And if you fear that you will now be at higher risk of death and complications because you cannot stay up to date on vaccines, please consider for a moment that that is the burden you’ve been happy to put on disabled and vulnerable people for several years.

If you are angry, as you should be, that restricting access to the vaccine will make covid worse and more dangerous, please start wearing a mask, which actually does a significantly better job of preventing transmission in the first place.

The compounding pharmacy that used to prepare my thymosin alpha-1 is no longer doing it and my usual compounding pharmacy doesn’t offer it. Anyone with #LongCOVID or #MECFS and at TA-1 script have a compounding pharmacy that offers it? If so, details pls!

#Disability is the only universal marginalisation, making up 1/5 to 1/4 of the world's population, yet so few of our stories are published! Help me uplift disabled & chronically ill #writers by supporting & submitting to this #anthology ❤️‍🔥 Guidelines: shorturl.at/jges6 Deadline: July 31st 2025.

I’m always so tickled when people go “ugh when did [insert thing here] become political?” And it’s like, sorry babe, but as long as groups within society use the state as a cudgeol to decide who has what rights and how collective resources are allocated, most things will be political.

🚨 🚨 🚨 Really important action for #LongCOVID community and allies! Call or email your federal legislators to let them know #NoLongCOVIDcuts! This condition impacts millions of Americans, many of whom are severely disabled with NO treatments!

Sprained my ankle. Time for all these peptides I’ve been shoving into my body to do something miraculous.

As we approach the 4th and 11th anniversaries of the war that Russia started, it is important to remember that this has always been a blatant land grab that turned genocidal as soon as they realized Ukrainians do not want to be Russians

New Lancet study shows extremely low, 2%, recovery rate from Long COVID. However, those who considered their Long COVID resolved were still in worse health than those who never had Long COVID. www.thelancet.com/journals/lan...

Anyone in the #LongCOVID or #MECFS universe tried the antimicrobial and antiviral peptide LL-37? Would love to touch base about folks’ experiences and dosages.

Regeneron is recruiting for a phase 2 RCT of REGN7544 (an NPR1 antagonist mAb) for POTS. They’re seeking 81 patients in Pasadena, CA; Carlsbad, CA; Nashville, TN; and Clearwater, FL clinicaltrials.gov/study/NCT065...

It’s wild how much calmer my nervous system feels when I’m on my period. I wish I knew what was happening in my body that makes it so and how I can reproduce it the other three weeks of every month. 🤔 #LongCOVID

Unexpected niche beat for @melissagiragrant.com: Covering the myriad protests happening right now despite claims on social media that 'no one is protesting.'

Anyone with #LongCOVID, #MECFS, or #ChronicLyme tried supportive oligonucleotide technique (SOT) for EBV, CMV, HHV-6, and Lyme and its co-infections? My functional medicine doc does it in his office and I’m considering it to try to shift symptoms. Would love personal anecdotes!

Have a tonsil and sinus infection. Happy Valentines Day to me from AmoxClav. 😥

Incredible: Russ Vought’s daughter has cystic fibrosis and benefits from a “miracle drug” made possible by the National Institutes of Health—an agency Vought now aims to gut as part of the Project 2025 attack www.motherjones.com/politics/202... Scoop from @motherjones.com’s @metrauxjulia.bsky.social

I’m on day 5 of Sofosbuvir. The first two days I only took one pill, but have been taking 2 the other two days. Very up and down but the ups are very up. My nervous system feels very calm on those days.

Lmao at the idea that DOGE found fraud but an accounting firm didn’t. Like I don’t have that much faith in the Big 4, but I have enough faith that they’d be able to find fraudulent debt obligations…

Reminder that protecting each other from illness and potential disability/death when the people in charge actively want us dead is actually punk as fuck. Simple disease prevention is community care. It is resistance. Please mask up, especially at protests.

If you work for the federal government and are tempted to take Musk’s “buyout” offer please know that you’re never going to see that money.

Thing you can do, action you can take: Register for our Congressional Medicaid Advocacy Webinar on 2/10 @ 4PM ET MAGA wants massive cuts to Medicaid, resulting in catastrophic coverage losses. Learn how to advocate for Medicaid with the legislative staff of a Congressperson or Senator. Reg link ⤵️

Hey, guess what has suddenly disappeared from the HHS website? Any mention of this $306M investment in pandemic flu preparedness that was approved in the last days of the Biden administration. Not DEI. Not USAID. Our surveillance & response program around H5N1.

“These first two weeks of Trump’s new term and the extensive executive orders removing nearly every right I have as a trans American have been by far the worst in all my professional years.” In The Handbasket’s first guest piece @katelynburns.com explains the toll on trans journalists right now:

The people who rise to lead now will be the leaders. And the people who do not never will.

Lowkey love that because there were four new variables in play during this two day POTS/MCAS flare, the only way I can make sure it wasn’t the new medication is if I wait a couple weeks for my body to calm down and then try again in the *hopes* that my body doesn’t react violently again. No notes.

Conspiracy theorists have been worrying about Big Tech tryin got microchip them with vaccines when they really should have been worrying about Big Parma.

hey question, is this bad?

I feel this so strongly, but it’s hard as a disabled person to have much faith in the Left caring and acting to make a better world when all of their actions have explicitly done everything to keep people like me out of their spaces and confined to my home or risk further disablement from COVID.

Becoming chronically ill in America #LongCOVID #MECFS

Building a massive detention center in a place not subject to constitutional protections where they intend to hold people indefinitely feels very concentration campy. www.usatoday.com/story/news/p...

Everything is shit but the Sofosbuvir I ordered from abroad is almost here so once I get back to baseline post-rapamycin my doc and I can start my antiviral combo!!! I know truvada and Sofosbuvir don’t work for everyone, but they’ve worked for some and I just really need a #LongCOVID win these days.

Doctors when you ask them how a drug prescribed off-label works #LongCOVID #MECFS

Dave Lucas, “Love Poem for an Apocalypse” from the collection “Resistance, Rebellion, Life: 50 Poems Now”

I think I’m going to keep at it with rapamycin but get a pill cutter for tiny pills and cut it into a quarter so start at 0.25mg instead of 1mg. Will skip at least this upcoming dose to get it out of my system and then restart in another week or two once I’ve returned to baseline

Complex care patients are begging for help in Canada - who is going to help them? It's inhumane to leave people stranded, without care.

If anyone happens to need it this week for...reasons...this is the best graphic on the complexity of human sex determination I've ever seen. I use it in an undergrad course on gene regulatory mechanisms. Shoutout to @unamandita.bsky.social! www.scientificamerican.com/article/beyo...

So I think rapamycin is fucking me up. Took second dose today and I just fell off a cliff. My POTS is worse. I think it’s also messing up how my body processed magnesium. Will skip next week’s dose and see if I get back to baseline. #LongCOVID

just fucking zooming in on this like oh there’s a pabst can for blue velvet, there’s cheetos for the fablemans, just a whole language of what people valued most and how fans talk to each other.

"With David Lynch, I feel like he didn't find the switch. He went right ahead and installed one of his own, flicked it on, and left a light burning somewhere in my core that'll never go out." — @awalrusdarkly.bsky.social on the power of David Lynch popheist.com/your-first-d...

Learned yesterday that my husband has never seen Twin Peaks and now I’m so excited to introduce it to him and watch him watch it but also am so deeply jealous he gets to watch it for the first time.

This exposé on Neil Gaiman is truly horrifying. I appreciate that the journalist included context from BDSM-knowledgeable folks to note that the encounters described by the victims were actually not simply kink that the average Joe just didn’t get. archive.is/2025.01.13-1...

Being a medical guinea pig is so fun. Will this new intervention suppress my immune system or help regulate it? Throw it down the hatch and let’s find out!

I get asked a lot by physical therapists how they can get involved with their communities, and the LA fires have pointed out the importance of evacuation planning that considers the needs of people with disabilities. Disability shouldn’t be a death sentence. That seems basic. Let’s start there.

These teenagers and young men — 95% of whom are Black, Latinx, or Filipino — earn between $2.20 and $4 per hour, plus an additional $1 an hour when they’re actively fighting fires, according to the DJJ. ⤵️

Greenland and Panama are distractions. Trump is still attempting to install a Russian infiltrator to oversee America's intelligence apparatus and a deranged sycophant who has vowed to weaponize this apparatus against Trump's enemies as FBI Director. Call your senators.

Me whenever someone with #LongCOVID or #MECFS tells a horror story about being mistreated and/or disbelieved by a doctor. Name names!!!!

So I’m on day 11 of oxaloacetate. I went from 500mg BID to 1000mg BID quite quickly as I was not experiencing any negative side effects even though I take it on an empty stomach. My remaining brain fog has essentially disappeared, which is quite exciting.