Katie J.
@kjohnstone.bsky.social
ME/CFS, and other things. (she/her)
Reposted by Katie J.
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...
Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise - The Sick Times
An analysis by The Sick Times find that less than 15% of Long COVID clinical trials testing the benefits of exercise or cardiopulmonary rehabilitation measured post-exertional malaise, according to th...
thesicktimes.org
November 21, 2025 at 3:02 PM
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
Reflections on campaigning for ME/CFS 2022-2024
YouTube video by Katie Johnstone
youtu.be
November 23, 2025 at 4:52 PM
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!)
🔥🔥🔥
Delighted to say my comment got published! 👇
There was a lot of critiques I considered about this study, but the problem is that if we critique an individual study, future studies can just avoid that particular critique. So I tried to take a different approach 🧵
There was a lot of critiques I considered about this study, but the problem is that if we critique an individual study, future studies can just avoid that particular critique. So I tried to take a different approach 🧵
November 19, 2025 at 7:29 PM
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?
November 19, 2025 at 1:18 AM
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.
November 17, 2025 at 5:07 PM
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...
simonspichak.beehiiv.com/p/cbc-flagsh...
CBC’s Flagship Program Platforms “Quackery” for Long COVID
CBC's national broadcast aired an interview with Gill Deacon about her Long COVID recovery. Deacon used an unproven program called the Lightning Process that's been criticized for exploiting patients ...
simonspichak.beehiiv.com
November 7, 2025 at 9:38 PM
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...
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".
November 3, 2025 at 7:07 AM
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.
October 29, 2025 at 5:49 PM
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.
Reposted by Katie J.
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
www.justgiving.com/crowdfunding...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
October 11, 2025 at 4:32 PM
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
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...
mecfs.substack.com/p/do-hepa-ai...
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.
mecfs.substack.com
October 7, 2025 at 11:50 PM
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...
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)
October 6, 2025 at 7:03 PM
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)
Reposted by Katie J.
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.
The president cannot keep playing whack-a-mole with different states’ Guard units to get around court orders and the rule of law.
October 6, 2025 at 4:26 AM
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.
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.
October 4, 2025 at 2:33 PM
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?
October 2, 2025 at 5:57 PM
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.
October 2, 2025 at 3:32 PM
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.
October 1, 2025 at 11:46 PM
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/...
open.substack.com/pub/mecfs/p/...
How can we talk about clean air in 2026?
Paradigm shifts are hard.
open.substack.com
September 30, 2025 at 1:17 AM
"How can we talk about clean air in 2026?"
open.substack.com/pub/mecfs/p/...
open.substack.com/pub/mecfs/p/...
Reposted by Katie J.
Seren is a young person who lives in a really vulnerable household.
Everyone should listen to her story.
💙💜💗 #educationANDlives
Everyone should listen to her story.
💙💜💗 #educationANDlives
September 29, 2025 at 4:02 PM
Seren is a young person who lives in a really vulnerable household.
Everyone should listen to her story.
💙💜💗 #educationANDlives
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...
www.crowdjustice.com/case/justice...
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.
www.crowdjustice.com
September 27, 2025 at 9:19 PM
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...
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.
September 27, 2025 at 4:59 PM
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?
September 11, 2025 at 10:39 PM
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...
www.youtube.com/watch?v=MGt7...
Meeting Gary's favourite economist: Ha-Joon Chang
YouTube video by Garys Economics
www.youtube.com
September 7, 2025 at 7:33 PM
I'm a big fan of Gary Stevenson's economics videos.
www.youtube.com/watch?v=MGt7...
www.youtube.com/watch?v=MGt7...
Reposted by Katie J.
🇨🇦 #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 🇺🇸.
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 🇺🇸.
August 31, 2025 at 1:15 AM
🇨🇦 #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 🇺🇸.
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 🇺🇸.
Reposted by Katie J.
here's a plain-language explainer for anyone who wanted one:
Plan for a world of post-COVID immune effects
These changes are small, but across tens of millions of people, they add up.
canadahealthwatch.ca
August 22, 2025 at 6:20 AM
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_...
www.youtube.com/watch?v=rAb_...
How to stop the economy from collapsing
YouTube video by Garys Economics
www.youtube.com
August 20, 2025 at 6:26 PM
Gary Stevenson teaches us how to stop the economy from collapsing!
www.youtube.com/watch?v=rAb_...
www.youtube.com/watch?v=rAb_...