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.

"How can we talk about clean air in 2026?" open.substack.com/pub/mecfs/p/...

Seren is a young person who lives in a really vulnerable household. Everyone should listen to her story. 💙💜💗 #educationANDlives

A legal challenge to force the UK government to fund specialist health services for ME/CFS has 20 hours to go. This seems like a good thing to support, for those who can afford to. www.crowdjustice.com/case/justice...

People denying that Covid is dangerous is just like tobacco in the 1950s and climate change in the 2000s. We're going to win the argument, the question is how fast? Faster is better.

I've had a sore throat for roughly 9 months and I've been wondering if it's worth asking a GP to try and treat it. I'm worried because I think a persistent infection could be bad for my ME, but it might be better to tell the GP it's making it hard for me to talk. Any advice?

I'm a big fan of Gary Stevenson's economics videos. www.youtube.com/watch?v=MGt7...

🇨🇦 #Canadasky please share 📌 Parliament is going to return soon and one of the first bills it is going to pass is Bill C2, which will give the police unprecedented powers over the lives of Canadians, including massive surveillance, and the ability to share our data with 🇺🇸.

here's a plain-language explainer for anyone who wanted one:

Gary Stevenson teaches us how to stop the economy from collapsing! www.youtube.com/watch?v=rAb_...

Lost my glasses. It's funny how, when you have ME, something that would be just annoying for a healthy person becomes completely devastating.

The real goal of internet age verification is to de-anonymize the internet so that your data - and your opinions - can more easily be collected and sold to whatever corporations (or governments) are interested in them. www.donotpanic.news/p/were-losin...

Scary insider news about the Cochrane group, which produces medical reviews: "In abdicating this editorial responsibility, along with a new policy of not informing readers when they know a review is out-of-date, Cochrane has dismantled a core part of what defined Cochrane reviews." #MECFS #Medical

Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights

Does anyone have sensitivity to sunlight that makes your eyes swell up? It's been getting so bad for that my eyes are pretty much always swollen even though I'm mostly avoiding the sun. Does anything help (apart from the obvious dark glasses and sunhat)?

The new Neil Halloran documentary on Smallpox has completely changed how I see the RFK Jr. version of the world. Neil (softly) argues that realizing that disease isn't the fault of the sick /or/ the fault of the Gods ushered in a new future where we felt the authority to care for each other.

"The Nazis... imagined their targets would self-deport. Once the myth of self-deportation collapsed, they turned to more punitive measures. On Tuesday, Noem similarly noted the Everglades camp was meant to frighten immigrants into self-deporting. 'If you don’t,' she said, 'you may end up here.'"

Luggable XL / Ultra how-to now available on YouTube. Skip to the parts you need help with or watch the whole thing. Use code: BreatheFree for 10% off all kits! Thank you to our videographers, @cly802.bsky.social and @beccaroth.bsky.social for this tutorial!

“this is just what ICE’s budget is now and we’ll be yelled at if we try to reduce it” is an unacceptable answer for any Dem going forward and anyone who makes this argument should be primaried we simply cannot allow this apparatus to entrench itself

This is a depressing interview about climate change, but I love that David Suzuki is so pissed off he's talking about dicks. www.ipolitics.ca/2025/07/02/i...

I love that David Suzuki is so pissed off about climate change he's talking about dicks. www.ipolitics.ca/2025/07/02/i...

Hello…doing some research now on the increasing viral impact on people as we went super global as a potential driver of immune disregulation. I’ve got some good leads on the current state of research but if there’s anyone who knows anything they think I should know, please let me know!!

We cannot sacrifice anyone. Immigrants. Gay and trans people. The poor. The disabled. No one. Everytime you sacrifice you gift more power to the fascists. This has to be a movement of total solidarity. Here and everywhere. No more partnering with authoritarianism for any reason.

Yesterday I used this "AI -Free Statement" in a conference talk for the first time. Still trying to figure out the exact language. Feel free to borrow, modify, etc.

Ham... and cheese. Ham... burger. Ham... sterdam. Authorities: Don't say it! Don't say iiiiiiiit! Everyone: Nngngngh! I'm gonna...! Ham... as. Authorities: You have the right to remain SILENT! Anything you do say... 🚨🚔🚨 @tadhg.bsky.social Dropping the H bomb

Interesting cultural difference: in Canada when I say I have ME people look at me blankly and ask what it stands for. But they recognize 'chronic fatigue syndrome'. In the UK people at least recognize the term 'ME', even if they don't know much about it.

When respirators/masks are illegal in public, disabled people are illegal in public.

We have serious concerns about the appointment of Dr Terry Segal as paediatric expert in the @covidinquiryuk This is due to her problematic history with ME, association with BACME & present framing of #LC 🧐What does the evidence say? /1

Aged 20 I was marched across the tarmac at Kabul Airport🇦🇫with an AK47 shoved into my back, but Labour's plan to cut sickness & disability benefits even while every single org who represents us tells them how catastrophic this will be, is a million times more terrifying #TakingThePIP

A new symptom I've developed: if I sit in bright sun for too long my eyelids swell up and turn purple. It's spectacularly unnatractive!

They went into this knowing this was practically a certainty. It's really brave. I really hope this 1) spurs more people to try to help those in Gaza, and 2) gets more people to wake the fuck up about how horrendous Israel is.

I don't care if these monstrous ICE raids are a "federal operation". This is authoritarian violence, plain and simple. Just because Stephen Miller has kidnapping quotas for brown people he doesn't want to see on the street doesn't mean we have to think it's okay.

From ME Research UK: Symptom invalidation (also known as medical gaslighting) may lead to diagnostic delays for people with complex chronic illnesses like #MECFS finds a study published in the journal "American Psychological Association". Read more: bit.ly/451riym #chronicillness #invisibleillness

New post: "The doctors are not OK: Shame, medical training, gaslighting, and cycles of abuse." mecfs.substack.com/p/the-doctor...

amazon.com has randomly delayed my diamine oxidase delivery by 2 weeks. So I will spend the next 2 weeks incapacitated and in unspeakable pain. It's completely insane that the healthcare system doesn't know MCAS exists, and you have to rely on dodgy corporations to sell you needed medications.

"People living with ME/CFS deserve the utmost urgency for biomedical research and optimal care. This is where hope lies." My "ME/CFS care must be grounded in lived experience and biomedical research" is out in the British Medical Journal/BMJ (a response to Miller et al) www.bmj.com/content/389/...

Nice to see that Pod Save the UK's piece on protests against PIP changes mentioned ME quite prominently. @podsavetheuk.crooked.com www.youtube.com/watch?v=2RPK...