C.H. Romatowski

Check out the whole series!

#NEISvoid

I really recommend ME and LC folks take every opportunity to learn from Dr. Rowe. And I expect this will have a ton of info that relevant to adults as well as peds.

Long-COVID research just got a big funding boost: will it find new treatments? The German government has committed half a billion euros for research on long COVID and other post-infection syndromes.

Nature: 'Long-COVID research just got a big funding boost: will it find new treatments?'

'The German government has committed half a billion euros for research on long COVID and other post-infection syndromes.'

By Michael Marshall

www.nature.com/articles/d41...

Once you are symptomatic it’s too late to protect those around you, let alone yourself.
Mask early, mask often.

A purple and blue flyer that says Help make california colleges safer for survivors! your voice can create change! join a voluntary UCLA research study! below this it says: survivors+allies, a student org, is leading a research study across CA colleges and universities to advocate for better support for survivors of sexual violence. take a 20 minute online anonymous survey! if you are a current student at a uni or college in CA and 18 years or older. theres a qr code to scan. theres also a link to take the survey. besides a picture of a purple owala water bottle it says 40 participants will randomly be selected to win a bottle. thats 1 in 40 chance of winning

Last call for UC, CSU, and California community college campus affiliates!

We are trying to recruit our last couple of students for our sexual violence study. It is open to all students (grad & undergrad) 18+. Link to survey in thread!

Please share w/ ur networks! Survey will close Jan 1.

Photo of me coming off an elevator in a black sweatshirt that says "chinga la migra"

Photo of me leaning against a threshold in a black sweatshirt that says "chinga la migra"

This holiday season, make a statement with some great @disabilitylab.bsky.social merch. #chingalamigra

Thanks so much!

Independent confirmation of just how quick!

It’s a prescripted message, so all you need to do is sign.

Ah thank you so much!!

1-min action item!

At the end of 2026, Medicaid recipients will be subject to work requirements unless deemed “medically frail”. This is very dangerous for people w/ME (including those w/Long Covid ME) who get sicker from exertion.

Tell HHS to exempt pwME and LC: actionnetwork.org/petitions/fr...

And if you’re not new, please consider contributing! The site badly needs more people adding to and fact-checking it.

If you need help getting started, let me know, happy to try to help.

#MECFS #LongCovid

Any #pwME use Lumia?

Do you find it helpful?

How does it compare to other wearable tech you tried?

#MECFS #Dysautonomia #POTS

Great list.

Jfc

Lol any chance you want to tell me where to go?? I could use some direction!! 😂

Are you a #pwME / #pwLC / #NEISvoid, desire to be involved in advocacy or community in some capacity, but unsure how to get started or where to go?

Please feel free to reach out / DM me anytime if applicable [asterisk being for US residents]

#MillionsMissing
#MyalgicEncephalomyelitis
#LongCOVID

It's so interesting to me how Makary conspiracy code switches when he talks to podcasters vs national news. This is the kind of stuff MAHA hears from the FDA Commissioner.

I've been saying this for a year now: the Democrats have missed a gigantic political opportunity--and, at this point, have failed in an ethical obligation--to create a shadow-government health department that dispenses medically accurate information, guidance, and advice.

Dr talking to patient. Dr says "all your tests have come bacn normal". Patient replies "but have you tested for the disease i actually have?"

If a patient is suffering with unexplained symptoms, the right test(s) hasn't been done!

Perfect 🙏🏻🙏🏻

I wonder also about reading selections which I could do, I just wouldn’t know which to pick. I guess I could look for which chapters were published as articles first lol.

I am intrigued; I did try a kind of similar thing reading a bunch of academic reviews of Impure Science to get the gist (an old grad school trick lol) but the book is SO long that that still only gave a very high-level summary…

😭😭

That’s SO nice you guys to offer, yall are too much 😭😭 it would be like 40 hours!! Unfort w/my sensory stuff I prob do need a professional recording but I am immensely touched by the offer.

Oh my gosh, that’s INCREDIBLY generous of you 😭 Unfort yeah my auditory stuff is also pretty sensitive, I do struggle to listen to podcasts that aren’t professionally recorded but I can’t tell you how much I appreciate the offer, that’s SO KIND thank you!!!

Thank you 🙏🏻 Really wish university presses saw accessibility as more central to their mission.

(Unfortunately for me it’s also 500 pages with no audio book.)

I hear the book Impure Science is excellent and I just assume it covers them, or at least their first incarnation as an ACT UP working group, called Treatment and Data.

Sure thing! I imagine they might even be amenable to talking to people in the LC/IACC world, altho I think their history is fairly well documented so plenty of homework one could do first

1- no chronic disease has been ended
2- cutting aid means no food of any sort
3- haven’t found a thing
4- meh
5- you just scaled back a cancer preventing vaccine

These fuckers 🤦🏻‍♂️