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
1/ The US Government has quietly removed a memorial to Black soldiers who died in World War II from the Netherlands American Cemetery in Margraten, South Limburg. The move follows a complaint from the right-wing Heritage Foundation to the American Battle Monuments Commission. ⬇️
November 9, 2025 at 9:23 AM
1/ The US Government has quietly removed a memorial to Black soldiers who died in World War II from the Netherlands American Cemetery in Margraten, South Limburg. The move follows a complaint from the right-wing Heritage Foundation to the American Battle Monuments Commission. ⬇️
Reposted by Emily Johnson
Voter anger over the cost of living is hurtling forward into the midterm elections, when pivotal contests will be decided by communities that are home to fast-rising electric bills or fights over who's footing the bill for energy-hungry data centers.
Voters’ anger at high electricity bills and data centers looms over 2026 midterms
Electricity costs were a key issue in this week’s elections for governor in New Jersey and Virginia, a data center hotspot.
trib.al
November 9, 2025 at 2:31 PM
Voter anger over the cost of living is hurtling forward into the midterm elections, when pivotal contests will be decided by communities that are home to fast-rising electric bills or fights over who's footing the bill for energy-hungry data centers.
Reposted by Emily Johnson
The family has a go fund me if anyone wants to help with medical expenses:
www.gofundme.com/f/help-adria...
www.gofundme.com/f/help-adria...
Donate to Help Adriana's Family During This Heartbreaking Journey, organized by April Newkirk
This journey has been deeply saddening and heartbreaking since F… April Newkirk needs your support for Help Adriana's Family During This Heartbreaking Journey
www.gofundme.com
November 9, 2025 at 4:18 AM
The family has a go fund me if anyone wants to help with medical expenses:
www.gofundme.com/f/help-adria...
www.gofundme.com/f/help-adria...
Reposted by Emily Johnson
Long Covid is common - ~1 in 5 people have it, and it's on the rise. Reinfections add to the burden. It's the most common chronic condition in children.
Actual coverage on this at last from CBC
Actual coverage on this at last from CBC
November 8, 2025 at 4:44 PM
Long Covid is common - ~1 in 5 people have it, and it's on the rise. Reinfections add to the burden. It's the most common chronic condition in children.
Actual coverage on this at last from CBC
Actual coverage on this at last from CBC
Reposted by Emily Johnson
Thinking about the social stigma against eating fast food in a country where poor people are being starved by the govt, the cost of groceries and fresh vegetables are astronomical, and a cheeseburger at McDonald’s costs $3.50.
“Clean” and “healthy” eating rhetoric is racist, ableist, and classist.
“Clean” and “healthy” eating rhetoric is racist, ableist, and classist.
November 8, 2025 at 9:50 PM
Thinking about the social stigma against eating fast food in a country where poor people are being starved by the govt, the cost of groceries and fresh vegetables are astronomical, and a cheeseburger at McDonald’s costs $3.50.
“Clean” and “healthy” eating rhetoric is racist, ableist, and classist.
“Clean” and “healthy” eating rhetoric is racist, ableist, and classist.
Reposted by Emily Johnson
So uh.
I've spent the last five years working on a book about grief, mourning, who is allowed to grieve and how, and where we go from here, and...
you can now preorder it!
I've spent the last five years working on a book about grief, mourning, who is allowed to grieve and how, and where we go from here, and...
you can now preorder it!
All My Dead Cats and Other Losses: Practicing Good Grief in a Culture That Fears Mourning
Practicing Good Grief in a Culture That Fears Mourning
bookshop.org
November 5, 2025 at 3:59 PM
So uh.
I've spent the last five years working on a book about grief, mourning, who is allowed to grieve and how, and where we go from here, and...
you can now preorder it!
I've spent the last five years working on a book about grief, mourning, who is allowed to grieve and how, and where we go from here, and...
you can now preorder it!
Reposted by Emily Johnson
There’s a viral post on Twitter with 134k likes because when Zohran got a question from a disabled person in a wheelchair he … answered it.
Idk man maybe we shouldn’t regard that as heroic
Idk man maybe we shouldn’t regard that as heroic
November 7, 2025 at 11:12 PM
There’s a viral post on Twitter with 134k likes because when Zohran got a question from a disabled person in a wheelchair he … answered it.
Idk man maybe we shouldn’t regard that as heroic
Idk man maybe we shouldn’t regard that as heroic
Reposted by Emily Johnson
Although we're not where we should be, we're on a significantly better trajectory than we were 10 years ago.
10 Years After the Paris Climate Agreement, Here's Where We Are (Gift Article)
Has anything really changed in the decade since the Paris Agreement was reached? Actually, quite a lot.
www.nytimes.com
November 7, 2025 at 6:13 PM
Although we're not where we should be, we're on a significantly better trajectory than we were 10 years ago.
Reposted by Emily Johnson
I really hope some members of the Covid cautious community doesn't take this and run and be incredibly ableist in portraying neurodevelopmental disabilities as a horrible outcome.
“Among the 861 children whose mothers were SARS-CoV-2–positive during pregnancy, 140 (16.3%) received a neurodevelopmental diagnosis by 3 years of age, compared with 1,680 (9.7%) of the 17,263 remaining children from SARS-CoV-2–negative pregnancies.” www.massgeneralbrigham.org/en/about/new...
COVID-19 During Pregnancy Linked to Higher Risk of Neurodevelopmental Disorders in Children | Mass General Brigham
Children born to mothers who had COVID-19 while pregnant face an elevated risk of developmental disorders by the time they turn 3 years old, including speech delays, autism, motor disorders, and other...
www.massgeneralbrigham.org
November 1, 2025 at 7:00 PM
I really hope some members of the Covid cautious community doesn't take this and run and be incredibly ableist in portraying neurodevelopmental disabilities as a horrible outcome.
Reposted by Emily Johnson
The use of “risk” here is so fucking terrible. Like having an autistic kid is a bad thing. A risk you want to avoid. Like autistic people are something to get rid of.
🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃
🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃
A new study adds to the evidence that viral infections during pregnancy might contribute to a child’s likelihood of having autism
COVID During Pregnancy May Increase Risk of Autism in Kids
A new study adds to the evidence that viral infections during pregnancy might contribute to a child’s likelihood of having autism
www.scientificamerican.com
November 3, 2025 at 3:07 PM
The use of “risk” here is so fucking terrible. Like having an autistic kid is a bad thing. A risk you want to avoid. Like autistic people are something to get rid of.
🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃
🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃🙃
Reposted by Emily Johnson
I'm really glad @thinkingautism.com went over this study and avoided the eugenicist rhetoric and ideas behind so much of the coverage of it. There are a million good reasons to avoid Covid in pregnancy. Leave autistic babies out of it!
buttondown.com/TPGA/archive...
buttondown.com/TPGA/archive...
Autism and Covid infection during pregnancy: Guess what??
The risks of Covid infection in pregnancy unrelated to autism are sufficient to reinforce public health measures and messaging to prevent Covid infection during pregnancy – including vaccination.
buttondown.com
November 3, 2025 at 7:43 PM
I'm really glad @thinkingautism.com went over this study and avoided the eugenicist rhetoric and ideas behind so much of the coverage of it. There are a million good reasons to avoid Covid in pregnancy. Leave autistic babies out of it!
buttondown.com/TPGA/archive...
buttondown.com/TPGA/archive...
Reposted by Emily Johnson
A lot of people seem to think it’s a euphemism when we say “autism isn’t an illness, it’s a difference.” Nope! We #autistic people are generally straightforward, & we meant exactly what we said.
Stop treating us as a health “risk.” Stop researching how to prevent people like us from being born.
Stop treating us as a health “risk.” Stop researching how to prevent people like us from being born.
Scientific American changed its headline from “risk of autism” to “likelihood of having autism.”
Thanks for the slightly less stigmatizing language. That’s cool. But…The problem is the very idea that we should avoid, prevent, &/ fear autism. The article isn’t fixable, because it shouldn’t be news.
Thanks for the slightly less stigmatizing language. That’s cool. But…The problem is the very idea that we should avoid, prevent, &/ fear autism. The article isn’t fixable, because it shouldn’t be news.
November 3, 2025 at 6:54 PM
A lot of people seem to think it’s a euphemism when we say “autism isn’t an illness, it’s a difference.” Nope! We #autistic people are generally straightforward, & we meant exactly what we said.
Stop treating us as a health “risk.” Stop researching how to prevent people like us from being born.
Stop treating us as a health “risk.” Stop researching how to prevent people like us from being born.
Reposted by Emily Johnson
Lots more details on Kaufman's use of GLP-1 drugs in his practice in this video/podcast: https://www.youtube.com/watch?v=e_i3d6_I8Y8
October 17, 2025 at 7:07 PM
Lots more details on Kaufman's use of GLP-1 drugs in his practice in this video/podcast: https://www.youtube.com/watch?v=e_i3d6_I8Y8
Reposted by Emily Johnson
Dempsey's case series on 47 patients with mast cell activation syndrome: https://pubmed.ncbi.nlm.nih.gov/40675372/
Utility of glucagon-like-peptide-1-receptor agonists in mast cell activation syndrome - PubMed
GLP-1RAs may have substantial benefit in MCAS. Randomized controlled trials are needed to assess the efficacy, and identify optimal dosing, of GLP-1RA treatment in MCAS.
pubmed.ncbi.nlm.nih.gov
October 17, 2025 at 6:52 PM
Dempsey's case series on 47 patients with mast cell activation syndrome: https://pubmed.ncbi.nlm.nih.gov/40675372/
Reposted by Emily Johnson
Please register! Would love to see you at the next @renegaderesearch.bsky.social volunteer info session!
I began volunteering a few months ago, it’s great if you’re looking for remote and flexible ways to help patient-led research and community care
I began volunteering a few months ago, it’s great if you’re looking for remote and flexible ways to help patient-led research and community care
We will host a Volunteer Info Session on Sat., Nov. 15! We're seeking volunteers to help with nonprofit tasks and research projects such as our upcoming Vielight studies
Email event@renegade-research.org with event questions and contact@renegade-research.org to volunteer
Register in next post 1/2
Email event@renegade-research.org with event questions and contact@renegade-research.org to volunteer
Register in next post 1/2
November 5, 2025 at 11:30 PM
Please register! Would love to see you at the next @renegaderesearch.bsky.social volunteer info session!
I began volunteering a few months ago, it’s great if you’re looking for remote and flexible ways to help patient-led research and community care
I began volunteering a few months ago, it’s great if you’re looking for remote and flexible ways to help patient-led research and community care
Reposted by Emily Johnson
The paper Dr. Stuart Malcolm cited at our Microdosing GLP-1/GIP Receptor Agonists in #MECFS #LongCovid roundtable: pubmed.ncbi.nlm.nih.gov/36907221/
More research on GLP-1/GIP RAs treating intracranial hypertension symptoms: tinyurl.com/ennwun4x
tinyurl.com/u6ad2xa4
tinyurl.com/2hramz8n #MedSky
More research on GLP-1/GIP RAs treating intracranial hypertension symptoms: tinyurl.com/ennwun4x
tinyurl.com/u6ad2xa4
tinyurl.com/2hramz8n #MedSky
November 6, 2025 at 7:49 PM
The paper Dr. Stuart Malcolm cited at our Microdosing GLP-1/GIP Receptor Agonists in #MECFS #LongCovid roundtable: pubmed.ncbi.nlm.nih.gov/36907221/
More research on GLP-1/GIP RAs treating intracranial hypertension symptoms: tinyurl.com/ennwun4x
tinyurl.com/u6ad2xa4
tinyurl.com/2hramz8n #MedSky
More research on GLP-1/GIP RAs treating intracranial hypertension symptoms: tinyurl.com/ennwun4x
tinyurl.com/u6ad2xa4
tinyurl.com/2hramz8n #MedSky
Reposted by Emily Johnson
#disability people, here’s a link to the Renegade Research lecture about our research. BTW, I am not a consultant, not looking for patients or subjects, not selling snake oil, and don’t want anything from anyone. We have some hopeful news for many chronic illnesses. www.youtube.com/watch?v=J_WR...
Orthostatic Flow Syndrome (Presentation Only Version) by SJ Smith, MD Clinician's Roundtable 04/25
YouTube video by Renegade Research
www.youtube.com
August 12, 2025 at 6:47 PM
#disability people, here’s a link to the Renegade Research lecture about our research. BTW, I am not a consultant, not looking for patients or subjects, not selling snake oil, and don’t want anything from anyone. We have some hopeful news for many chronic illnesses. www.youtube.com/watch?v=J_WR...
Reposted by Emily Johnson
Can't make it or need to watch it at different speed? @renegaderesearch.bsky.social Roundtable recordings are posted to Renegade Research YouTube channel here:
www.youtube.com/@renegaderes...
www.youtube.com/@renegaderes...
Renegade Research
Decentralized patient-led research and clinical education. Focused on ME/CFS, Long Covid, and co-morbidities.
www.youtube.com
June 24, 2025 at 6:09 PM
Can't make it or need to watch it at different speed? @renegaderesearch.bsky.social Roundtable recordings are posted to Renegade Research YouTube channel here:
www.youtube.com/@renegaderes...
www.youtube.com/@renegaderes...
Reposted by Emily Johnson
Next time you shop on #Amazon, use our affiliate link below to help support Renegade Research “at no additional cost to you” by shopping as you usually do. Our non-profit organization will receive a small percentage from Amazon. This helps our NPO operate. 💙 Thank you!
🔗 amzn.to/3DKgOaX
🔗 amzn.to/3DKgOaX
Today's Deals
amzn.to
June 22, 2025 at 2:45 PM
Next time you shop on #Amazon, use our affiliate link below to help support Renegade Research “at no additional cost to you” by shopping as you usually do. Our non-profit organization will receive a small percentage from Amazon. This helps our NPO operate. 💙 Thank you!
🔗 amzn.to/3DKgOaX
🔗 amzn.to/3DKgOaX
Reposted by Emily Johnson
Did you miss a past #Research or #Clinician Roundtable? Do you have questions? Are you an MD interested in speaking at a future event?
Email: event@renegade-research.org
✅️ Upcoming 2025 Events
www.renegade-research.org/events-list
✅️ Past Roundtables
m.youtube.com/@renegaderes... #medSky
Email: event@renegade-research.org
✅️ Upcoming 2025 Events
www.renegade-research.org/events-list
✅️ Past Roundtables
m.youtube.com/@renegaderes... #medSky
April 15, 2025 at 4:42 PM
Did you miss a past #Research or #Clinician Roundtable? Do you have questions? Are you an MD interested in speaking at a future event?
Email: event@renegade-research.org
✅️ Upcoming 2025 Events
www.renegade-research.org/events-list
✅️ Past Roundtables
m.youtube.com/@renegaderes... #medSky
Email: event@renegade-research.org
✅️ Upcoming 2025 Events
www.renegade-research.org/events-list
✅️ Past Roundtables
m.youtube.com/@renegaderes... #medSky
Reposted by Emily Johnson
Our third poll is live! This one is for people about responses to anesthesia / sedation / numbing (including dental) in people who have neither ME/CFS meeting Canadian Consensus Criteria (CCC) nor a hypermobile connective tissue disorder/disease/issue
Go to X to take part: x.com/RenegadeRes/...
Go to X to take part: x.com/RenegadeRes/...
Renegade Research on X: "This is a thread with 14 polls about responses to anesthesia / sedation / numbing (including dental) in people who have neither ME/CFS meeting Canadian Consensus Criteria (CCC) nor a hypermobile connective tissue disorder/disease/issue. You can have other conditions and https://t.co/ecMH7xmbnE" / X
This is a thread with 14 polls about responses to anesthesia / sedation / numbing (including dental) in people who have neither ME/CFS meeting Canadian Consensus Criteria (CCC) nor a hypermobile connective tissue disorder/disease/issue. You can have other conditions and https://t.co/ecMH7xmbnE
x.com
November 7, 2025 at 4:22 AM
Our third poll is live! This one is for people about responses to anesthesia / sedation / numbing (including dental) in people who have neither ME/CFS meeting Canadian Consensus Criteria (CCC) nor a hypermobile connective tissue disorder/disease/issue
Go to X to take part: x.com/RenegadeRes/...
Go to X to take part: x.com/RenegadeRes/...
Reposted by Emily Johnson
Update: $950/$1750 raised so far
My rent is due tomorrow and I truly appreciate your help surviving during this very difficult time for me and my family
$maelee21
V: @ Maelee-Johnson
PayPal.me/maeleeJ
ko-fi.com/maedaej
#neisvoid #spoonie #disabilitycommunity #helpfolkslive2025
My rent is due tomorrow and I truly appreciate your help surviving during this very difficult time for me and my family
$maelee21
V: @ Maelee-Johnson
PayPal.me/maeleeJ
ko-fi.com/maedaej
#neisvoid #spoonie #disabilitycommunity #helpfolkslive2025
October 31, 2025 at 6:06 PM
Update: $950/$1750 raised so far
My rent is due tomorrow and I truly appreciate your help surviving during this very difficult time for me and my family
$maelee21
V: @ Maelee-Johnson
PayPal.me/maeleeJ
ko-fi.com/maedaej
#neisvoid #spoonie #disabilitycommunity #helpfolkslive2025
My rent is due tomorrow and I truly appreciate your help surviving during this very difficult time for me and my family
$maelee21
V: @ Maelee-Johnson
PayPal.me/maeleeJ
ko-fi.com/maedaej
#neisvoid #spoonie #disabilitycommunity #helpfolkslive2025
Reposted by Emily Johnson
I owe ~$1500 (see image) to the hospital for my 10/20/2025 procedures. Donations to Help Hope Live=TAX DEDUCTIBLE. I can't access funds w/out medical receipts!
W/ACA premiums skyrocketing, I will be uninsured by 01/01 & need to raise $500 for that ...
helphopelive.org/campaign/159...
W/ACA premiums skyrocketing, I will be uninsured by 01/01 & need to raise $500 for that ...
helphopelive.org/campaign/159...
November 5, 2025 at 3:29 PM
I owe ~$1500 (see image) to the hospital for my 10/20/2025 procedures. Donations to Help Hope Live=TAX DEDUCTIBLE. I can't access funds w/out medical receipts!
W/ACA premiums skyrocketing, I will be uninsured by 01/01 & need to raise $500 for that ...
helphopelive.org/campaign/159...
W/ACA premiums skyrocketing, I will be uninsured by 01/01 & need to raise $500 for that ...
helphopelive.org/campaign/159...
Reposted by Emily Johnson
NewMatch is such a cool program. They even match monthly donations! $5 a month becomes $10 a month for the whole next year!
We're kicking off our biggest fundraiser of the year by participating in NewsMatch, a national campaign to support newsrooms across the US run by the Institute for Nonprofit News.
We need your help to keep telling #LongCOVID stories. Will you donate today? the-sick-times.fundjournalism.org/donate/
We need your help to keep telling #LongCOVID stories. Will you donate today? the-sick-times.fundjournalism.org/donate/
November 1, 2025 at 2:42 PM
NewMatch is such a cool program. They even match monthly donations! $5 a month becomes $10 a month for the whole next year!
Please register! Would love to see you at the next @renegaderesearch.bsky.social volunteer info session!
I began volunteering a few months ago, it’s great if you’re looking for remote and flexible ways to help patient-led research and community care
I began volunteering a few months ago, it’s great if you’re looking for remote and flexible ways to help patient-led research and community care
We will host a Volunteer Info Session on Sat., Nov. 15! We're seeking volunteers to help with nonprofit tasks and research projects such as our upcoming Vielight studies
Email event@renegade-research.org with event questions and contact@renegade-research.org to volunteer
Register in next post 1/2
Email event@renegade-research.org with event questions and contact@renegade-research.org to volunteer
Register in next post 1/2
November 5, 2025 at 11:30 PM
Please register! Would love to see you at the next @renegaderesearch.bsky.social volunteer info session!
I began volunteering a few months ago, it’s great if you’re looking for remote and flexible ways to help patient-led research and community care
I began volunteering a few months ago, it’s great if you’re looking for remote and flexible ways to help patient-led research and community care