great) neurologist did a deeper dive and said he wants to try to map veins in my head because he thinks they’re too small and it could be contributing to other problems
Who knew venous insufficiency could also happen in one’s head/must I have all of the things sigh
Who knew venous insufficiency could also happen in one’s head/must I have all of the things sigh
Reposted by Emily Johnson
This event with @jackamatica.bsky.social @amaticahealth.bsky.social is in 3 days! We'd love to see you there, register here: us06web.zoom.us/webinar/regi...
November 18, 2025 at 6:19 AM
This event with @jackamatica.bsky.social @amaticahealth.bsky.social is in 3 days! We'd love to see you there, register here: us06web.zoom.us/webinar/regi...
Reposted by Emily Johnson
Alice Wong was one of the most effective people challenging the Whiteness of disability communities and its many flaws, but who believed fiercely in us as a community, in disabled people as oracles.
Alice brought so much to so many of us, it’s hard to measure the kind of gratitude I have for that.
Alice brought so much to so many of us, it’s hard to measure the kind of gratitude I have for that.
November 15, 2025 at 1:34 PM
Alice Wong was one of the most effective people challenging the Whiteness of disability communities and its many flaws, but who believed fiercely in us as a community, in disabled people as oracles.
Alice brought so much to so many of us, it’s hard to measure the kind of gratitude I have for that.
Alice brought so much to so many of us, it’s hard to measure the kind of gratitude I have for that.
Reposted by Emily Johnson
This is a wonderful way to grieve: Alice worked tirelessly to raise awareness about why Palestine was a disability justice issue and to raise funds for Gaza.
One way I have found to mourn someone is to set up a monthly sustaining donation to a mutual aid effort they cared about. If you can join me in honoring Alice Wong, @sfdirewolf.bsky.social with a sustaining donation today, please do. Thank you Alice, and I will not let the bastards grind me down.
November 15, 2025 at 2:48 PM
This is a wonderful way to grieve: Alice worked tirelessly to raise awareness about why Palestine was a disability justice issue and to raise funds for Gaza.
Reposted by Emily Johnson
we closed this application yesterday. we got an unbelievable 18,588 applications totaling $4,157,600 in $100 and $250 requests.
we have sent $53,000 to 224 people and will continue to send more.
if you are able to donate, you can do so at ndsdj.org/snapdonate
thanks to EVERYONE who has donated!
we have sent $53,000 to 224 people and will continue to send more.
if you are able to donate, you can do so at ndsdj.org/snapdonate
thanks to EVERYONE who has donated!
We are offering one time payments to disabled folks in the South who will not receive their SNAP benefits this month. If you need help, please find more information and details at ndsdj.org/snaphelp.
If you’d like to donate to the fund, go to ndsdj.org/snapdonate
We take care of each other ❤️
If you’d like to donate to the fund, go to ndsdj.org/snapdonate
We take care of each other ❤️
October 30, 2025 at 10:54 AM
we closed this application yesterday. we got an unbelievable 18,588 applications totaling $4,157,600 in $100 and $250 requests.
we have sent $53,000 to 224 people and will continue to send more.
if you are able to donate, you can do so at ndsdj.org/snapdonate
thanks to EVERYONE who has donated!
we have sent $53,000 to 224 people and will continue to send more.
if you are able to donate, you can do so at ndsdj.org/snapdonate
thanks to EVERYONE who has donated!
Reposted by Emily Johnson
New — I wrote about the myriad ways journalism’s moral rot manifests, and how our crumbling institutions have created the conditions for it to fester:
Moral rot in elite journalism is killing the whole field
The Nuzzi/RFK Jr. mess and the revelation of Esptein's journo pals lay bare a profound moral absence at the heart of our free press.
www.thehandbasket.co
November 18, 2025 at 10:03 PM
New — I wrote about the myriad ways journalism’s moral rot manifests, and how our crumbling institutions have created the conditions for it to fester:
Reposted by Emily Johnson
Please help our friend @maedayj.bsky.social stay housed, especially during this difficult time!
Mae has been busy planning her brother's funeral while dealing with housing and food insecurity.
Please be here for her now!
If you can't help, please share!
💖🌸❤️🌺🍓
Mae has been busy planning her brother's funeral while dealing with housing and food insecurity.
Please be here for her now!
If you can't help, please share!
💖🌸❤️🌺🍓
I still haven’t been able to raise the remainder of what i need for r3nt
I’ve been so busy with funeral planning that I’ve barely had time to think about it
Please help if you can🙏🏽
$maelee21
V: @ Maelee-Johnson
PayPal.me/maeleeJ
ko-fi.com/maedaej
I’ve been so busy with funeral planning that I’ve barely had time to think about it
Please help if you can🙏🏽
$maelee21
V: @ Maelee-Johnson
PayPal.me/maeleeJ
ko-fi.com/maedaej
November 7, 2025 at 11:22 PM
Please help our friend @maedayj.bsky.social stay housed, especially during this difficult time!
Mae has been busy planning her brother's funeral while dealing with housing and food insecurity.
Please be here for her now!
If you can't help, please share!
💖🌸❤️🌺🍓
Mae has been busy planning her brother's funeral while dealing with housing and food insecurity.
Please be here for her now!
If you can't help, please share!
💖🌸❤️🌺🍓
Spent an hour with my PCP going over the many, tough ways things are Not Great For My Body which he confirmed and will relate to palliative
“Listen I’m just aiming for a holding pattern” and he laughed and said “All and so many things considered, you’re doing a great job”
“Listen I’m just aiming for a holding pattern” and he laughed and said “All and so many things considered, you’re doing a great job”
November 18, 2025 at 11:42 PM
Spent an hour with my PCP going over the many, tough ways things are Not Great For My Body which he confirmed and will relate to palliative
“Listen I’m just aiming for a holding pattern” and he laughed and said “All and so many things considered, you’re doing a great job”
“Listen I’m just aiming for a holding pattern” and he laughed and said “All and so many things considered, you’re doing a great job”
I hope people realize some disabled people are forced to live in places where we have no to little control over possessions
How that influences who has the privilege to use infection mitigations, be in communities, go to school/work
How being public about it is a privilege too
How that influences who has the privilege to use infection mitigations, be in communities, go to school/work
How being public about it is a privilege too
November 18, 2025 at 6:24 PM
I hope people realize some disabled people are forced to live in places where we have no to little control over possessions
How that influences who has the privilege to use infection mitigations, be in communities, go to school/work
How being public about it is a privilege too
How that influences who has the privilege to use infection mitigations, be in communities, go to school/work
How being public about it is a privilege too
Reposted by Emily Johnson
Had a recruiter tell me yesterday that remote jobs in my field were dwindling and trying to get me to concede on RTO and I was disgusted that I had to share personal medical info to get her to back off. LISTEN TO US.
I hope nondisabled people are listening to disabled people as we’ve discussed the mass hemorrhaging of accessible jobs, layoffs over accommodations and spike of tools used to screen out disabled employees in the past few years (which ends survival possibilities for us)
November 18, 2025 at 3:46 PM
Had a recruiter tell me yesterday that remote jobs in my field were dwindling and trying to get me to concede on RTO and I was disgusted that I had to share personal medical info to get her to back off. LISTEN TO US.
Reposted by Emily Johnson
New from me this morning, a deep dive on Elon Musk's Grokipedia-- the forthrightness of the white nationalist and eugenic advocacy in many entries surprised me and the experts I spoke to www.theguardian.com/technology/2...
White nationalist talking points and racial pseudoscience: welcome to Elon Musk’s Grokipedia
World’s richest person wanted to ‘purge’ propaganda from Wikipedia, so he created a compendium of racist disinformation
www.theguardian.com
November 17, 2025 at 12:34 PM
New from me this morning, a deep dive on Elon Musk's Grokipedia-- the forthrightness of the white nationalist and eugenic advocacy in many entries surprised me and the experts I spoke to www.theguardian.com/technology/2...
Reposted by Emily Johnson
all of this thread.
my BFF, the one i helped through a hellish MCAS flare and then gallbladder hell earlier this year, is also unable to mask at all times in shared air like he used to be able to.
which is why i and OP ask you all to mask up in shared air, to make it safer for those who can’t.
my BFF, the one i helped through a hellish MCAS flare and then gallbladder hell earlier this year, is also unable to mask at all times in shared air like he used to be able to.
which is why i and OP ask you all to mask up in shared air, to make it safer for those who can’t.
I’ve put off being very public about this, but due to a neuromuscular disorder worsening, a pulmonary function issue, severe (but mostly managed) MCAS, vocal cord dysfunction and other issues: it’s been harder for me to wear a mask, at times I have to take breaks or stop 🧵
November 18, 2025 at 2:18 AM
all of this thread.
my BFF, the one i helped through a hellish MCAS flare and then gallbladder hell earlier this year, is also unable to mask at all times in shared air like he used to be able to.
which is why i and OP ask you all to mask up in shared air, to make it safer for those who can’t.
my BFF, the one i helped through a hellish MCAS flare and then gallbladder hell earlier this year, is also unable to mask at all times in shared air like he used to be able to.
which is why i and OP ask you all to mask up in shared air, to make it safer for those who can’t.