Katie J.

Photo of Joan on a bike Organised by Joan Crawford Health and medical Story Joan's story In 2004 I was diagnosed with ME. Then, and it remains the case today that there are no NICE approved medical treatments for this profoundly disabling condition. I was fortunate enough to be re-diagnosed with a different condition in 2005, which allowed me access to effective medical treatments. It's been a long slog; however, I am recovered to get back into cycling which I loved before becoming ill. My cycle will raise funds for a Norwegian Daratumumab trial Daratumumab is a medical treatment used in various cancers and auto-immune conditions. In Norway small scale trials has proven remarkably effective in people with ME, compelling enough to warrant larger stage 3 clinical trials, which are now underway in Norway. Around 2/3rds of ME sufferers respond to this treatment giving them a dramatic improvement in the

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

Do HEPA air purifiers really remove 99.95% of dangerous particles from the air? The 99.95% claim is technically true, but misleading. HEPA air purifiers are good! But not that good.

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...

... and I think it definitely is possible to start cleaning indoor air and wearing masks in certain settings to slow the spread of Covid. It might seem impossible now, but it's amazing how fast something can go from impossible to completely obvious. (2/2)

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)

Foxes, henhouses.

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.

Measuring indoor air quality with a carbon dioxide monitor I got an Aranet, and learned that the air quality in my apartment is really, really bad!

I actually just wrote a blog post about my new interest in indoor air quality: mecfs.substack.com/p/measuring-...

My new apartment is so well insulated it's almost hermetically sealed but there's almost no ventilation, so I've become very interested in indoor air quality lately.

For instance this: 'Indoor CO2 concentrations and cognitive function: A critical review'
pubmed.ncbi.nlm.nih.gov/32557862/

It's probably not just the CO2 itself, it might be that CO2 correlates to higher levels of particulates, volatile organic compounds, and other nasty stuff. But there are studies that raised CO2 and nothing else, and found negative health effects.

That's what I thought at first, I was only interested in CO2 levels as a proxy for how much Covid might be in the air, but it turns out there's pretty robust evidence that indoor air with higher CO2 has effects like tiredness and poor concentration. 🧵

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.

That's a good point.

Good to know. I had a dream of inviting people round for tea and a chat without masks, but it looks like that's going to have to stay just a dream.

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? Paradigm shifts are hard.

"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

NHS care for ME now Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.

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 should have clarified: I don't fear an undesirable diagnosis. As a patient with ME, POTS and MCAS, I fear that if I go to the doctor with one more thing they think is either trivial or not real, I'll get written off as a hypochondriac.

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?

YouTube video by Garys Economics Meeting Gary's favourite economist: Ha-Joon Chang

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 🇺🇸.

Ooh, let's play a game where we come up with 'causes' of autism that are somehow less unhinged than whatever RFK Jr will come up with. I'll go first!
1. Chemtrails.
2. Obama.
3. Aliens.
4. Feminism.
Just kidding, we all know it's going to be vaccines.

Plan for a world of post-COVID immune effects These changes are small, but across tens of millions of people, they add up.

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

Marketing.

YouTube video by Garys Economics How to stop the economy from collapsing

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