when ICE asks you questions about your neighbors, you've never met your neighbors in your life. you've never even seen them from afar. neighbors? what neighbors?

Yup, we are 100% living in a science fiction story.

My friend Alice Wong was a civil rights & disability justice activist, community organizer, & author. She was unapologetic in her pursuit of building a more just world & shining a light on issues society hesitated to address. She is deeply missed, but her legacy carries on.

Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome @sunsopeningband.bsky.social Todd E. Davenport, @scheibenbogen.bsky.social Carmen Scheibenbogen, Mark A. Zinn, Mary Dimmock, Janet Stone, Karl J. Tronstad, Øystein Fluge, Jonas

The @uwofa1 - University of Western Ontario Faculty Association - is quickly becoming a leader in post-secondary education messaging about the equity implications and importance of masking as an integral layer of C19 and flu mitigation. Let’s show them some love, folks! ❤️🙏

Thanks for this detailed and thoughtful 🧵, it's incredibly valuable that you picked up on and described all the nasty little tricks the author used to misrepresent ME and Long Covid and other illnesses.

Oh crap. I'll admit I thought this looked like a good one and shared a couple of posts about it. Yikes.

I'm sure other countries - the UK, the US, Canada, and others - would come up with similar figures if they did the same math.

Today in @thesicktimes.org: An excerpt from @emendenhall.bsky.social's new book "Invisible Illness" detailing the long history of post-viral illnesses and their impact across the globe and time. thesicktimes.org/2026/01/08/a...

I'm probably preaching to the converted, but I did a little video on why you shouldn't call ME/CFS 'chronic fatigue syndrome'. www.youtube.com/watch?v=Dn41...

Millennials and Gen Zs, are you tired of apps that change from one month to the next, suddenly have ads or free features disappear and return as paid add-ons? May I introduce to you the concept of...✨✨✨*really old software*✨✨✨! GIMP, Inkscape, Kdenlive, Audacity! 🧵

Sending warm & compassionate thoughts toward American friends who are worried about their democracy.

"What are we going to do this year, Brain?" "The same thing we do every year... SURVIVE OUT OF SPITE!"

“I’m honored to be your ancestor and believe that disabled oracles like us will light the way to the future. Don’t let the bastards grind you down. I love you all.”

I’m actually not #OneOfTheTwo people out there #SaltingTheVibes in my respirator, because my post-viral disability has left me homebound. So thanks @weeklyshowpodcast.bsky.social for making the world just a little bit more hostile for my kids, #TwoOfTheTwo out there trying to protect their mother.

Disappointed tho not surprised, but it should not go unremarked upon that Jon Stewart’s arguably best act is his unflagging advocacy for 9/11 first responders who suffered permanent disability from—yes—working amidst deadly airborne matter without proper protective equipment (like, y’know, masks).

@weeklyshowpodcast.bsky.social Dear John, always loved you‘re work. Don‘t mock the few informed, caring people. I mask, because my till then healthy kid got seriously disabled from COVID, every reinfection makes it worse. Don‘t know if he will ever recover. #MECFS #MillionsMissing

The casual ableism & willful ignorance after we hoped so hard you would learn about the horrors of infection associated chronic conditions & #GreatestMEdicalScandal & devote just a bit of airtime to educating the public… Kinda heartbroken, really #JohnVsJonVsME @weeklyshowpodcast.bsky.social

Wrote about how disappointing it is that Jon Stewart punched down on people masking at @motherjones.com, when people should mind their own business and leave mask wearers be. www.motherjones.com/politics/202...

Dear Jon Stewart, No one randomly owes you information about their health, their loved one’s health, or, understandably, just wanting to avoid Covid, which is the only way to prevent Long Covid.

Will Jon Stewart @weeklyshowpodcast.bsky.social advocate as fiercely for COVID responders who worked w/out proper PPE (and now suffer with Long Covid & multiple other health complications) as he does for 9/11 first responders?

Happy and/or miserable Christmas! It's ok to feel miserable at Christmas, lots of people do. Try not to feel bad about feeling bad, your feelings are normal and human. If you're feeling jolly that's ok too!

New Substack: thoughts from an Imani Barbarin interview, touching on ableism, Long Covid, and opportunities for change. mecfs.substack.com/p/on-disabil...

Elke Hausmann @drelke.bsky.social on Exercise and “The Salt Path” bjgplife.com/what-does-th... Screenshot from AMMES December 2025 newsletter #LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Thought-provoking interview with Imani Babarin on disability and ableism in society. www.youtube.com/watch?v=2EX6...

Everything about this is horrifying. These researchers are deliberately deceiving people into doing a dangerous 'therapy' and they don't know anything about the condition they're studying.

A 30 min video on my experience of being medically gaslit for the first 10 years of my illness. #ME #MyalgicEncephalomyelitis #MedicalGaslighting www.youtube.com/watch?v=KPul...

"For years I have been trying to highlight this fixation on the Nature Cure as a kind of victim blaming, implying as it does that people who have not been cured by time spent with nature simply haven’t tried hard enough." 1/2 lithub.com/nature-is-no...

'Complicated' is a new documentary exploring how kids with Ehlers Danlos are disbelieved, and their parents wrongly accused of child abuse. I knew this happened in ME/CFS and Long Covid, I didn't realise it happened in Ehlers Danlos as well. 1/2 www.youtube.com/watch?v=WOGE...

I hadn't realised that the misinformation techniques used to spread climate change denial were first used to deny the link between smoking and cancer. I think similar techniques have been used with ME/CFS, and now Long Covid. en.wikipedia.org/wiki/Merchan...

I am the kind of dork that loves this sort of thing.

"Across history, infectious disease outbreaks—from influenza to polio—have led to subsets of patients with persistent, often unexplained symptoms... For many people, these symptoms are debilitating... and the mechanisms that trigger them remain unclear."

Funny stuff! And a little too real. www.instagram.com/reel/DRr7NsJ...

Today @thesicktimes.org: big story from @spichaksimon.bsky.social examining exercise trials for Long COVID. His analysis found that, among LC exercise trials registered on clinicaltrials.gov, less than 20% even *mention* PEM in their trial registration. thesicktimes.org/2025/11/21/l...

a little video with reflections on my time campaigning on ME/CFS in the UK. I looks at compromises I found myself making as a campaigner, why I'm not doing campaigning work anymore, and a bit of an update on my life. youtu.be/fXycJLLCQEs

Harriet Caroll does a fantastic job of explaining the rather nuanced problems in Long Covid research which fails to take ME/CFS and PEM into account. (I'm oversimplifying the situation - but she doesn't!)

Do people with ME/CFS ever have bad reactions to the flu jab?

I've been thinking about Alice Wong's idea that people, including disabled people, have intrinsic worth, worth that isn't tied to working or being productive. A simple but powerful idea, one that to be honest I still struggle with.

Horrified but not surprised to learn that the predatory pseudoscience known as the Lightning Process is alive and well in Canada, and being targeted at (the bank accounts of) people with Long Covid who are desperate to return to their old lives. simonspichak.beehiiv.com/p/cbc-flagsh...

When we talk about covid denial we should be less "people are stupid" and more "people are being let down and lied to".

I'm worried that the long-term response to the likes of Zohran Mamdani and Zack Polanski will be increased control/censorship of social media.

Thanks very much to Joan Crawford (in the UK) for undertaking this challenge in aid of an interesting research treatment trial in Norway that requires further fund-raised money/donations www.justgiving.com/crowdfunding... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

New Substack post about HEPA air purifiers. They're good, but not quite as good as the advertising might lead you to expect. mecfs.substack.com/p/do-hepa-ai...

I've been thinking lately about how I grew up in a cloud of second-hand smoke because everyone smoked indoors, how no-one wore seatbelts, how we thought everyone was heterosexual and climate change was a ridiculous conspiracy theory (1/2)

Late tonight, a federal judge issued a sweeping new order prohibiting the president from deploying any National Guard forces—from any state or DC—to Oregon. The president cannot keep playing whack-a-mole with different states’ Guard units to get around court orders and the rule of law.

If you live in the Northern hemisphere and you've been feeling more tired than usual and having difficulty concentrating, it could be due to poor indoor air quality. With the cooler weather we shut our windows, and if the ventilation isn't great the indoor CO2 levels go up.

How much does running an air purifier reduce the risk of getting Covid? Assume it's a really good air purifier. I've seen a lot of articles stating vaguely that air purifiers are "effective" or "a tool" against Covid, but I want a number. How much does running an air purifier reduce my risk?

It seems like the best air purifiers are either ones by indie manufacturers, or DIY ones you make yourself.

Currently going down a rabbit hole learning about how and if air purifiers work (HEPA and other). It's a very deep rabbit hole.