C.H. Romatowski
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chromatowski.bsky.social
C.H. Romatowski
@chromatowski.bsky.social
7.8K followers 780 following 4.4K posts
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!
Posts Replies Media Videos
chromatowski.bsky.social
Well said by my friend @osayko.bsky.social.

Thinking of you #NEISvoid.
Tweet from Olenka Sayko @coco_chatel Holding space today for the disabled folks who are spending the holiday alone because their loved ones won't take any measures to prevent the spread of disease. And those who are simply too ill to gather with loved ones due to energy limitations. Know that you are loved. 7:15 AM • Nov 27, 2025 • 505 Views
November 27, 2025 at 3:16 PM
chromatowski.bsky.social
🥹 Thank you @hyperallergic.com 🥹

Story: hyperallergic.com/1057303/broo...
Screenshot: HYPERALLERGIC As the autumn chill pushes our events back indoors for the next seven months, it's critical that we do everything in our power to keep gatherings accessible to everyone — especially our community members with chronic illnesses, disabilities, and other conditions that require taking stringent COVID-19 safety precautions to protect their lives. One Brooklyn-based collective, Artists in Resistance (A.I.R.) NYC, is committed to not only hosting COVID-safer art and music events from borough to borough, but also ensuring that anybody can do so for free.
November 21, 2025 at 8:15 PM
chromatowski.bsky.social
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
Quote-tweet from Todd Davenport @sunsopeningband The post he’s quoting is from Afolabi Sokeye @SokeyeA • Nov 7 Text reads: What's the lore behind choosing your career path? Below is a stick figure drawing of a person chin in hands smiling at a computer screen. Todd’s text responding to the question reads: Somebody showed me two exercise test results from two tests conducted just a day apart, which had the same name at the top and they said were from the same person, but they looked like two completely different people-one kinda normalish and one in severe heart failure. How? 1:37 AM • Nov 20, 2025 • 470 Views
November 20, 2025 at 8:13 AM
chromatowski.bsky.social
I want to note, this study was funded by NIH and DOD. If you’d like to see more life-saving science, please tell your members of Congress to increase the budget for it!

The Capitol switchboard can connect you: (202) 224-3121.
DukeHealth The study was supported by funding from the National Institutes of Health (117 R01CA238217-01A1/02S1) and the Department of Defense (W81XWH-20-1-034618 and W81XWH-21-2-0031).
November 17, 2025 at 11:06 PM
chromatowski.bsky.social
Today in, with friends like these…

#MECFS #LongCovid
plague rat @x3r0gx4 Watching the Portuguese ME & LC conference...... is there any other group of major, life-destroying illnesses where longstanding clinicians in the field present on yoga asanas? 11:10 AM • Nov 12, 2025 • 2,513 Views
November 12, 2025 at 7:12 PM
chromatowski.bsky.social
This will be an agonizingly familiar read for every patient who’s encountered the 17-year lag in bringing scientific research from bench to bedside.

#NEISvoid #MECFS #IACC #LongCovid
The results of these studies are not controversial or contested among scientists who study reading. The findings have been incorporated into every major scientific model of how reading works. But cueing is still alive and well in schools. Goldberg soon discovered the decades of scientific evidence against cueing 25 She was shocked. She had never come across any of this science in her teacher preparation or on the job. And she started to wonder why not.
November 12, 2025 at 3:03 AM
chromatowski.bsky.social
This, from @alexanderchee.bsky.social, is so much what I want for the Long Covid and ME/CFS movements…

From: querent.substack.com/p/he-loves-n...
What I found myself thinking about was how the Mamdani campaign reminded me of how when I left college in 1989, ACT UP and QUEER NATION were righteous causes but also some of the most fun you could have fighting for the right things. Going to a gay club could be lonely when you were a 22 year old newcomer to San Francisco. But going to a meeting and finding a campaign, a committee, an errand or a mission-handing out condoms, for example, or helping offer HIV information, or flyering or wheatpasting for a demonstration, the demonstration itself, these all gave me a community and a sense of purpose when I needed one. I met friends I still have. Friends of all ages.
November 11, 2025 at 6:13 AM
chromatowski.bsky.social
Also, patients or caregivers who publish with Elsevier are eligible to get open-access fees waived!
In addition, patients and non-professional caregivers who participate in the publication of an article and have a preference or need to publish that article open access, but lack the funds for the Article Publishing Charge, can make a request for a waiver of the APC by emailing oapolicy@elsevier.com 7. Please include the article title; author(s); and the journal title you have
November 10, 2025 at 8:20 PM
chromatowski.bsky.social
#NEISvoid PSA

TIL patients and caregivers can get free access to Elsevier papers!

Email your request to [email protected] and include confirmation you are a patient. Turnaround is 48 hours.

#LongCovid #MECFS
Patient access Patients and non-professional caregivers can make requests for individual papers related to medicine and healthcare at no cost. These papers can be requested by e-mailing patientaccess@elsevier.com 7. We aim to provide the requested articles within 48 hours. Please include the article title and author(s), date published, and/or the URL if available. This will ensure that our team can locate the requested content as quickly as possible. Please include the text "I confirm | am a patient or non-professional caregiver" to confirm your eligibility to us this service; please do not disclose
November 10, 2025 at 7:45 PM
chromatowski.bsky.social
It’s a great question. Here’s what the authors are thinking about what it could be doing (sorry for the paywalled link).
Doxycycline may impact on schizophrenia risk through its immunomodulatory, anti-inflammatory, and antiapoptotic effects (30, 31). Recent research on stem cells derived from individuals with schizophrenia and healthy control subjects showed that administration of minocycline led to a reduction in microglial-mediated synaptic pruning (21), a process that is implicated in the disorder's pathophysiology (i.e., excessive synaptic pruning) and which is believed to be heavily advanced by the time of a schizophrenia diagnosis (32, 33) and can be detected even in advanced prodromal states such as those identified in current clinical high risk services (34). Indeed, there is some evidence, based on neuroimaging findings, suggesting that people diagnosed with clinical high risk syndromes for psychosis resemble people with first-episode psychosis in terms of loss of synaptic density and hypoconnectivity (35). Young people coming to adolescent psychiatric services, however, are typically still far upstream of psychosis (usually several years to psychosis diagnosis) (10), which may be a more opportune time for intervention to prevent aberrant synaptic pruning. Doxycycline's effects on inflammatory-mediated synaptic pruning, therefore, are one mechanism that might impact on schizophrenia risk. As opposed to a direct neuroprotec-tive effect, it could also be that doxycycline impacts upon brain health as a result of its efficacy against one or more infectious agents that might play a causal role in the development of psychosis (36). Further research will be necessary to determine the underlying mechanisms. Doxycycline is sometimes used to treat acne vulgaris, in addition to treating acute infections, which means that the patients treated with doxycycline could have differed from the non-doxycycline antibiotic group in certain character-istics. However, our negative control exposure analyses did not support the hypothesis that the relationship between doxycycline and schizophrenia could be explained by characteristics related to acne treatment.
November 6, 2025 at 3:38 AM
chromatowski.bsky.social
If you too have caught some Election Day feels, hop on a phone bank to help people get to the polls after work!

Phone bank’s open til 9!

volunteer.zohranfornyc.com/phonebank-fo...
Zohran for New York City Phonebank sign up Gold and white text on blue background with a smiling photo of Zohran holding a phone to his ear. He’s in a suit sitting at a computer.
November 4, 2025 at 9:18 PM
chromatowski.bsky.social
Bsky FTW
Action Network City Council, we demand half a percent of the overall city budget for libraries! 1,456 Letters Sent Only 144 more until our goal of 1,600
October 27, 2025 at 10:18 PM
chromatowski.bsky.social
It’s POTS awareness day—a blood flow problem common after Covid.

POTS can be subtle—I often wonder how many people who feel rundown, anxious or distracted have this treatable condition.

Main criteria is heart rate going up >30bpm when going from laying down to standing—smthg you can check at home!
What Does POTS Stand For? POSTURAL: Related to the position of your body ORTHOSTATIC: Related to standing upright TACHYCARDIA: Increased heart rate SYNDROME: A group of symptoms
October 25, 2025 at 7:44 PM
chromatowski.bsky.social
The other is to use the International Consensus Criteria’s definition for PENE (post-exertional neuroimmune exhaustion), which characterizes the phenomenon in greater detail.
1. Marked, rapid physical and/or cognitive fatigability in response to exertion, which may be minimal such as activities of daily living or simple mental tasks, can be debilitating and cause a relapse. 2. Postexertional symptom exacerbation: e.g. acute flu-like symptoms, pain and worsening of other symptoms. 3. Postexertional exhaustion may occur immediately after activity or be delayed by hours or days. 4. Recovery period is prolonged, usually taking 24h or longer. A relapse can last days, weeks or longer. 5. Low threshold of physical and mental fatigability (lack of stamina) results in a substantial reduction in pre-illness activity level.
October 25, 2025 at 7:20 PM
chromatowski.bsky.social
Wow cool!

www.wfla.com/news/advice-...
Photo of peanuts with text reading: BLOOM CHILDREN Advice to feed babies peanuts early and often helped 60,000 kids avoid allergies, study finds FILE - An arrangement of peanuts is seen Feb. 20, 2015, in New York. (AP Photo/Patrick Sison, File) by: JONEL ALECCIA AP Health Writer Posted: Oct 20, 2025 / 06:27 AM EDT Updated: Oct 20, 2025 / 01:07 PM EDT
October 20, 2025 at 8:18 PM
chromatowski.bsky.social
As another non-speaking person (owing to a different disability), I’m so grateful to Jason for pushing back against the bias we so often face.

Adding alt text—
To the Editor: I am one of these so-called profoundly autistic people this article describes. I cannot utter meaningful speech, and as a result, I was branded for years as someone with an intellectual disability and an I.Q. of 40. All this time, however, I understood everything that was going on around me. I just could not show it to others because of my deranged relationship with my own body. I am concerned about the creation of a separate category, called profound autism, for those of us with the most severe disabilities. There are real differences between the sort of autism that I have and so-called Asperger's syndrome. But it does not help us at all to impose a hierarchy of lower and higher functioning. We need to figure out how to tap into the skills and insights of those of us who cannot talk, who make up anywhere from 25 percent to 40 percent of the autistic community, depending on the estimate. For me, the way out of this dilemma was learning to communicate by typing. I suddenly went from being seen as intellectually impaired to taking college classes. I was never low-functioning, and neither are my autistic brothers and sisters without the ability to speak. I was just misjudged and ignored, and I fear that my fate will be the fate of many others termed low functioning in this new schema. Jason Jacoby Lee New York
October 20, 2025 at 2:12 AM
chromatowski.bsky.social
Here’s a helpful poster on this subject from the Japanese government.
Public health poster Text reads: “Important notice for preventing COVID-19 outbreaks. Avoid the "Three Cs"! 1. Closed Spaces with poor ventilation. 2. Crowded places with many people nearby. 3. Close-contact settings such as close-range conversations Graphics then show an X above color-coded drawings of people gathering indoors (yellow), a big crowd (blue), and three people laughing close together (pink) More text reads: “One of the key measures against COVID-19 is to prevent occurrence of clusters. Keep these "Three Cs" from overlapping in daily life. It then shows a Venn diagram of overlapping yellow, blue and pink circles with an arrow pointing to the center that reads, “The risk of occurrence of clusters is particularly high when the "Three Cs" overlap!” In addition to the "Three Cs," items used by multiple people should be cleaned with disinfectant. 首相官邸 Prime Minister's Office of Japan 厚生 働省 MHLW COVID-19
October 19, 2025 at 7:11 PM
chromatowski.bsky.social
Completely agree.
no one who persists in believing the coping mechanism is instead the central problem should be allowed near ME research.
October 18, 2025 at 5:18 PM
chromatowski.bsky.social
In scientific convention, last author is usually the most senior person, arguably the most responsible. He’s also the corresponding author, so took responsibility for explaining the rationale to anyone who asks.

In this case all authors also declared they each made significant contributions.
Contributions B.W., L.C., B.D., S.L., R.B., K.C., B.S., A.M., I.P.F., J.S., N.M., M.H., and A.N. have all made substantial contributions to the drafting of this work. Corresponding author Correspondence to Avindra Nath.
October 18, 2025 at 4:46 AM
chromatowski.bsky.social
Here’s some of what I wrote when NIH sought public comment on the Roadmap in March 2024.

8/
March 10, 2024 at 4:10 AM Get serious about PEM The current proposals are not remotely adequate to address the significance of post-exertional malaise (PEM) to ME. Consensus science recognizes PEM as the disease's cardinal symptom and patients universally find it the most disabling of our symptoms, punishing every effort to carry out daily life. Yet the current Roadmap only bothers to mention PEM three times in a list of almost 300 research topics-and only then as subtopics of other, apparently higher priorities. This is gravely concerning about NIH's appreciation of how significantly PEM impacts those of us living with it, and it follows on a disastrous paper from NIH characterizing ME instead as a disease of diminished "effort preference". This is flatly at odds with the lived reality of ME: among the hundreds of ME patients I know, I have never once encountered one who didn't prefer to make a greater effort than PEM allows. This is genuinely remedial knowledge of ME: every ME patient, every single one, recursively does too much activity and has to make a major and conscious attempt to hold back in order to avert the cataclysmic physical effects of PEM, which deliver a deluge of multisystemic symptoms and sometimes a permanently lowered baseline. PEM is the symptom and frankly the disease itself; the aversion is only a (paltry) coping strategy. Focusing on the aversion will coping strategy. Focusing on the aversion will do nothing for ME patients except put us in harm's way: when an ME patient chooses a lower-effort task, it is because we have learned the hard way that greater effort incurs physical harm. The mechanisms behind that harm—the delayed onset of and prolonged recovery from symptoms disproportionate to the preceding exertion-is what we need NIH to study, and no one who persists in believing the coping mechanism is instead the central problem should be allowed near ME research. At this point, NIH is completely botching the study of PEM, and therefore the study of ME, since PEM is its cardinal symptom and dominates the lives of sufferers. The Roadmap will be a failure if this is not completely turned around.
October 18, 2025 at 4:38 AM
chromatowski.bsky.social
Anyone out there with ME/CFS want a @berlin-buyers-club.bsky.social phone case for an iPhone 17 Pro?

I have this extra one because I ended up exchanging my 17 Pro for an Air.

I’ll be happy to send it to you for free, I’d just love for it to get used!
Clear plastic iPhone case with a black backing. On it is a logo with a white frowny face and a red broken heart. Text reads, “I have ME/CFS. WE NEED TREATMENT.”
October 15, 2025 at 8:24 PM
chromatowski.bsky.social
Anyway, another day, another reminder to listen to organizers, not pundits.

Here are some Insta posts I’ve enjoyed lately.

A better world is possible.
Instagram post from Kentuckytenantunion A group of people all wearing matching black shirts with a white logo are gathered in front of a bus. Almost all are wearing masks and a few have raised fists. Instagram post from sunrisemvmtdc A group of people in a conference room. They are all wearing masks and leaping into the air. On a projection screen behind them text reads, “This is your opportunity to fight for a better world. And you don't have to do it alone.”
October 15, 2025 at 12:41 AM
chromatowski.bsky.social
I hesitate to elevate this comment—IME people aware of how uninformed it is are in the majority on Bsky—but worth observing that this coming from eg the NYT opinion page is part of why RFK has an opening to pretend to be better on Long Covid than liberals. They’ve made the bar that low.
Post from jamelle @jamellebouie.net Account Muted (and i think it is a demand that stems from fear more than a rational assessment of the threat environment) October 14, 2025 at 5:06 AM
October 15, 2025 at 12:34 AM
chromatowski.bsky.social
Not great Bob

(with alt text)
Tweet from tern @1goodtern Just think about it. Seriously. They told you that covid infection would not harm children, and now long covid is the *most common chronic illness in children*.
October 11, 2025 at 10:14 PM
chromatowski.bsky.social
Want to pull out this slide: people deserve to know there’s a growing mountain of evidence finding more Covid infections = more likelihood of being left chronically ill.

There’s a temptation to think that if you recovered ok last time, then you will next time too, but that’s not what the data say.
Researchers in Spain assessed over 190,000 participants, using data from a public health research network, in a study published in the journal Vaccines. They found that Long COVID prevalence was three to 10 times higher in individuals with three or more reported infections (about 600 people in the dataset) than in those with only one infection. They also found that the number of thrombotic events, including strokes and pulmonary embolisms, in people under 60 doubled from 2020 to 2024, in both people who were and weren’t vaccinated. The authors concluded that policymakers should prevent the spread of SARS-CoV-2 and that healthcare workers should continue wearing protective masks.
October 4, 2025 at 12:02 AM