vee.soy

Haha I can empathize I’m just getting out of a bad pem flare myself

I’m not sure if I understand your thoughts, sorry. The trials I’m talking about are ones looking for a biomarker and/or treatment for long COVID.

And thank you.

I’m speaking here about PEM as a byproduct of the trials themselves (going to the trial site, doing the tests). Not claiming that it’s being left out of the research all together.

I would like to reiterate that the person is the most important part of the research.

For example: PEM is seen as an almost inevitable byproduct that’s worth the risk, but in many cases there are different options that could make the study more accessible and less harmful. These options however are said to impact the accuracy of the data, or lead to discrepancies. How do we proceed?

Okay kind of cool news, I got invited to present at the September FNIH RECOVER TLC workshop. Rn my idea is to take us back to the core of research ethics and to talk about how people with severe LC require a different framework for thinking through risk vs benefit in research.

It’s way more than i imagined I’d get to so ☺️

Just my left arm tho lol

My Bluesky friends who have ME only:

Yesterday i realized I gained enough muscle back in my arms to flex! I also crawled a tiny bit!

😱

How is it possible that it’s about to be Monday AGAIN tomorrow?

Pentagon Budget Tops $1 Trillion. Now What? How annual U.S. military spending broke the $1 trillion mark, and my legislative proposal that rescinds the Big Beautiful Bill’s $156 billion in Pentagon spending and sends people $600 checks with the...

The Big Beautiful Bill’s $156 billion in military spending is impossible to justify. The funding goes toward three purposes:

☑️ Corporate welfare
☑️ Enabling a foreign policy unmoored from morality or realpolitik
☑️ Buying unimaginably dangerous weapons

Read one proposal to get us out of this mess.

(Btw i failed out of community college)

Sometimes i shit on academia bc I’ve seen the evils but then i remember that it’s some peoples dream to go to college let alone to a big university and i need to have more gratitude

I never lost sight of my goal tho and attended UCLA for my MSW and PhD and I’m always grateful to God for that. Sometimes i take it for granted but I remember that He has pulled me through a lot, in spite of my getting in my own way. And he has sent reminders along the way.

When i was 15 i had this huge dream of attending ucla. I remember not getting into any UC’s even tho i had a 4.3 & multiple extracurriculars. I ended up dropping out of unlv starting over at community college in the bay. I was discouraged but i just kept going, working overnights to pay for school

White text on a purple background with falling confetti reads, "We did it, thanks to you! $30,500 donated / $30,000 matched / 109 new monthly donors. Thank you for supporting The Sick Times' summer fundraiser."

White text on a purple background with falling confetti reads, "The Sick Times summer fundraiser." Two lime green fundraiser thermometers are exploding with stars as the goal of $30,000 and 100 monthly donors has been met.

Thanks to your donations, we hit BOTH of our summer fundraising goals!

And thanks to the incredible support of @sfdirewolf.bsky.social's Disability Visibility Project, your donations will be doubled!

You've helped us carry our vital #LongCOVID journalism forward into 2026!

tools or conferences to connect with people and do the work that needs to be done.

towards a purpose that was created solely by them in efforts to gain/keep sovereignty (land ownership, right to stay, right to safe and clean water, etc). Research groups acting in collaborative efforts to make that goal happen and honoring the traditions of the elders. You don’t need fancy

Picture from Tebtebba a group of women are standing or sitting in teal plastic chairs outside in nature surrounded by trees. One is explaining something while the others listen

A group of people of Filipino descent sit around in a semi circle outside listening to a presentation

There’s a group of people sitting around in teal plastic chairs watching a presentation on a black sheet hanging up with a screen being projected onto it. The sheet is tied to two trees

Picture of my auntie doing sone research w/ Ganak da i-Licoy & 11 indigenous groups (including Madukayan, Balangao) in Paracelis in the Philippines (my family is from Cabugbugan) to think through their application for CADT. I think this is great example of true PAR. Having elders lead

This has to be said but I’m really sad that ppl are fighting for their lives and dont mean to be crass about that

Like yeah probably not a good idea to use peptides Willy Nilly from God knows where at a weird ass festival in Vegas bro

That’s one of the things I dislike most about rfk and no offense but other wealthy yt “holistic”
ppl as well, that spout so much bullshit and harmful rhetoric while also co-opting helpful natural and culturally embedded practices.

It’s so frustrating. And it’s not just that it’s petty drama but that it’s in a large way impacting the research on both. It’s heartbreaking and despicable imo. I am enthusiastic about research that looks at both too!

The shitty part is that this is going to make getting peptides even more difficult when the goal should imo being able to get them in a safer way in addition to more equitable western medicines

The global Church has failed its duty to challenge the Gaza genocide “The fact that churches have not sufficiently taken up this moral responsibility is a damning indictment. To brazenly prefer their comfort, interests, connections, and desire to avoid embarrassment...

“The fact that churches have not sufficiently taken up this moral responsibility is a damning indictment. To brazenly prefer their comfort, interests, connections, and desire to avoid embarrassment is moral bankruptcy,” says Jonathan Kuttab.

Now That They’re Free, Venezuelan Men Want the World to Know What They Endured in CECOT Venezuelan men deported by the Trump administration say they endured months of physical and mental abuse inside a Salvadoran prison. Though happy to be home, they say the fact that they were released…

Leonardo José Colmenares Solórzano, a 31-year-old Venezuelan, wants the world to know that he was tortured over four months in a Salvadoran prison.

He said guards stomped on his hands, poured filthy water into his ears and threatened to beat him.

I hope we get more help with figuring out biomarkers etc but in route to that I hope we become more unified and less defensive/siloed 🥲

Being a fucking mole for me. How disgusting that someone would say that, I am so sorry. Not at all surprised which is horrible. I had to put my phone down yesterday after getting into an argument about this because I was so exhausted and have been feeling helpless

Me too, it’s really really unfortunate.

Mine was caused by the vaccine but I feel for all my friends who had it before. I would’ve thought so too but there’s a lot of hate for ppl with me from long haulers bc they think if they claim it they’ll never get treated or taken seriously. From what I’ve seen and heard.