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!
Important thread for understanding ME/CFS: what is the difference between PEM (post-exertional malaise) and PESE (post-executional symptom exacerbation)?
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.
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.
Something to remember whatever the illness they’re telling you only the weak need worry about.
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.
Absolutely. That’s a big part of what was on my mind when I posted this the other day.
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 :(
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!
#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.
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.
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...
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.
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.
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:
In particular it’s an explanation of vaccines’ unique and very large potential to reduce COVID population prevalence.
Accounts I’m doubtful are necessarily organic are pitching in too. Saw people arguing with this person which.
#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
To illustrate—that first reply from the account I shared above is a total non-sequitur to the advocacy post it responded to.
I have some #NEISvoid friends following this account so just to say, I would bet $5 it’s a bot—specifically one set up to sell an app.
Sorry to keep pestering you, if the feeds become too much of a hassle to maintain I will def understand!!
My libraries don’t seem to have an audiobook for it, but it looks like Apple Books has it for $3.99
Helllooo just a flag since I continue to love this feed so much!