iiinova — where your digital self keeps evolving

Reposted by C.H. Romatowski

Tomorrow (Sunday) is The Big Sit! Our family will spend the day in a 17ft circle trying to find as many birds as possible to raise funds for #MECFS research. We’re inviting people to donate $1 per bird we (or you) find to @openmedf.bsky.social openmedicinefoundation.crowdchange.co/61233?utm_so...

openmedicinefoundation.crowdchange.co

BigSitToCureME

154

Reposted by C.H. Romatowski

Rachel Fairbank @sweetsciencewriter.bsky.social · 11h

“The children who are randomly selected not to receive the birth dose of the vaccine, those who “lost the lottery”, face in their earliest days the risk of contracting hepatitis B, which can cause irreversible lifelong damage.” No words. I am speechless. This violates all ethical boundaries.

theguardian.com

Controversial vaccine trial touted by RFK Jr gets go-ahead in Guinea-Bissau

711445642

Reposted by C.H. Romatowski

It's ME(Jaime) @exceedhergrasp1.bsky.social · 13h

Got all the way to the end of a case study before Medscape said they'd used AI to help create it. That acknowledgement should be out front, not after I've read through the whole case.

2675

C.H. Romatowski @chromatowski.bsky.social · 12h

The CDC cites pain as a central issue to manage in ME/CFS, I don’t know if that could be any help? www.cdc.gov/me-cfs/manag... In terms of comorbidities, I don’t know if EDS is in play? Pain is def a recognized issue to manage there. But they recommend PT… onlinelibrary.wiley.com/doi/10.1002/...

onlinelibrary.wiley.com

Pain management in the Ehlers–Danlos syndromes

Chronic pain in the Ehlers–Danlos syndromes (EDS) is common and may be severe. According to one study, nearly 90% of patients report some form of chronic pain. Pain, which is often one of the first ...

220

C.H. Romatowski @chromatowski.bsky.social · 13h

Very cool, thank you for sharing!

050

C.H. Romatowski @chromatowski.bsky.social · 13h

Unfortunately I think that’s about right; securing pain management has become one of the toughest nuts to crack

120

Reposted by C.H. Romatowski

Barred and Boujee aka Madiba Dennie @audrelawdamercy.blacksky.app · 14h

My cousin organized a series of masked concerts in NYC so immunocompromised and other covid-conscious folks can still enjoy live music events, and is raising funds so he can keep doing so! Love and appreciation to anyone able to chip in 🙏🏾♥️ www.kickstarter.com/projects/pos...

kickstarter.com

Positive Deviance NYC: Building Clean Air Culture

Back our next three clean-air NYC music events in 2027 and join a growing community building a more accessible cultural life.

151008375

C.H. Romatowski @chromatowski.bsky.social · 13h

I’ve boosted, I hate how hard this is.

110

Reposted by C.H. Romatowski

Miranda 🌸 @crookedneighbor.bsky.social · 14h

Desperate ask but if anyone has any ideas at all about how to help get pain management reinstated for a friend with very severe ME in the hospital, please DM me. I don't know what to do or who to ask for help. We've lost too many people already and this is starting to feel really dire

21112

Reposted by C.H. Romatowski

Dr. Richard Pan @drpanmd.bsky.social · 15h

RFK Jr is now increasing toxins in our food after supporting increase use of glyphosate. Yet, there are still no standards to regulate ultrprocessed foods. But RFK Jr is taking away access to life saving vaccines from children. This is the real #MAHA .

02714

Reposted by C.H. Romatowski

Walker Bragman @walkerbragman.bsky.social · 15h

lol Lmao even Has there ever been a more obvious fraud than the promise to Make America Healthy Again?

20408111

Reposted by C.H. Romatowski

CIDRAP @cidrap.bsky.social · 09/10/2026

With Pennsylvania leading the way, US measles cases top 4,000 The US now has 4,080 confirmed cases, more than a quarter of which are in hard-hit Pennsylvania. Read more: bit.ly/4j9wya7

14521

Reposted by C.H. Romatowski

CIDRAP @cidrap.bsky.social · 09/10/2026

Kids vaccinated against chickenpox less likely to develop shingles, analysis finds While shingles rates are declining in younger people, they are increasing in older adults. Read more: bit.ly/4hPXyZX 📷: CDC/ K.L. Hermann

2329

C.H. Romatowski @chromatowski.bsky.social · 10/10/2026

Ugh the worst game ever. Hope you are back to baseline soon!

110

Reposted by C.H. Romatowski

Dr Nili Kaplan-Myrth, MD PhD @nilikm.bsky.social · 09/10/2026

2 day old here this morning, the loveliest way to end the week. Infant had her RSV vaccine at birth. Gave her mum a booster of the Covid-19 vaccine and a flu shot. Friendly reminder to get your Covid-19 and flu shots this autumn (and RSV vaccines for infants/seniors who haven’t had one). 💉

411721

Reposted by C.H. Romatowski

Senator Patty Murray @murray.senate.gov · 09/10/2026

I am pushing legislation to make sure ALL FDA-approved forms of contraception—including birth control pills, IUDs, and more–are COVERED for patients. No fees. No hurdles. No out-of-pocket costs.

1436883

Reposted by C.H. Romatowski

🆂🆃🅴🆅🅴🅽 🌈☕🐸 @zencoffeebreak.com · 09/10/2026

Lost my job due to Long COVID. Lost my health insurance & my doctor due to losing my job. Joke ass country.

1164

Reposted by C.H. Romatowski

Environmental Voter Project @environmentalvoter.bsky.social · 09/10/2026

🚨 MICHIGAN Voter File Update: 296,382 Michiganders have already voted early, 4,303 of whom (1.5%) are climate voters we're mobilizing who just cast their first midterm ballots ever! 🗳 Let's hear it for our awesome Environmental Voter Project volunteers! 25 days to go!

01610

Reposted by C.H. Romatowski

BK. Titanji @boghuma.bsky.social · 09/10/2026

When members of the IRB that reviewed a study are resigning in protest because they recognize the unethical design of the study and the avoidable harm it will cause, maybe it is a sign to no proceed with said study. Great reporting in the guardian. www.theguardian.com/society/2026...

theguardian.com

Controversial vaccine trial touted by RFK Jr gets go-ahead in Guinea-Bissau

9286129

Reposted by C.H. Romatowski

Billy Hanlon @bhanlon15.bsky.social · 09/10/2026

George Mason Univ: 'New Study Explores Overlap Between Long COVID and Post-Treatment Lyme Disease' 'Although public attention has shifted away from the pandemic, long COVID remains a significant health concern' science.gmu.edu/news/new-stu...

science.gmu.edu

New Study Explores Overlap Between Long COVID and Post-Treatment Lyme Disease | GMU College of Science

1106

Reposted by C.H. Romatowski

Rachel Fairbank @sweetsciencewriter.bsky.social · 10/10/2026

In my experience, “treatment for this disease primarily consists of supplements and lifestyle changes,” is code for “this is a debilitating disease that we haven’t bothered to study enough to actually develop meaningful treatments.”

2256

Reposted by C.H. Romatowski

Billy Hanlon @bhanlon15.bsky.social · 09/10/2026

Tuning into the Yale Center for Infection and Immunity (YCII) webinar today focused on Long COVID, post-acute infection syndromes (PAIS), and the latest advances in infection and immunity research!

2124

C.H. Romatowski @chromatowski.bsky.social · 09/10/2026

Wow! Thrilled to see Virginia Young Dems @vayd.bsky.social doing an online event on Thurs Oct 15 for POTS (Postural Orthostatic Tachycardia Syndrome) awareness month! Will feature AG Jay Jones @jonesjay.bsky.social—thank you all so much for shining a spotlight on this often-devastating condition!

mobilize.us

VAYD POTS Awareness Month Virtual Roundtable · Virginia Young Democrats

Join the Virginia Young Democrats during POTS Awareness Month for a conversation focused on supporting our members living with postural orthostatic tachycardia syndrome (POTS) and advocating for the b...

1102

Reposted by C.H. Romatowski

Gary Legum @glegum.bsky.social · 08/10/2026

Hasan was paralyzed in the shooting, so as if this wasn't all bad enough already, sit with the image of him being executed while in a wheelchair for that extra frisson of barbarity.

511517398

Reposted by C.H. Romatowski

emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 09/10/2026

Required reading for doctors, journalists, & anyone who cares about anyone w/ ME or Long Covid ⬇️ Includes excellent history of #GreatestMEdicalScandal & how the ignorance of doctors re #MECFS is continually renewed through informal (mis)training + biased media www.sciencedirect.com/science/arti...

sciencedirect.com

25422

Reposted by C.H. Romatowski

Julia Métraux @juliametraux.bsky.social · 08/10/2026

Looking for an employment lawyer who has supported people with Long Covid for an article I'm working on who would have 15 minutes to speak Monday-Wednesday next week. Please reach out at jmetraux@motherjones.com

1146115

Reposted by C.H. Romatowski

Disability Culture Lab @disabilitylab.bsky.social · 08/10/2026

In a new Disability Culture Currents piece, Rebecca Cokley, Director of Ford Foundation’s U.S. Disability Rights program and Co-Founder of Artichoke Credit Union, reflects on how — and why — the new institution was designed with and for the disability community. Read more: tinyurl.com/DCCurrents.

Text reads: “Quote from Rebecca Cokley (she/her), Director, Ford Foundation’s U.S. Disability Rights program, Co-Founder, Artichoke Credit Union.
‘As a credit union, Artichoke is member-owned. That means that, unlike a regular bank, this is an entity owned by people with disabilities, our families, and the organizations that support and serve us. We designed Artichoke Credit Union so that no disabled person is treated as an afterthought in our own financial story.’ ‘A New Approach to Closing the Disability Wealth Gap.’ Link in bio: tinyurl.com/DCCurrents.”

Graphic with black and white images of Rebecca Cokley, a white woman with dwarfism and red hair, wearing a black jacket and an animal print shirt. There is a white text bubble with a quote from the piece against an orange background with a lightning bolt pattern.

174

Reposted by C.H. Romatowski

Sheryl Gay Stolberg @sherylnyt.bsky.social · 08/10/2026

NEW: RFK is planning a major vaccine injury initiative, including more research, a clinic at NIH, and a new billing code so doctors can be reimbursed for filing reports of side effects. Experts say more research is needed. But they're wary. www.nytimes.com/2026/10/07/u...

nytimes.com

RFK Jr. Plans Vaccine Injury Initiative, Drawing Wary Eye From Experts (Gift Article)

Vaccine safety experts say more research into the side effects would be welcome yet question whether the health secretary’s effort will be grounded in science.

145329

Reposted by C.H. Romatowski

Don Moynihan @donmoyn.bsky.social · 08/10/2026

Not beating the eugenics accusations

17956297

C.H. Romatowski @chromatowski.bsky.social · 08/10/2026

Lines up with patient-reported experience that in the context of PEM, exercise often just takes away from other activities (like ADLs). I really hope this paper helps POTS practitioners take this knowledge on board.

24618

Reposted by C.H. Romatowski

Jon Douglas @atranscendedman.bsky.social · 06/10/2026

NIH RECOVER is launching a new wave of Long COVID pathobiology studies using 1.5 million biosamples. The focus is shifting from symptom clusters to biological endotypes, including viral persistence, immune mechanisms and biomarkers. recovercovid.org/news/new-pat...

recovercovid.org

New pathobiology studies look to accelerate RECOVER’s progress

The next phase of RECOVER’s pathobiology studies will focus on discoveries that can more immediately inform efforts to diagnose, prevent, and treat Long COVID.

0135

Reposted by C.H. Romatowski

Miranda 🌸 @crookedneighbor.bsky.social · 07/10/2026

WHOA Ngl though, if they can exempt a whole borough, they can exempt a disease that makes 75% of people unable to work #MECFS #FrailAndFurious @meactnet.bsky.social

084

Reposted by C.H. Romatowski

Prof. Michael Fuhrer @michaelsfuhrer.bsky.social · 08/10/2026

The percentage of emergency department visits for influenza has passed Covid-19 last week in the US. Levels are still low compared to mid-winter peaks BUT high for the date (typically reaching the current levels in late Oct or Nov) and highlight the early onset of this year's flu season.

2164

Reposted by C.H. Romatowski

Myra Batchelder @myrabatchelder.bsky.social · 07/10/2026

"Disabled women more likely to skip cervical cancer screening, new data show" www.cidrap.umn.edu/human-papill...

cidrap.umn.edu

Disabled women more likely to skip cervical cancer screening, new data show

0104

Reposted by C.H. Romatowski

David Tuller @davetuller1.bsky.social · 07/10/2026

This interview about the has had 15,000+ views in the last few days. @georgemonbiot.bsky.social wrote an important column about the situation for ME/CFS patients, and I'm glad he found the time to talk with me about it. www.youtube.com/watch?v=Maae...

youtube.com

Interview with George Monbiot about Guardian column on ME/CFS

YouTube video by David M Tuller

16120

Reposted by C.H. Romatowski

New York Attorney General Letitia James @newyorkstateag.bsky.social · 05/10/2026

Secretary Robert F. Kennedy, Jr. and the CDC have stopped recommending seven vaccines for children, including vaccines that protect against hepatitis B, RSV, and meningitis. These vaccines have kept millions of children out of the hospital and saved countless lives. I'm suing.

521130339

Reposted by C.H. Romatowski

Jeremy Berg @jeremymberg.bsky.social · 06/10/2026

Read the chapter in Michael Lewis’s book Blockers about Francis Collins and NIH in the middle of the night. Lewis relied on my perceptions of Director Bhattacharya in his depiction. Will likely read the book today. Another great book from Michael Lewis (but I might be biased).

A section from Micheal Lewis’s book Blockers introducing Jeremy Berg.

3489

C.H. Romatowski @chromatowski.bsky.social · 07/10/2026

“Long Covid exposes critical gaps in traditional security thinking, particularly in addressing slow-onset, mass-disabling threats.”

0309

Reposted by C.H. Romatowski

Laura Bassett @lebassett.bsky.social · 06/10/2026

This strikes me as really fuckin bad

441125236

Reposted by C.H. Romatowski

Eric Topol @erictopol.bsky.social · 06/10/2026

Published today, there's a lot in Michael Lewis's new book we didn't know about. Including the NIH, unbridled assertion of power, cruelty, and many civil servant heroes (the "blockers") erictopol.substack.com/p/michael-le...

erictopol.substack.com

Michael Lewis: The NIH “Murder Mystery,” DOGE, and Our Government Immune System

Our conversation on his new book BORDERS

513229

C.H. Romatowski @chromatowski.bsky.social · 07/10/2026

Just yesterday someone told me, again, that people get Covid once a year. Happily it’s time to update our priors on that.

061

C.H. Romatowski @chromatowski.bsky.social · 07/10/2026

For example: “In the Netherlands Infectieradar survey: “Cumulative infections have reached almost 2.5 per person, but the rate of new infections has slowed to only 0.14 per year in the last year, or about one infection per seven years.”

151

C.H. Romatowski @chromatowski.bsky.social · 07/10/2026

Read this if you’d like some encouraging Covid news (tl,dr: not yet endemic because rates of Covid are plunging rather than plateauing)

23814

Reposted by C.H. Romatowski

Judy Stone @drjudystone.bsky.social · 05/10/2026

Very cool re #DrugRepurposing: Washington State U researchers developed a modified form of #niclosamide engineered to seek out the macrophages that drive #endometriosis progression, reducing pain responses and lesion size in a mouse model. www.nature.com/articles/d41... via @drruth.bsky.social

nature.com

The ‘missed disease’ that affects 190 million: endometriosis drug shows early promise

Modified medication targets the cells implicated in the condition’s tell-tale lesions.

02010