Katie J.
@kjohnstone.bsky.social
ME/CFS, and other things. (she/her)
Pinned
Sorry I Ghosted You - A tale of medical gaslighting
YouTube video by Katie Johnstone
www.youtube.com
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...
#ME #MyalgicEncephalomyelitis #MedicalGaslighting
www.youtube.com/watch?v=KPul...
Reposted by Katie J.
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.
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.
December 29, 2025 at 1:28 AM
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.
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.
Reposted by Katie J.
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).
Dear Jon Stewart c/o @weeklyshowpodcast.bsky.social
I recently watched, with great surprise and disappointment, a weeklyshowpodcast segment in which you and other "personalities," gleefully mocked and derided the relatively small subset of individuals who continue to wear a face mask in public.
I recently watched, with great surprise and disappointment, a weeklyshowpodcast segment in which you and other "personalities," gleefully mocked and derided the relatively small subset of individuals who continue to wear a face mask in public.
December 27, 2025 at 11:18 PM
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).
Reposted by Katie J.
@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
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
4. With this in mind, ignore anyone who mocks you for taking precautions to protect yourself and others. Their mocking comes from ignorance, and their ignorance comes from denial.
/end
/end
December 28, 2025 at 6:53 PM
@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
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
Reposted by Katie J.
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
#JohnVsJonVsME
@weeklyshowpodcast.bsky.social
Wow. @weeklyshowpodcast.bsky.social, advocates with infection-associated chronic conditions have been reaching out to you and your staff for years, under the impression you'd share your trademark compassionate curiosity with the public on the matter.
I'm disappointed in you.
I'm disappointed in you.
December 29, 2025 at 4:41 AM
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
#JohnVsJonVsME
@weeklyshowpodcast.bsky.social
Reposted by Katie J.
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...
Hey Jon Stewart, jokes about wearing masks aren't funny
Critics of the Daily Show host say he's a hypocrite.
www.motherjones.com
December 29, 2025 at 6:54 PM
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...
Reposted by Katie J.
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.
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.
Hey Jon Stewart, jokes about wearing masks aren't funny
Critics of the Daily Show host say he's a hypocrite.
www.motherjones.com
December 29, 2025 at 6:59 PM
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.
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.
Reposted by Katie J.
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?
December 27, 2025 at 11:21 PM
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!
December 25, 2025 at 7:51 PM
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...
mecfs.substack.com/p/on-disabil...
On disability, ableism, Long Covid, and opportunities for social change
An Imani Barbarin interview, and a little Cory Doctorow
mecfs.substack.com
December 23, 2025 at 6:03 PM
New Substack: thoughts from an Imani Barbarin interview, touching on ableism, Long Covid, and opportunities for change.
mecfs.substack.com/p/on-disabil...
mecfs.substack.com/p/on-disabil...
Reposted by Katie J.
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
bjgplife.com/what-does-th...
Screenshot from AMMES December 2025 newsletter
#LongCovid #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
December 21, 2025 at 1:36 AM
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
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...
www.youtube.com/watch?v=2EX6...
Imani Barbarin on disability rights, COVID and the war on Gaza | The Take
YouTube video by Al Jazeera English
www.youtube.com
December 20, 2025 at 3:24 AM
Thought-provoking interview with Imani Babarin on disability and ableism in society.
www.youtube.com/watch?v=2EX6...
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.
At today's talk, I touched on deception in activity management. Some-- often new to the field / to PEM-- will deceptively call their graded exercise program pacing.
Then, I stumbled across this from @sunsopeningband.bsky.social and it's actually worse. 🧪 🧵
bmjopen.bmj.com/content/15/1...
Then, I stumbled across this from @sunsopeningband.bsky.social and it's actually worse. 🧪 🧵
bmjopen.bmj.com/content/15/1...
Pursuing Reduction in Fatigue After COVID-19 via Exercise and Rehabilitation (PREFACER): a protocol for a randomised feasibility trial
Introduction Over 777 million COVID-19 infections have occurred globally, with data suggesting that 10%–20% of those infected develop Long COVID. Fatigue is one of the most common and disabling sympto...
bmjopen.bmj.com
December 18, 2025 at 12:51 AM
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...
#ME #MyalgicEncephalomyelitis #MedicalGaslighting
www.youtube.com/watch?v=KPul...
Sorry I Ghosted You - A tale of medical gaslighting
YouTube video by Katie Johnstone
www.youtube.com
December 16, 2025 at 5:48 AM
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...
#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...
lithub.com/nature-is-no...
Nature is Not Going to Cure You: On Raynor Winn’s Fabricated Memoir
Like many writers, I have been following the unfolding revelations about Raynor Winn and The Salt Path with great interest, and a degree of self-interest. I am a memoirist and nature writer, and I …
lithub.com
December 14, 2025 at 3:51 PM
"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...
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...
www.youtube.com/watch?v=WOGE...
Complicated (Official Trailer)
YouTube video by Open Eye Pictures
www.youtube.com
December 10, 2025 at 5:13 PM
'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...
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...
en.wikipedia.org/wiki/Merchan...
Merchants of Doubt - Wikipedia
en.wikipedia.org
December 8, 2025 at 8:01 PM
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...
en.wikipedia.org/wiki/Merchan...
I am the kind of dork that loves this sort of thing.
A book I read with my 5-year old showed a map with contour lines. My moment to shine! So I showed him this old graphic on how to read contour lines on topographic maps. Source: buff.ly/2Eptx0T
December 6, 2025 at 5:04 PM
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."
Experts Urge Long COVID Study of Historical Illnesses
In a paper publishing in the Cell Press journal..on December 4, scientists & doctors highlight the importance of studying long COVID in the context of other post-acute infection syndromes or chronic illnesses
www.miragenews.com/experts-urge...
In a paper publishing in the Cell Press journal..on December 4, scientists & doctors highlight the importance of studying long COVID in the context of other post-acute infection syndromes or chronic illnesses
www.miragenews.com/experts-urge...
Experts Urge Long COVID Study of Historical Illnesses
In a paper publishing in the Cell Press journal Trends in Immunology on December 4, scientists and doctors highlight the importance of studying long
www.miragenews.com
December 4, 2025 at 5:07 PM
"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...
www.instagram.com/reel/DRr7NsJ...
@themsbloke on Instagram: "When you have a chronic illness and receive unsolicited advice...
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#chronicillness #comedy #multiplesclerosis #unsolicitedadvice #peepshow"
76 likes, 14 comments - themsbloke on November 30, 2025: "When you have a chronic illness and receive unsolicited advice...
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#chronicillness #comedy #multiplesclerosis #unsolicitedadvice #peepsh...
www.instagram.com
December 1, 2025 at 3:21 AM
Funny stuff! And a little too real.
www.instagram.com/reel/DRr7NsJ...
www.instagram.com/reel/DRr7NsJ...
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...