Romatowski

@Romatowski@mastodon.social

Editor, translator, filmmaker. Recovering academic. Leftist. Perfumista. ME/CFS, MCAS, POTS. EN/FR. She/they. DMV.

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Romatowski, to mecfs

Today leading advocacy orgs and researchers sent a letter calling on President Biden to include and related diseases like , and in the next federal budget.

Now there’s an option for patients and allies to add our names well—super quick way to lend support!

Please sign, please share!

https://patientresearchcovid19.com/advocacy/letter-to-president-biden-fy25-budget/

Romatowski, to mecfs

Want to flag a Long Covid study in need of healthy controls—I’m told they’re having trouble because healthy participants keep getting and often are no longer so healthy afterward 🫠

Which is a great reason all of us should want to push LC research forward—and you can help here entirely from home! Just sign up and the surveys will be emailed to you!

Also open to folks w/diagnoses of and/or !

Thanks so much for considering y’all 🙏🏻

www.meaction.net/epi

Romatowski, to mecfs

Terrific story from @brianvastag this morning on the patient advocacy that led to a breakthrough in the recent mitochondrial study from NIH, which may also have applications in .

The piece also includes the clearest explanation I’ve seen of the study’s findings. Thanks Brian!

Unpaywalled: https://wapo.st/3Pem0G4

upol, (edited ) to mastodon
@upol@hci.social avatar

UPDATE: WE GOT PAXLOVID! Your inputs worked. Thank you!!

friends, I need urgent help:

wife tested positive for covid. It's bad. Online Doc refused to prescribe citing she's <50yrs. Said LongCovid isn't real and pretty much gaslit the thing.

PCP offices are closed.

CVS w/o prescription requires labwork that we don't have handy.

The blockers in the US are systemic.

In GA, how might we get Paxlovid? Any ideas?

Romatowski,

@upol I’m so sorry. Does this mean you’ve already exhausted the Test to Treat options near you? https://aspr.hhs.gov/TestToTreat/Pages/default.aspx

I also wanted to float the idea of metformin, but I recognize that also requires a cooperative doctor. https://www.cidrap.umn.edu/covid-19/common-diabetes-drug-shown-prevent-long-covid

Romatowski,

@upol I’m so relieved you got Paxlovid and so sorry for what it took to get there—I felt my chest tighten just reading your post. It’s unconscionable the government is stranding people like this. I really hope your wife is back on the mend quickly, and you stay safe as well.

Romatowski,

@upol It’s such an important point—it just does not have to be this way.

Romatowski, to random

US folks: hoping this won’t apply to any of you but in the event you get unlucky with and might be willing to contribute to research, Scripps has a study seeking participants w/in 48 hrs of a positive Covid test. All sent to your home. https://redcapstsi.scripps.edu/redcap/surveys/?s=J83NTFYFHAJTXELY&utm_source=eMed&utm_medium=Twitter&utm_campaign=Mina&utm_id=eMed+Pax+Study

Romatowski, to Toronto

Whew.

Detail from a piece by Cleopatria Peterson, currently on view at Fort York Visitor Centre in in a show called “Transforming Grief: Loss & Togetherness in -19”.

Romatowski, to mecfs

Hey folks: The Today Show has a nice personal essay series w/health as one of their themes and on the other site the editor Rheana Murray is seeking pitches. ~1000 words, $350 fee. Contact: TODAYEssays@nbcuni.com

Seems like a great awareness opportunity. You can check out examples at https://today.com/essays

And to add my personal encouragement: you should do it! :)

Romatowski, to random

US folks: Hantover is having a sale on Gerson duckbill N95s with boxes of 35 individually wrapped masks going for 50 cents! Shipping adds on but I just got 700 masks for $43.

Scuttlebut is that they’re trying to clear their warehouse so I worry come winter N95s will be a lot harder to come by/more expensive. Good time to stock up, to share now or later.

https://www.hantover.com/cgi/hnt.wsc/product.htm?p-item-num=47099&e=yes&fbclid=IwAR3BGPR2R5zPmei1ZSEqwdyAbzKde0XVjMFKhwTjI5iinzPiF4qExWPBh4k_aem_AVhDcwxD0oypg5I5PI--Qr1ztCSohQAYaliLunzajvH7Ohs7LXgagXETK5wzQuxEdac&mibextid=Zxz2cZ

Romatowski,

@seldo Oh sad. Thanks for letting me know, I’ll update.

Romatowski, to mecfs

As so much of media and government badly fails to communicate to the public what puts on the line, I greatly appreciated this new Ed Yong piece detailing how radically different “fatigue” in and is from anything healthy people would recognize by that term.

Here’s an unpaywalled link:

https://archive.is/sBL8T

Romatowski,

Ed also draws on historical work on capital’s attempt to recast fatigue as a psychological problem for individuals to deal with, letting employers off the hook for respecting workers’ physical limits.

I’m unhappy to report that in the present day we have some leftists carrying water for the bosses on that deeply neoliberal move 🙃

misc, to random
@misc@mastodon.social avatar

Just emailed my local newspaper @cambridgeday, asking them to use their Mastodon account. Strike while the iron is hot, I say!

Romatowski,

@misc @cambridgeday This is great, I would love to have Cambridge news on here!

dell, (edited ) to random

Are there subjects or topics you feel are crucial but sparsely read because of the way they’re presented in the press? Not interested so much in what they are as how you feel they might be better represented to generate interest. What tactics or liberties would you approve a writer take to help your very important but relatively boring topic be (forgive me) a bit more sexy to the public at large?

Romatowski,

@dell I am preaching to the choir director here but writers not taking a position is a great way to kill good subject matter. There’s some really scandalously bad science going down around Long Covid and ME/CFS but it gets bothsidesed to the point of impenetrability, instead of going straight to the harm (which is: people literally being left to starve to death in hospitals.)

Romatowski, to random

I just found out the commercial air filters my public library bought cost $2000 and don’t work as well as a $100 . I mean still better than no filter but 😭😭😭

We gotta get this knowledge into our communities! So in case helpful to US folks, some links:

These filters test really well and are a good deal:
https://www.texairfilters.com/4-filter-corsi-rosenthal-box-merv-13-filters/#5603

This is the standard fan: https://www.acehardware.com/departments/heating-and-cooling/portable-and-exhaust-fans/household-fans/63858

This is a one-page illustrated guide to assembling: https://corsirosenthalfoundation.org/wp-content/uploads/Build-a-Box-Eng-1.pdf

BYO duct tape!

Romatowski, to random

Poster by artist @ schmutzparty on the birdsite. Hi-res file available for free/pay-what-you-want on Gumroad: https://schmutzparty.gumroad.com/l/dhuna

dell, to random

image/jpeg
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Romatowski,

@dell wait what is happening, is this still the Brazilian scam artist or different alarming content 😅

Romatowski,

@dell oh shit. regret not having seen it. he is extraordinary

Romatowski,

@dell OH the Gilliam film. Yes fair. Wait have you seen Lost in La Mancha

kevincollier, to random
@kevincollier@mastodon.social avatar

A better link might be out there — let me know if so! — but here's the official stream for the Senate Judiciary AI hearing: https://www.judiciary.senate.gov/committee-activity/hearings/oversight-of-ai-rules-for-artificial-intelligence

Romatowski,

@kevincollier 💯 I see a terrifying number of people trusting its medical advice. The consequences for people in vulnerable positions (like the many many people in the US who have a hard time accessing good medical care) are so scary.

Romatowski, to random

Please enjoy this profile of Hollywood Teamsters boss Lindsay Dougherty.

https://www.lamag.com/citythinkblog/lindsay-dougherty-the-new-head-of-the-hollywood-teamsters-first-female-boss/

Romatowski, to random

Romatowski, to science

Hey folks—as well as people who love us 💛

Open Medicine Foundation has a new registry to help researchers find participants for infection-associated disease research. Goal is 100,000 signups—seeking healthy controls as well as patients!

Super quick and you can indicate what you’re open to (studies from home vs anywhere, etc.)

Recruitment often really delays research—so grateful to everyone willing to help out 💛

https://www.omf.ngo/signup-studyme/

Romatowski, to random

On May 12–the day after the US Public Health Emergency will lapse— & are holding a protest at the Washington Monument in DC to demand action on & related diseases.

Inspired especially by the January protest in Germany, it will have rows of cots w/pillowcases decorated by patients & allies.

Details on sending a pillowcase: https://millionsmissing.meaction.net/pillowcase-decoration-project/

And more ways to participate: https://millionsmissing.meaction.net/protest2023/

Romatowski,

A few more pillowcases, including designs some have had screenprinted and sent, especially if unable to write themselves.

More details on the May 12 protest and a range of ways to participate:
https://millionsmissing.meaction.net/protest2023/

A photo of a white woman resting on a pillow. Text reads Missing Carrie Long COVID (2020) which triggered - Myalgic Encephalomyelitis Missing from: - being the mom | want to be with my 5 yr olds - my career in community health -my friends and family - yoga, hiking, travelling
A red banner has says, “MEAction Equality, Treatment & Research for M.E.” Below it is photo of a White woman in a wheelchair on one side and on the other text reading, Missing: Environmental Scientist, US EPA Disabled by ME Abandoned by NIH Ignored by FDA Exponentially Worse by Long Covid: >30 Mill Americans
A woman with short hair smiles and holds up a pillowcase handwritten with “Disability Justice Now” in large letters along the bottom edge, “Debra Gluckheimer 2010” along the short end, and a text box in smaller writing, “Let us dream together of a time when all of our access needs are met with unconditional love. A future when each of our bodyminds will be celebrated and caring for each other will be sanctified. We will leave no one behind as we roll, limp, stim, sign and create the living future that we all deserve. - Rabbi Elliot Kukla”

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