Emily Johnson
@emilyrj.bsky.social
News/book edits, marketing, linguistics, research. #EDS Iowa admin. #Dysautonomia Iowa, #MastCell & http://Disabled.Social mod. @RenegadeResearch.bsky.social volunteer. Patient Advocate. #SevereME Same pic, a bit different handles on X, Substack. #Iowa ♿️🏳️🌈📚
A pre-print that I worked on w/ other members of @renegaderesearch.bsky.social formalizing the mechanical basis hypothesis of ME/CFS has been shortlisted for a "Popular preprint of the decade" award. If you feel so moved, a vote for us would mean a lot. www.preprints.org/activity/awa...
preprints.org
Watch our Aug. 21 Research Roundtable "Vagus Nerve Stimulation Informal Tracking Project for ME/CFS & Long Covid Research" here: www.youtube.com/watch?v=_ku1... Thanks to our wonderful panelists and attendees for insightful questions, experiences and info! #LongCovid #MECFS #pwME #VagusNerve
Vagus Nerve Stimulation Informal Tracking Project for ME/CFS and Long Covid Research Roundtable
YouTube video by Renegade Research
youtube.com
Sign up for our Nov. 10 webinar on the Renegade Research SIGNAL study. We’ll discuss how people with #MECFS and #LongCovid can join and borrow therapeutic devices for home use at no cost & contribute data to the BIC unhide® platform for research. Register: https://ow.ly/LGx250ZIvx7
Watch our Aug. 21 Research Roundtable "Vagus Nerve Stimulation Informal Tracking Project for ME/CFS & Long Covid Research" here: www.youtube.com/watch?v=_ku1... Thanks to our wonderful panelists and attendees for insightful questions, experiences and info! #LongCovid #MECFS #pwME #VagusNerve
Vagus Nerve Stimulation Informal Tracking Project for ME/CFS and Long Covid Research Roundtable
YouTube video by Renegade Research
youtube.com
Renegade Research@renegaderesearch.bsky.social · 3w agoWe're excited to share one of our project's results in this upcoming Research Roundtable: "Vagus Nerve Stimulation Informal Tracking Project for ME/CFS and Long Covid" Friday August 21, 2026 at 11 am PT US, 2 pm ET US and 7 pm UK Register: us06web.zoom.us/webinar/regi... 1/3 #LongCovid #MECFS
And it’s going to be on streaming soon after so disabled people can actually see it (since movie theaters are not actually accessible)
Rob Delaney@robdelaney.bsky.social · 4d agoVery grateful & very proud to be a part of 𝐁𝐄𝐈𝐍𝐆 𝐇𝐄𝐔𝐌𝐀𝐍𝐍, Siân Heder’s new film about Judy Heumann & her fellow disability activists. Select cinemas Nov 6.
Can you please be specific about who you are disciplining (is it commenters or quote posters?), how you determine a dogpile (is there a specific number of replies or quotes that constitutes it?), how many “strikes” it accrues?, and how you are preventing targeted reporting?
Bluesky Safety@safety.bsky.app · 4d agoDogpiling or harassing users is unacceptable. We have taken recent action against accounts for this behavior, and we will be increasing our efforts, consistent with our Community Guidelines.
"I’ve seen countless specialists for Long COVID and my seizures. While a few have helped guide my care, most have gaslit me...I feel like I have to be “pleasant” just to be taken seriously." A new essay by Kelly Sealey, the latest in our #ColorOfLongCOVID series. thesicktimes.org/2026/08/28/w...
“We’re going to stop the gaslighting right now”: How I’m fighting back as a Black woman with Long COVID - The Sick Times
Despite prior experience working in public health, I’ve faced challenges getting care for Long COVID and chronic seizures.
thesicktimes.org
Check out the latest from @juliametraux.bsky.social of @motherjones.com. "Emily Lim Rogers looks at the labor it takes simply to exist while sick in her new book Sick Work: Exhaustion, Labor, and Invisible Illness, through the lens of ME/CFS. We spoke about the history of the condition..."
Mother Jones@motherjones.com · 5d ago“Fatigue is this term that’s so banal and non-exceptional. We accept it as completely mundane and something that everyone should be: fatigued.”
I really feel like it should be bigger news that fibreglass is in IV saline bags in the US. This isn’t a situation where you might get a little sick. Fibreglass going directly into your veins will kill you. IV saline is used for almost every medical procedure. This is unconscionable:
Baxter Issues Voluntary Nationwide Recall for Two Lots of 0.9% Sodium Chloride Injection Due to Potential Presence of Particulate Matter
FOR IMMEDIATE RELEASE – AUG. 25, 2026 – DEERFIELD, Ill., Baxter International Inc. (NYSE:BAX) is voluntarily recalling two lots of 0.9% Sodium Chloride Injection due to the potential presence of parti...
fda.gov
Major heads up to #dysautonomia patients including but not limited to #POTS, #OrthostaticIntolerance Baxter .9% sodium chloride IV bag recall due to glass in IV bags: www.fda.gov/safety/recal... FL, IL, IN, LA, MD, MO, NC, NJ, NV, OH, SC, TX, VA are states impacted
Baxter Issues Voluntary Nationwide Recall for Two Lots of 0.9% Sodium Chloride Injection Due to Potential Presence of Particulate Matter
FOR IMMEDIATE RELEASE – AUG. 25, 2026 – DEERFIELD, Ill., Baxter International Inc. (NYSE:BAX) is voluntarily recalling two lots of 0.9% Sodium Chloride Injection due to the potential presence of parti...
fda.gov
Starting soon! Today @ 11 am PT / 2 pm ET, Solve VP of Scientific Programs Dr. Jessica Maya joins Renegade Research for the webinar "Vagus Nerve Stimulation (VNS) Informal Tracking Project for #MECFS & Long Covid.” Register here: https://ow.ly/4YSg50ZyhnC
Last chance to register for our webinar, which begins in one hour! Hear from top clinicians, researchers and patients involved in Vagus Nerve Stimulation for #MECFS and #LongCovid:
Solve M.E.@solveme.bsky.social · 2w agoStarting soon! Today @ 11 am PT / 2 pm ET, Solve VP of Scientific Programs Dr. Jessica Maya joins Renegade Research for the webinar "Vagus Nerve Stimulation (VNS) Informal Tracking Project for #MECFS & Long Covid.” Register here: https://ow.ly/4YSg50ZyhnC
Don't forget to register for our Research Roundtable tomorrow! Registration link in the post below ⬇️
Renegade Research@renegaderesearch.bsky.social · 3w agoWe're excited to share one of our project's results in this upcoming Research Roundtable: "Vagus Nerve Stimulation Informal Tracking Project for ME/CFS and Long Covid" Friday August 21, 2026 at 11 am PT US, 2 pm ET US and 7 pm UK Register: us06web.zoom.us/webinar/regi... 1/3 #LongCovid #MECFS
popsicles I have in my freezer have been recalled for glass and as a leaser in the clinical trial industry, I can confirm that they are sending FDA inspectors out to inspect drug data who only have experience with beef. USA is a wild and unhinged fire burning down the homes of its own people
An ICE agent directed Emilio, a Venezuelan Deaf man, to get onto a bus. He asked for an interpreter and didn’t get one. When he saw a Mexican flag, he realized he was being deported to Mexico, sans passport. My latest for @motherjones.com. www.motherjones.com/politics/202...
How Trump’s deportation machine deprives Deaf people of their humanity
An extra layer of cruelty is added by limiting communication access for Deaf people.
motherjones.com
i think for the rest of the month of the #SealeyChallenge i will reshare our esims fund throughout since we are soon going to run out of funds! <3 bit.ly/eSimsRUs
Crips for eSims for Gaza
Crips for eSims for Gaza is a collaboration between Jane Shi, Leah Lakshmi Piepzna-Samarasinha, and Alice Wong.
bit.ly
Periodic reminder that Kathleen Stock unapologetically crowdfunded for neo-Nazi bullies in their calamitous libel case against me.
![Tweet by Kathleen Stock: "Nina [Power] is an original, stimulating, light-footed writer who always makes me think; I'm very happy I supported her crowdfunder a few years back; and I get a lot from @compactmag_ where she is editor, and the podcast she contributes to. Keep doing what you do Nina, you are great."
Reply by Will: "Apart from the Neo-Nazi shit, sure". Embedded tweet by Luke Turner including antisemitic imagery: "During cross-examination, Nina Power & Daniel Miller both admitted they had written anonymously for the Parallax Optics site--a fact they had previously denied--with their *own pleadings* having characterised the account as "espousing and disseminating abhorrent antisemitic views."
Reply by Kathleen Stock: "Whatever the deeper truth here, I absolutely would not take Turner's word for it. And I would say more, but the last time I mentioned his name on Twitter, fairly benignly, I got threatened with legal action."
Reply by Will: "*Deeply* embarrassing tweet when you can literally read the judgment". Embedded tweet by Luke Turner: "A full copy of the High Court's Judgment, which I invite you to read, is available here: https://www.judiciary.uk/wp-content/uploads/2023/11/Miller-and-Power-v-Turner-08.11.23.pdf "
Reply by Will: "Still, it's only antisemitism"
Reply by Kathleen Stock: "Sorry Will, I'm not doing trial by twitter. You do it if you want. I've had enough of that shit to last a life time. Feel free to infer all the dastardly conclusions."](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:xietlj6hmqxkmgusmtenne4f/bafkreicwdbdi2r72q53aohrurehnw3fv2evihywbu752dowszt543hk2im)
Omar Khan@omaromalleykhan.bsky.social · 3w agoImagine crowd funding to support two people who lost a libel case when a judge concluded actually yes your friends are antisemities as a matter of fact (see below) and then still thinking you are entitled to speak about how racism is exaggerated I mean I guess you're at least consistently wrong
Another Covid surge is ramping up in the U.S. Year 6 of this. So predictable. Mask up, folks! 😷 www.npr.org/2026/08/14/n...
Is there a summer COVID-19 surge this year? Yep, it's ramping up again
Just like all previous summers since the pandemic began, COVID-19 cases are ticking up again, even while other health threats make more headlines.
npr.org
Other #SevereME people: do you consider whatever you wear as pajamas as “putting on clothes”? Or just your outside clothes you may change in to rarely when leaving? Surveys don’t specify but it’s the second, I’ve been wayyyy overestimating my capacity
We're excited to share one of our project's results in this upcoming Research Roundtable: "Vagus Nerve Stimulation Informal Tracking Project for ME/CFS and Long Covid" Friday August 21, 2026 at 11 am PT US, 2 pm ET US and 7 pm UK Register: us06web.zoom.us/webinar/regi... 1/3 #LongCovid #MECFS
Bad news out of Texas: the conservative Fifth Circuit of Appeals argued in a ruling that the state's voter suppression law did not violate disability civil rights laws, letting the cruel law stand in its disenfranchising glory. New from me at @motherjones.com. www.motherjones.com/politics/202...
A Trump judge called mail-in ballots a threat to democracy
The new ruling revived cruel aspects of Texas' voter suppression law.
motherjones.com
Inflammatory disorders can be brutal. I’d know personally (thanks vasculitis et al). But the misinformation, including on vaccines, is dangerous. A deep dive from me into how MAHA sped up the inflammation panic. New from me at @motherjones.com www.motherjones.com/politics/202...
The Great Inflammation panic
The wellness world's favorite buzzword has gone federal. For those of us with real inflammatory disorders, the misinformation isn't just annoying—it's harmful.
motherjones.com
I’d like to see more clinicians discuss dyssynergic defecation related to pelvic floor dysfunction, motility issues, dysautonomias, ME/CFS, brain and spine conditions, neuromuscular disorders Patients can’t be treated if it’s so stigmatized that discussions, nevermind diagnoses, can’t happen
New: 3 yrs ago I published exposé revealing Richard Hanania used pseudonym to write for Nazi sites Ever since I've watched centrist media rehabilitate him, accepting his ludicrous claim to have left white nationalism behind. My look at what it means, for @marisakabas.bsky.social' The Handbasket
You don’t have to hand it to Richard Hanania
The so-called "former" white supremacist's work doesn't show accountability—or that he's actually moved on from his earlier views, Christopher Mathias writes.
thehandbasket.co
Join us tomorrow! #LongCovid & #pwME patients will share triggers, treatments, remission events, symptom profiles, etc. Over 30 researchers will join including @drmaureenhanson.bsky.social, @sunsopeningband.bsky.social, @resiapretorius.bsky.social, @dbkell.bsky.social, @michaelpelusomd.bsky.social
Renegade Research@renegaderesearch.bsky.social · 4w agoJoin us for a Research Roundtable this week, "Patients to Researchers: Lived Experience" Friday, August 14 at 1 pm ET US #MECFS and #LongCovid patients will discuss their experiences to help researchers improve research projects and trials Register: us06web.zoom.us/webinar/regi... 1/2 🧵
A community member requested we share this. Please check it out! Emily has been part of our community for many years and needs a cervical spinal fusion and/or decompression and/or stent the veins in the left and/or right side of my head (and maybe more care to help) #pwME #SevereME
Emily Johnson@emilyrj.bsky.social · last mo.It’s so awful to have Chiari, IH, CSF leaks, CCI, AAO and AAI (slow internal decapitation) It’s very severe, I can feel my head popping off my neck and try to pop it back in, so painful My neurosurgery follow-up is soon, please donate and share: www.gofundme.com/f/help-emily...
#SevereME is tornado storms but you can’t wake or get up until maybe an hour after sirens go off, you look out a window and hope you don’t get hit then fall asleep uncontrollably well before you’re out of danger, if you’re lucky someone checks on you later, and for now you live
Yesterday I told an ultrasound technician “My body is so damaged, if it was a house then someone would need to call FEMA” He replied “But would FEMA make it better or worse?” and we laughed Then the training resident asked “What’s FEMA?” and I felt time laughing and anointing me as An Old
Yikes. Women accounted for all of the job losses and all of the labor force decline in July, according to @nwlc.org
It’s so awful to have Chiari, IH, CSF leaks, CCI, AAO and AAI (slow internal decapitation) It’s very severe, I can feel my head popping off my neck and try to pop it back in, so painful My neurosurgery follow-up is soon, 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
gofundme.com