C.H. Romatowski
@chromatowski.bsky.social
This account will prob be about biomed research—complex chronic illnesses and Covid—w/some material on disability justice and organizing.
ME ‘05, LC ‘23, many of their friends along the way. Very severe (FUNCAP 0.9). No unsolicited advice please!
ME ‘05, LC ‘23, many of their friends along the way. Very severe (FUNCAP 0.9). No unsolicited advice please!
Pinned
There should be infinitely more interest in this medical mystery.
How many doctors can even name the phenomenon described below?
I’ll give a hint: it’s the hallmark of a disease that affects 1.3% of US adults, per CDC. (So docs should know about it!)
#MedSky
How many doctors can even name the phenomenon described below?
I’ll give a hint: it’s the hallmark of a disease that affects 1.3% of US adults, per CDC. (So docs should know about it!)
#MedSky
Reposted by C.H. Romatowski
There are >800 LoCITT-T participants, & >200 people who are eligible & just need to take one more step to claim their spot.
There's time for new folks to join!
We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
There's time for new folks to join!
We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
November 26, 2025 at 6:40 PM
There are >800 LoCITT-T participants, & >200 people who are eligible & just need to take one more step to claim their spot.
There's time for new folks to join!
We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
There's time for new folks to join!
We're particularly hoping to enroll folks from ND, MS, & PR & more BIPOC participants:
longcovid.scripps.edu/locitt-t/?ut...
Reposted by C.H. Romatowski
"A Tribute to an Oracle, Alice Wong"
"Alice had the ability to look to the future and a world where laws and attitudes did not keep disabled people poor, pitied, and isolated."
essential reading on Alice from Rebecca Cokley
www.thenation.com/article/soci...
"Alice had the ability to look to the future and a world where laws and attitudes did not keep disabled people poor, pitied, and isolated."
essential reading on Alice from Rebecca Cokley
www.thenation.com/article/soci...
A Tribute to an Oracle, Alice Wong
Alice had the ability to look to the future and a world where laws and attitudes did not keep disabled people poor, pitied, and isolated.
www.thenation.com
November 26, 2025 at 9:49 PM
"A Tribute to an Oracle, Alice Wong"
"Alice had the ability to look to the future and a world where laws and attitudes did not keep disabled people poor, pitied, and isolated."
essential reading on Alice from Rebecca Cokley
www.thenation.com/article/soci...
"Alice had the ability to look to the future and a world where laws and attitudes did not keep disabled people poor, pitied, and isolated."
essential reading on Alice from Rebecca Cokley
www.thenation.com/article/soci...
Reposted by C.H. Romatowski
I think about this all the time
I also wonder how many kids are using ChatGPT because long Covid has prevented them from being able to actually read and write anymore
November 26, 2025 at 9:56 PM
I think about this all the time
Whew how much this weighs on me…
And honestly it could be partially Covid. Who the hell even knows. I guess I'm lucky I had 50 years of good brain health.
I have a friend whose 15 year old daughter has had Covid 5 times. Imagine how many more times she could get covid by the time she's 50. It's crazy to think about
I have a friend whose 15 year old daughter has had Covid 5 times. Imagine how many more times she could get covid by the time she's 50. It's crazy to think about
November 26, 2025 at 9:55 PM
Whew how much this weighs on me…
Reposted by C.H. Romatowski
Influenza can trigger #ME/CFS, which lasts for an indefinite period, not weeks. I’ve seen #longcovid downplayed with the same incorrect timeframe.
I got excited to see long flu mentioned, disappointed in the definition:
“There’s a small number of people who, for whatever reason, will have a protracted illness following influenza where they will have mental fogginess, excessive fatigue, and muscle aches for weeks,” Dr. Lamm says.
“There’s a small number of people who, for whatever reason, will have a protracted illness following influenza where they will have mental fogginess, excessive fatigue, and muscle aches for weeks,” Dr. Lamm says.
SELF: '7 of the Worst Things You Can Do During Cold And Flu Season'
'Dr. Steven Lamm internist & director..NYU Langone...also points out that it’s not just long COVID—people can get “long influenza” as well...they will have mental fogginess, excessive fatigue..'
www.self.com/story/cold-f...
'Dr. Steven Lamm internist & director..NYU Langone...also points out that it’s not just long COVID—people can get “long influenza” as well...they will have mental fogginess, excessive fatigue..'
www.self.com/story/cold-f...
November 26, 2025 at 6:57 PM
Influenza can trigger #ME/CFS, which lasts for an indefinite period, not weeks. I’ve seen #longcovid downplayed with the same incorrect timeframe.
Reposted by C.H. Romatowski
New data that supports metformin as a potential intervention to reduce #LongCovid www.authorea.com/users/100423...
Metformin at the time of Covid-19 infection and risk of Long Covid: A Target Trial Emulation Study
Background: Our objective was to evaluate metformin prescribed at the time of SARS-CoV-2 infection on the risk of developing Long Covid (LC) in electronic health record data. Methods: We conducted a n...
www.authorea.com
November 26, 2025 at 7:12 PM
New data that supports metformin as a potential intervention to reduce #LongCovid www.authorea.com/users/100423...
Reposted by C.H. Romatowski
I know there are many of you on here who've dealt with this.
Scientists: have you been the target of an online harassment campaign, doxxing, or weaponized FOIA requests? I'd like to talk to you about steps you had to take to protect your digital security for an upcoming Nature story. (You can be anonymous if necessary.)
RTs appreciated.
RTs appreciated.
November 26, 2025 at 12:43 AM
I know there are many of you on here who've dealt with this.
Reposted by C.H. Romatowski
There’s no paywall on this tragic personal story by Kennedy’s stoic cousin Tatiana Schlossberg.
But also, as I was searching in vain for a “gift” link I remembered that everyone with a @hclib.bsky.social card can read the entire New Yorker for free with the Libby app. 🌠
But also, as I was searching in vain for a “gift” link I remembered that everyone with a @hclib.bsky.social card can read the entire New Yorker for free with the Libby app. 🌠
November 22, 2025 at 3:37 PM
There’s no paywall on this tragic personal story by Kennedy’s stoic cousin Tatiana Schlossberg.
But also, as I was searching in vain for a “gift” link I remembered that everyone with a @hclib.bsky.social card can read the entire New Yorker for free with the Libby app. 🌠
But also, as I was searching in vain for a “gift” link I remembered that everyone with a @hclib.bsky.social card can read the entire New Yorker for free with the Libby app. 🌠
Reposted by C.H. Romatowski
New @pnas.org
"This work represents the most extensive study to
date regarding the effect of tattoo ink on the immune response and raises serious health concerns associated with the tattooing" including reduced response to Covid vaccination
www.pnas.org/doi/10.1073/...
"This work represents the most extensive study to
date regarding the effect of tattoo ink on the immune response and raises serious health concerns associated with the tattooing" including reduced response to Covid vaccination
www.pnas.org/doi/10.1073/...
Tattoo ink induces inflammation in the draining lymph node and alters the immune response to vaccination | PNAS
Despite safety concerns regarding the toxicity of tattoo ink, no studies have reported
the consequences of tattooing on the immune response. In thi...
www.pnas.org
November 25, 2025 at 7:35 PM
New @pnas.org
"This work represents the most extensive study to
date regarding the effect of tattoo ink on the immune response and raises serious health concerns associated with the tattooing" including reduced response to Covid vaccination
www.pnas.org/doi/10.1073/...
"This work represents the most extensive study to
date regarding the effect of tattoo ink on the immune response and raises serious health concerns associated with the tattooing" including reduced response to Covid vaccination
www.pnas.org/doi/10.1073/...
Great comment from @jefflubellc19.bsky.social in @annfammed.bsky.social.
He argues for the value of patient and caregiver observations and hypotheses, saying journals should publish more case studies and hypothesis papers from those groups.
Feat. @patientled.bsky.social!
#MedSky #MECFS #hEDS
He argues for the value of patient and caregiver observations and hypotheses, saying journals should publish more case studies and hypothesis papers from those groups.
Feat. @patientled.bsky.social!
#MedSky #MECFS #hEDS
To Ground Research in the Lived Experience of Patients and Caregivers, Give Us a Voice!
My daughter has been diagnosed with a range of chronic conditions, including Hyper-mobile Ehlers-Danlos Syndrome and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). I have approached my r...
www.annfammed.org
November 25, 2025 at 7:57 PM
Great comment from @jefflubellc19.bsky.social in @annfammed.bsky.social.
He argues for the value of patient and caregiver observations and hypotheses, saying journals should publish more case studies and hypothesis papers from those groups.
Feat. @patientled.bsky.social!
#MedSky #MECFS #hEDS
He argues for the value of patient and caregiver observations and hypotheses, saying journals should publish more case studies and hypothesis papers from those groups.
Feat. @patientled.bsky.social!
#MedSky #MECFS #hEDS
Reposted by C.H. Romatowski
major travel season is coming up. i will repeat my request from last year that whatever precautions you normally take, you try to do at least one step up during this more contagious time of year and when so many want to see their families! mask at the pharmacy, on the flight, at the grocery store
Glad to see this @wired.com guide on high quality masks! A KN95 can help protect you and your loved ones from COVID-19 and other airborne viruses, especially during this busy travel season. I only wish Wired wrote about the pandemic in the present tense 🙏😷
www.wired.com/story/best-d...
www.wired.com/story/best-d...
15 Good N95, KF94, and KN95 Face Masks to Buy Right Now
Flu season is here. These are the best disposable face coverings we’ve tested—and where you can find them.
www.wired.com
November 25, 2025 at 2:49 PM
major travel season is coming up. i will repeat my request from last year that whatever precautions you normally take, you try to do at least one step up during this more contagious time of year and when so many want to see their families! mask at the pharmacy, on the flight, at the grocery store
Reposted by C.H. Romatowski
It's now been over two months, and we still don't have any updates from the federal government on RFK Jr.'s Long COVID Consortium. During the meeting the head of ARPA-H stated they would have plans within "weeks".
thesicktimes.org/2025/10/21/i...
thesicktimes.org/2025/10/21/i...
It’s been a month. And we still don’t know much about Kennedy’s Long COVID consortium. - The Sick Times
Preliminary meetings are occurring amid the ongoing government shutdown, while some advocates call for Health Secretary Kennedy’s removal
thesicktimes.org
November 25, 2025 at 5:59 PM
It's now been over two months, and we still don't have any updates from the federal government on RFK Jr.'s Long COVID Consortium. During the meeting the head of ARPA-H stated they would have plans within "weeks".
thesicktimes.org/2025/10/21/i...
thesicktimes.org/2025/10/21/i...
Reposted by C.H. Romatowski
Ppl w #LongCovid in nyc: avoid the Mt Sinai clinic in union square.
It is not connected to the one lead by David Putrino. The union square is run by a nurse who is pushing SSRIs as the only possible Covid treatment & if you don’t want them they refuse to offer anything else.
And they insult you.
It is not connected to the one lead by David Putrino. The union square is run by a nurse who is pushing SSRIs as the only possible Covid treatment & if you don’t want them they refuse to offer anything else.
And they insult you.
November 24, 2025 at 7:29 PM
Ppl w #LongCovid in nyc: avoid the Mt Sinai clinic in union square.
It is not connected to the one lead by David Putrino. The union square is run by a nurse who is pushing SSRIs as the only possible Covid treatment & if you don’t want them they refuse to offer anything else.
And they insult you.
It is not connected to the one lead by David Putrino. The union square is run by a nurse who is pushing SSRIs as the only possible Covid treatment & if you don’t want them they refuse to offer anything else.
And they insult you.
Reposted by C.H. Romatowski
WOW! Autism Society of America, The Autistic Self-Advocacy Network, the Autism Science Foundation, the Autistic Women & Nonbinary Network and Autism Speaks put out a statement denouncing the CDC changing its website on vaccines
autisticadvocacy.org/2025/11/lead...
autisticadvocacy.org/2025/11/lead...
Leading Autism and Disability Organizations Statement on CDC's Vaccines and Autism Page
As national organizations dedicated to advancing the well-being of autistic individuals and partners across the disability and public health sectors, we are deeply disappointed by the latest update to...
autisticadvocacy.org
November 24, 2025 at 11:18 PM
WOW! Autism Society of America, The Autistic Self-Advocacy Network, the Autism Science Foundation, the Autistic Women & Nonbinary Network and Autism Speaks put out a statement denouncing the CDC changing its website on vaccines
autisticadvocacy.org/2025/11/lead...
autisticadvocacy.org/2025/11/lead...
Reposted by C.H. Romatowski
We're hiring for tenure-track faculty! Please apply if you have interests in immune responses to microbes and/or cancer, immune regulation, microbial infections (bacteria, viruses, parasites, fungi), the microbiota, and/or interests that span these disciplines.
arizona.csod.com/ux/ats/caree...
arizona.csod.com/ux/ats/caree...
Assistant/Associate/Full Professor (T/TE)
Establish or continue a successful, extramurally funded research program that will advance knowledge in the broad areas of immunobiology, as defined a...
arizona.csod.com
November 24, 2025 at 8:02 PM
We're hiring for tenure-track faculty! Please apply if you have interests in immune responses to microbes and/or cancer, immune regulation, microbial infections (bacteria, viruses, parasites, fungi), the microbiota, and/or interests that span these disciplines.
arizona.csod.com/ux/ats/caree...
arizona.csod.com/ux/ats/caree...
Reposted by C.H. Romatowski
1/5 My 2020 interview with Alice Wong is now out and ready to be shared! You can download it here: tinyurl.com/2wke8tk6 (Note that you may not be able to view it online if you’re not signed into Google, but anyone can download it.)
November 24, 2025 at 5:36 PM
1/5 My 2020 interview with Alice Wong is now out and ready to be shared! You can download it here: tinyurl.com/2wke8tk6 (Note that you may not be able to view it online if you’re not signed into Google, but anyone can download it.)
Reposted by C.H. Romatowski
Because of the ice raids, I haven’t been able to find a caregiver through medicaid since June. For three days a week I have to hire one from a company, and it cost $39.50 an hour. I owe $898 from my last bill and I’m struggling. If youd like to donate I would appreciate it ❤️
Donate to Critical Healthcare Support for Victoria, organized by Vee Copeland
Hello everyone,
My name is Victoria and thank you for checking out my gofundme.… Vee Copeland needs your support for Critical Healthcare Support for Victoria
www.gofundme.com
November 23, 2025 at 6:02 PM
Because of the ice raids, I haven’t been able to find a caregiver through medicaid since June. For three days a week I have to hire one from a company, and it cost $39.50 an hour. I owe $898 from my last bill and I’m struggling. If youd like to donate I would appreciate it ❤️
Reposted by C.H. Romatowski
Many disabled kids would benefit so much if parenting classes that focus on disability inclusion and the harms of ableism were widely available (so, free) to their parents.
November 24, 2025 at 1:37 AM
Many disabled kids would benefit so much if parenting classes that focus on disability inclusion and the harms of ableism were widely available (so, free) to their parents.
Reposted by C.H. Romatowski
It’s my birthday, but it’s also unfortunately the third anniversary of the day I got the Covid infection that disabled me. This year has been the hardest with the disease. I encourage you to be careful this holiday season, wear a mask and test, do not get or give Covid to anyone.
November 24, 2025 at 3:25 AM
It’s my birthday, but it’s also unfortunately the third anniversary of the day I got the Covid infection that disabled me. This year has been the hardest with the disease. I encourage you to be careful this holiday season, wear a mask and test, do not get or give Covid to anyone.
This whole thread is so worthwhile.
Found my doctors appointments got less frustrating once I started going in like “I really want to play badminton again 😢 but I can’t even push a cart around the grocery store 😢 and I’ve hit a wall where no matter what I do I can’t seem to increase my exercise capacity 😢 and it makes it hard to work”
The rationale behind these studies, Seltzer contests, is [that] “it presumes that the patient had never heard of exercise until a doctor told them [it] exists.”
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
Thanks to Simon Spichak for putting this idea into print. I've said multiple times in interviews that it's the strangest part... 🧵
November 24, 2025 at 12:10 AM
This whole thread is so worthwhile.
⬇️⬇️⬇️
I don't understand how anyone can watch how blatantly Grok is manipulated to answer the way ownership desires it to and then act like the other LLM chatbots couldn't possibly be similarly but less obviously compromised to produce responses in whatever way corporate interests and priorities dictate.
November 23, 2025 at 11:25 PM
⬇️⬇️⬇️
Really don’t understand why we don’t already have this option.
PLEASE im begging you make it so we can turn retweets off by person
November 23, 2025 at 10:58 PM
Really don’t understand why we don’t already have this option.
Reposted by C.H. Romatowski
Very happy to share that tomorrow, I will be able to share a transcript and downloadable video of an interview I conducted for The Viral Underclass in 2020 with Alice Wong. It will be freely available for any use, as part of an effort to share Alice’s archive.
November 23, 2025 at 8:51 PM
Very happy to share that tomorrow, I will be able to share a transcript and downloadable video of an interview I conducted for The Viral Underclass in 2020 with Alice Wong. It will be freely available for any use, as part of an effort to share Alice’s archive.
Ordinarily enrolling a thousand patients is a very protracted process of months or years—the speed of enrollment here is a chance to send a message that more trials should center patients like this one does.
To sign up or learn more:
To sign up or learn more:
November 23, 2025 at 9:19 PM
Ordinarily enrolling a thousand patients is a very protracted process of months or years—the speed of enrollment here is a chance to send a message that more trials should center patients like this one does.
To sign up or learn more:
To sign up or learn more: