Brian Porter

Same for engineering, especially on large complex projects. You aren’t Tony Stark in your robot garage, you are on a team, as leader or follower. Your success or failure will be about the people, especially as a leader. They did it, you just gave them the opportunity.

I just did my 2024 taxes. I had over $13,000 of unreimbursed medical expenses despite low deductible platinum-level insurance. Being chronically ill in the United States is really fucking expensive.

I have a good job with a good salary so, for now, I can afford this. Millions of people cannot.

WHOA! New users, alt text is standard here. You can remind yourself to add alt by going to settings -> accessibility.

Alt text describes images & text; you can also add context & humor.

Many won't share w/o it, and will even block & mute users who've been here awhile & don't/won't use it.

Cis men truly need to understand the power of saying “that’s fucked up bro why would you say that” to another cis man

Long COVID Is Harming Too Many Kids. They Need Help. Pediatric long COVID is more common than many thought, and we keep letting kids be reinfected with new variants

An early study claiming that the risk of long COVID in kids is "strikingly low" has been retracted. New research shows that 10-20% of kids, or about 6 million in the U.S., have long COVID symptoms after infection. www.scientificamerican.com/article/long...

Normalize telling people what they mean to you.

Big things or small. The person that helps you think about things differently or the pet posts that make you smile for a minute.

You won’t loose cool points for being sincere. I promise.

It feels like competing in ironman after ironman after ironman with no breaks in between. Just to barely keep up, much less thrive.

It still sounds entitled to my own ears after 22 years, but: When do I get to stop and rest? (Rhetorical question. I know the answer already.)

Jennifer Brea is working on her PhD at Harvard and about to marry the love of her life when she’s struck down by a mysterious fever that leaves her bedridden... UNREST Feature Documentary (With Captions and Multilingual Subtitles)

Today is Int’l ME/CFS Awareness Day. It is…a fucking garbage disease lol. If this is the first you’re hearing of it, I so much recommend the Sundance-premiered, Oscar-shortlisted doc UNREST (free on YouTube!)

ME affects more people than MS, incl half of all ppl w/Long Covid. Worth knowing about!

Panel 1: M.E How it can shrink one's life bits by bits Panel 2: Before M.E illustration of mountains, camping, a house, buildings - work, cafe, gym, party birthday cake and balloon Panel 3: Mild ME - work building and house sitting atop a high structure with PEM rocks below Panel 4: Moderate ME - a house sitting atop a high structure with PEM rocks below Panel 5: Severe ME - a person in bed atop a high structure with PEM rocks below Panel 6 Very Severe ME - black, complete darkness

How #MyalgicEncephalomyelitis shrinks your world...

Illustration by Kornelia Paulsen

#pwME
#MillionsMissing
#WorldMEDay
#MEAwarenessDay

I’ve long had the ability to fly (Hitchhiker’s Guide style) in dreams, but whenever I do, the other ‘characters’ are invariably nonplussed, which is annoying, frankly. Be impressed already! 🤷‍♂️

As usual, this piece from Julia is filled with excellent quotes, including:

"We are the adults. We need to address this situation, protect kids, and clean the air, not laugh it off or act like airborne viral infections are some sort of inevitable act of God."

A-fucking-men.

If you want to know my biggest covid trauma, it's still happening today. Every day. For now four years.

Watching people willfully ignore objective fact and allow themselves to be swayed into pretending reality doesn't exist or is less severe than it actually is.

@geirgemonbiot tweeted: I was in hospital for tests this morning. A nurse asked me “How come so many people are wearing masks? Is there something I don’t know?” I almost lost the power of speech.

Abled people, it’s time to take this battle up for yourselves. The disabled population is too exhausted, too sick, and too dead to keep warning everyone.

Long Covid Moonshot

➡️ Even if you do not currently have LC you 💯 want there to be treatments by the time you do have it! ⬅️

This is an everybody issue!

Please visit longcovidmoonshot.com where you can find a call guide, what Senators are on the committee that we want to encourage to attend, and a script if you like!

You’ve been kidnapped. The characters from the last tv show you watched are trying to rescue you. Who is coming to save you?

Yep, I’m definitely going to be okay. 😅 (Good thing I wasn’t watching _Stargate: Universe_ last! They definitely aren’t coming to get me any time soon.)

Don't miss this beautiful obituary of #BethMazur that her life partner Brian Vastag wrote. I guarantee you'll learn things about her you didn't know, and that you'll come away with more appreciation and love for her. Scroll down a bit. www.meaction.net/2024/01/10/b...

Photo of Beth Mazur smiling at the camera on a graphic with a cream background and greenery. Text: Beth Mazur Celebration of Life Service January 13, 2024 2:00 pm PT Livestream: bit.ly/BethMazur

As many of you know, Beth Mazur passed away after battling ME for 15 years. She was a co-founder of #MEAction and a selfless beacon of hope and light for so many in our community. The service will be held on January 13th at 2 pm PT/ 5 pm ET. Virtual link: bit.ly/BethMazur

20 years ago we were suing teenagers for millions of dollars because they were torrenting a single Metallica album and now billionaires are demanding the free right to every work in history, so that they can re-sell it.

The law only ever serves capital.

A whole lot of people on this thread showing how little attention they've paid to Long COVID.

It's a simple explanation--

Many LC patients are too sick to advocate for themselves.

Whereas with HIV, there's a delay between becoming sick and becoming incapacitated, (1/n)

This is why LC activists have been calling repeatedly for abled allies to get in the fight with them.

And why ME/CFS advocates have been calling for the same even before the pandemic!

'This is the end of the relationship': The marriages under strain from long COVID Long COVID is not just destroying people's health. Behind closed doors, in homes across Australia and abroad, it is irreversibly changing relationships — sometimes for the better, too often for wor...

"I don't know how to be more clear about how much of an existential threat this is, but it doesn't seem to be getting through — we still seem to be in this denial phase of 'othering' the illness.” www.abc.net.au/news/2023-12...

😔 for those of us who are paying attention, when you try to hold in your head all of the cool dreams and goals that will go unrealized because of Long COVID, the weight of it is soul-crushing.

I will never not be mad about this, that we didn't collectively do more.

John Kadlecek, Beth Mazur, and Julie Rehmeyer, bundled up for cold weather, smiling.

I was lucky to share the last couple of weeks of #BethMazur's life with her. I want you to know: She felt loved when she died. She died because her ME was unbearable. There's nothing more any of us could have done. Effective treatment is the only thing that could have saved her.

It's extremely frustrating that Substack is finally getting shit on *now* for explicitly supporting Nazi views when trans people have been telling y'all for *years* that they repeatedly actively funnelled money towards bigots.

Civic duty looks different for folks who look different. It costs them more.

Think about that when a marginalized person steps up to run for something, they put a lot more at stake than some of their opponents.

If you want to know how bad things are with COVID right now, just be aware that the CDC Director is recommending that people wear masks in public again.

Opinion | Reporting on Long Covid Taught Me to Be a Better Journalist Covering long Covid solidified my view that science is not the objective, neutral force that it is often caricatured to be.

I wrote an op-ed for the NYT about what reporting on long COVID has meant to me—how I approached it, the impact it had, and how it taught me to be a better journalist.

This piece is sort of a manifesto for a journalism grounded in compassion, rigor, and care.

www.nytimes.com/2023/12/11/o...

Chronic fatigue affects far more Americans than previously thought The CDC says the debilitating disease affects millions of Americans and there is no known cure for the syndrome.

Let me fix that headline for you: “Turns out doctors were wrong when they thought people with ME/CFS were lying”

www.usatoday.com/story/news/h...

If your holiday plans are important to you, now and the next few weeks would be a really good time to be extra careful when indoors around others. Covid rates are high and rising and flu and RSV are up there too.

Getting shuffled around doctors, having to get a new appt w/a new GP (in 6 months) bc your old one quit, is work. Your pet has a problem you worry could be serious but the vet can't see them for a month, is work. You can't find consistent childcare, is work. Wages don't cover ALL the EXTRA work.