C.H. Romatowski

@chromatowski

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 severely ill (FUNCAP 0.9). No unsolicited advice please!

887 Following8,865 Followers5,628 Posts

YouTube Bluesky

Is this your profile?Claim it and chromatowski.dirty.social is yours.Claim profile

C.H. Romatowski@chromatowski· 3d

Important thread for understanding ME/CFS: what is the difference between PEM (post-exertional malaise) and PESE (post-executional symptom exacerbation)?

Four tweets from Todd Davenport

PEM ‡ PESE
That is all. Carry on. ☺️

I took my dogs out for a walk today. My arthritic hip is really acting up now. That's PESE. It came on right after activity it will improve again with rest (until tomorrow, when the dogs want to go out again 😅).
No delay, no prolonged recovery, and no unusual symptoms. Not PEM.

The point is that a whole host of health conditions are characterized by PESE. It isn't specific for ME and ME subtypes of other diagnosable health conditions. Enter PEM-the abnormal recovery response apparently driven by multi-system bioenergetic impairment. It's its own thing.

Confusing PESE and PEM remains an obstacle to recognizing ME, especially against the backdrop of other health conditions that have fatigue as an important component. This remains a challenge to making clinical decisions minimizing harms and creating coherent cohorts for studies.

C.H. Romatowski@chromatowski· 4d

The combination of this historical neglect and the profound debility of Severe ME make for a scary situation: in desperate need of social solidarity à la breast cancer 5ks or concerts for HIV/AIDS, but instead so sick as to fall out of public view entirely, confined to our homes or beds.

A cartoon from IG: illustrating_ME

M.E.
HOW IT CAN SHRINK ONE'S
LIFE BITS BY BITS

The first panel BEFORE ME shows a building labeled work, one labeled cafe, one labeled party, one labeled gym, as well as a house, a mountain with a campground, and an airplane flying above labeled travel.

MILD ME however only has a house and the work building.

MODERATE ME only has the house

SEVERE ME only has a bed

And the VERY SEVERE ME panel is blacked out.

Kornelia Paulsen 2023

C.H. Romatowski@chromatowski· 4d

That makes for more than 2M people disappeared from their communities by a disease that for decades has been NIH’s most underfunded, relative to its burden on the US population. This neglect has left ME with no FDA-approved treatments, and almost no existence whatsoever in the public consciousness.

Chart entitled NIH research funding for ME/CFS is just 1% of what its disability burden warrants, with Long COVID also heavily underfunded at 14% of commensurate levels

NIH Funding Per Disease as a % of YLD-Commensurate Funding (FY22-24 Average)

ME/CFS is at 1% of its funding commensurate with disease burden, below:
Migraines 3%
Long Covid 14%
Anxiety Disorders 17%
Schizophrenia 27%
Eating Disorders 28%
Depression 31%
Asthma 34%
Diabetes 43%
Rheumatoid Arthritis 48%
Endometriosis 58%
Multiple Sclerosis 122%
Epilepsy 138%
Autism 163%
IBD 196%
Parkinson's Disease 326%
Alzheimer's Disease 575%
Macular Degeneration 685%
HIV/AIDS 2603%
Down Syndrome 2675%

Data Sources: Bonuck et al. (2026), "Long COVID disability burden in US adults". Funding: NIH RCDC (FY22-24 average). Disease burden: IHME GBD 2021. Long COVID prevalence: CDC Household Pulse Survey.

Notes: Long COVID funding shown is NIH RCDC only (14% of YLD-commensurate). Including the one-off $1.15B RECOVER emergency appropriation (2021) would raise Long COVID to ~53% of YLD-commensurate.

C.H. Romatowski@chromatowski· 9d

Something to remember whatever the illness they’re telling you only the weak need worry about.

A screenshot of Fauci saying, “even though you'll find the vulnerable will fall by the wayside,”

C.H. Romatowski@chromatowski· 10d

Another large study found vaccination can provide kids with partial protection from Long Covid, but it wears off over time (61% effective at 6 months but less than 11% at 18 months), so needs regular updating. recovercovid.org/publications... But only 1 in 10 kids got the 2025-2026 Covid shot.

RECOVER
Researching COVID to Enhance Recovery
Menu

…researchers did a study to look at how well vaccines work in protecting children, ages 5-17, against Long COVID. They studied data fro a group of more than 1 million children.
The vaccine was 42% effective in lowering the chance of getting Long COVID in kids ages 5-11 and 50% effective for kids ages 12-17. The vaccine works best against Long COVID within the first 6 months of getting it. After 6 months, it does not work as well, so getting the vaccine every year is important to prevent Long COVID

COVID-19 Vaccination Intent in the United States

Weekly intent for vaccination and cumulative percent of adults and children vaccinated with the 2025-26 COVID-19 vaccine. Refer to data notes for more details.

Chart showing children who:

Received vaccine
Definitely will get a vaccine
Probably will get a vaccine or are unsure
Probably or definitely will not get a vaccine

As of May 23, 2026, only 9.8% had received a vaccine. 3.2% say they definitely will, 23.2% say probably or unsure, and 63.7% say probably or definitely won’t.

C.H. Romatowski@chromatowski· 14d

Absolutely. That’s a big part of what was on my mind when I posted this the other day.

Two posts from me, three days ago:

The current state of disorganization in the ME/ CFS and Long Covid communities is such a huge problem on so many levels and I am beyond frustrated at my sense of impotence about it.

There's just a lot of unconstructive sniping that goes on and my dearest wish is for folks to be offered more constructive outlets for that energy, but it takes a lot of work to build those opportunities, in a "it takes money to make money" kind of way, except with bandwidth instead of money.

C.H. Romatowski@chromatowski· 26d

It’s unbearable. At the time I was so ill, I couldn’t use a phone or computer but I was desperate enough to ask my family to log in for me, and I whispered this message for them to post in hopes some of my journalist friends would pay attention. They did not :(

Two tweets from me on March 30, 2020

The press should be asking public officials whether they expect a rise in #MECFS cases following the Corona virus and what they plan to do about that long tail of this public health crisis.

ME already affects almost 1% of the population
(2.8M Americans) an onset typically follows a viral infection. So that number may rise precipitously.
Meanwhile there are 12 ME doctors in the entire country.

C.H. Romatowski@chromatowski· 26d

Fucking heartbreaking.

Reddit post from r/ZeroCovidCommunity
u/Sea_Mood_8855 • 23h

I just got long covid

I'm so angry about this. I'm 14 and have been advocating with my parents to let me start masking but i was never allowed to because of how it made me look sick. It got so bad my mom even threw all my masks out.
Then in March I tested positive for COVID which I only isolated w for 3 days and every day since I felt horrible.
Pain in my chest, out of nowhere nosebleeds and also brain fog. Two nights ago I was diagnosed with Long COVID and now all of a sudden I've been allowed to start masking but not vaccinated so idk. I only tried protecting myself and now I have LC. I feel like my life is ruined, what should I do and what precautions should I start taking

C.H. Romatowski@chromatowski· May 12

Thank you @aoc.bsky.social for calling for the biomedical research DOGE cut to be not just restored but expanded: “Research saves lives. We HAVE to get these studies back online and expand this important work.” YES: let’s #TripleTheNIHBudget as part of a New Deal for Health!

Screenshot of an AOC Instagram story, reshared from Morehouse School of Medicine. She is shaking hands with scientists and has added text reading:

Morehouse scientists are working on everything from genomics and prostate cancer to partnering with local Atlanta women to study how environmental exposures can show up in placenta tissue.

The DOGE cuts in NIH funding have set back American progress on medical breakthroughs across the board, including in maternal mortality.

Black women are more than twice as likely to die in childbirth, and the scientific and medical progress Morehouse and other institutions across the countrywere making on this issue were singled out specifically for cancellation.

Research saves lives. We HAVE to get these studies back online and expand this important work.

C.H. Romatowski@chromatowski· May 9

#NEISvoid poli ed: The Appropriations process is important for action on Long Covid, ME, etc because Congress is passing fewer and fewer laws. The budget is one of the only bills that does get passed (sooner or later), so shoehorning something into it is often the best shot at Congressional action.

WSJ chart titled Congress Is Struggling to Do the Bare Minimum

Laws passed by congress

It’s more than 600 per session of Congress for the Nixon, Ford and Carter eras, but has been trending down to around 200. The current Congress hasn’t even passed 100 laws.

C.H. Romatowski@chromatowski· May 4

As someone with a few friends who are severely affected, it’s been heartbreaking to see the near-consensus refusal even to begin scientific inquiry into why they are so very sick, let alone offer them any help. Very sad that it means so much simply to see their plight acknowledged in print.

$level. However, after COVID-19 vaccination, a small fraction of people develop PVS, which is a long COVID-likesyndrome characterized by a range of multi-organ symptoms. The cause of PVS is unknown. Notably, some people with PVS become severely ill, homebound or bedbound for years. Like any other vaccine,$

C.H. Romatowski@chromatowski· Apr 16

DC folks: Janeese Lewis George @janeese4dc.bsky.social, who is running for Mayor, is having an online disability justice listening session on Friday 4/24. Would be a great opportunity to raise Long Covid, ME/CFS and related issues! Sign up: www.mobilize.us/janeesefordc...

C.H. Romatowski@chromatowski· Apr 8

Thank you so much for speaking out about this—it resonates so closely with the concerns I had when the pandemic was first breaking out. It’s depressing that six years on, we’ve made so little progress in addressing this crisis.

Two tweets from me on March 31, 2020.

The press should be asking public officials whether they expect a rise in #MECFS cases following the Corona virus and what they plan to do about that long tail of this public health crisis.

ME already affects almost 1% of the population
(2.8M Americans) an onset typically follows a viral infection. So that number may rise precipitously.

Meanwhile there are 12 ME doctors in the entire country.

C.H. Romatowski@chromatowski· Apr 4

That person is definitely trolling

Post from jon-kay.bsky.social @jon-kay.bsky.soc... • 20h just heard this AMAZING podcast guy's name was jesse singal

C.H. Romatowski@chromatowski· Apr 1

Right, that it may happen on a delay is one of the features for PEM/PENE, per the International Consensus Criteria for ME, but post-exertional symptom exacerbation as far as I understand it just means that symptoms get worse—it does not specify the timing, either for the onset or the duration.

Table 1. Myalgic encephalomyelitis: international consensus criteria
Adult and paediatric • clinical and research
A. Postexertional neuroimmune exhaustion (PENE
pen'-e): Compulsory
This cardinal feature is a pathological inability to produce sufficient energy on demand with prominent symptoms primarily in the neuroimmune regions.
Characteristics are as follows:
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 24 h 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.

C.H. Romatowski@chromatowski· Apr 1

I personally don’t think all LC is ME but I’m not sure it’s right to cite this paper for that claim, since it explicitly argues in the opposite direction:

Significance
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and long COVID are debilitating conditions that currently lack FDA-approved treatments. This study analyzes patient-reported outcomes from over 3,900 individuals, identifying treatments perceived as beneficial and uncovering symptom-based patient subgroups with distinct responses to therapies. Notably, there is significant overlap in the symptom profiles and treatment responses between ME/CFS and long COVID, suggesting that they may share underlying mechanisms. These findings…

C.H. Romatowski@chromatowski· Mar 30

In particular it’s an explanation of vaccines’ unique and very large potential to reduce COVID population prevalence.

Two posts from Prof. Michael Fuhrer @michaelsfuhrer... • 11mo

There's no reason to think that vaccines can't be just as effective against today's variants, if well-matched. It's quite plausible that yearly vaccination could replace on order 30-50% of infection-acquired immunity to reinfection...

34/

...which means not only protecting the vaccinated individual, but, if everyone were vaccinated, reducing population prevalence by 30-50%.

35/

C.H. Romatowski@chromatowski· Mar 25

Accounts I’m doubtful are necessarily organic are pitching in too. Saw people arguing with this person which.

Twitter account called sean?
@usulsean

3,687

Location: Hell
Joined March 2024

78 Following
20 Followers

Not followed by anyone you're following

C.H. Romatowski@chromatowski· Mar 21

#NEISvoid this could be us 🥺 Here’s the terrific article Peter linked to, detailing the advocacy efforts regular people like Cole are leading: www.timesunion.com/capitol/arti... #LongCovid #MECFS #POTS