Katie J.
@kjohnstone.bsky.social
ME/CFS and related things. (she/her)
I'm also trying out a more lighthearted personal account: @lighterkatiej.bsky.social
I'm also trying out a more lighthearted personal account: @lighterkatiej.bsky.social
Pinned
Katie J.
@kjohnstone.bsky.social
· Jan 8
The Name of My Disease
YouTube video by Katie Johnstone
www.youtube.com
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...
www.youtube.com/watch?v=Dn41...
New post exploring how sexism, bad science, and an inability to acknowledge uncertainty, can lead doctors to treat everything they don't understand (or prefer to ignore) as psychosomatic. Specifically: somatic symptom disorder (SSD).
mecfs.substack.com/p/somatic-sy...
mecfs.substack.com/p/somatic-sy...
Somatic symptom disorder: Why your doctor doesn't believe you're really sick
SSD is a mainly-female condition which medicine treats as real and common, but which has no solid scientific basis
mecfs.substack.com
February 12, 2026 at 9:36 PM
New post exploring how sexism, bad science, and an inability to acknowledge uncertainty, can lead doctors to treat everything they don't understand (or prefer to ignore) as psychosomatic. Specifically: somatic symptom disorder (SSD).
mecfs.substack.com/p/somatic-sy...
mecfs.substack.com/p/somatic-sy...
Reposted by Katie J.
@tessamunt.bsky.social did you speak to @ashleydaltonmp.bsky.social on this?
Savannah cannot wait for a new service. She has been without nutrition for 8 WEEKS in constant agony and is literally dying.
You MUST force the hospital to listen to her expert & restore pain meds and nutrition.
#mecfs
Savannah cannot wait for a new service. She has been without nutrition for 8 WEEKS in constant agony and is literally dying.
You MUST force the hospital to listen to her expert & restore pain meds and nutrition.
#mecfs
** TRIGGER WARNING: This post contains upsetting content **
Last week, Tessa Munt MP raised Savannah Victora-May's case in parliament. During the debate, the lack of specialist services for people with Severe ME was also raised.
Watch the video: https://meassociation.org.uk/ra8d
#SevereME #MECFS
Last week, Tessa Munt MP raised Savannah Victora-May's case in parliament. During the debate, the lack of specialist services for people with Severe ME was also raised.
Watch the video: https://meassociation.org.uk/ra8d
#SevereME #MECFS
MP Tessa Munt raises issues of the lack of specialist services for those severely affected by ME/CFS - The ME Association
Tessa Munt ©House of Commons/Roger Harris, cropped and shared under […]
meassociation.org.uk
February 11, 2026 at 7:39 PM
@tessamunt.bsky.social did you speak to @ashleydaltonmp.bsky.social on this?
Savannah cannot wait for a new service. She has been without nutrition for 8 WEEKS in constant agony and is literally dying.
You MUST force the hospital to listen to her expert & restore pain meds and nutrition.
#mecfs
Savannah cannot wait for a new service. She has been without nutrition for 8 WEEKS in constant agony and is literally dying.
You MUST force the hospital to listen to her expert & restore pain meds and nutrition.
#mecfs
Reposted by Katie J.
we need to talk about that Ring Super Bowl ad
February 10, 2026 at 8:18 PM
we need to talk about that Ring Super Bowl ad
"Ultimately, all disabled people risk confrontation because nobody can live up to the impossible stereotype required for being truly ‘deserving’."
My full PhD thesis on disabled people's encounters with strangers in accessible #BlueBadge parking spaces is now publicly available: etheses.bham.ac.uk/id/eprint/17...
TLDR?
Here's the summary report instead: drive.google.com/file/d/1wmfK...
#DisabilitySky #DisabilityStudies
TLDR?
Here's the summary report instead: drive.google.com/file/d/1wmfK...
#DisabilitySky #DisabilityStudies
February 2, 2026 at 6:46 PM
"Ultimately, all disabled people risk confrontation because nobody can live up to the impossible stereotype required for being truly ‘deserving’."
Reposted by Katie J.
I watched Jennifer Brea’s excellent documentary Unrest today and I highly recommend it for anyone interested in learning more about ME/CFS and the medical dismissal and gaslighting ME patients face
youtu.be/RLQNfsTih10
youtu.be/RLQNfsTih10
Unrest Feature Documentary (Original with English subtitles)
YouTube video by Unrest Film
youtu.be
January 28, 2026 at 9:48 PM
I watched Jennifer Brea’s excellent documentary Unrest today and I highly recommend it for anyone interested in learning more about ME/CFS and the medical dismissal and gaslighting ME patients face
youtu.be/RLQNfsTih10
youtu.be/RLQNfsTih10
Reposted by Katie J.
BREAKING: Another rapid response action! Indivisible Vancouver is leading a protest rally THIS FRIDAY January 30 against Jim Pattison, who is planning to sell one of his warehouses in Virginia to DHS/ICE to become a human processing facility. #boycottpattison #ice #iceraids #protest
January 28, 2026 at 1:06 AM
BREAKING: Another rapid response action! Indivisible Vancouver is leading a protest rally THIS FRIDAY January 30 against Jim Pattison, who is planning to sell one of his warehouses in Virginia to DHS/ICE to become a human processing facility. #boycottpattison #ice #iceraids #protest
I'm setting up a new account, @lighterkatiej.bsky.social, for the non-ME/CFS aspects of my life, mainly books & films I love and some politics. I'm unfollowing a bunch of people here but rest assured, I'm going to follow you on the new account!
January 29, 2026 at 12:48 AM
I'm setting up a new account, @lighterkatiej.bsky.social, for the non-ME/CFS aspects of my life, mainly books & films I love and some politics. I'm unfollowing a bunch of people here but rest assured, I'm going to follow you on the new account!
Reposted by Katie J.
Just outside Seattle on I-5 🤘
January 27, 2026 at 10:35 PM
Just outside Seattle on I-5 🤘
Reposted by Katie J.
Reminder that, in recent days, children have rallied and protested for their freedom inside an ICE detention center where water has been described as "putrid" and meals reportedly contain “bugs,” dirt, and debris. This is where the kidnapped 5-year-old Liam Ramos is being held.
Protest breaks out at Dilley immigration detention facility holding 5-year-old Liam Ramos
A protest broke out Saturday at the ICE-run South Texas family detention complex in Dilley, where five-year-old Liam Ramos is being detained.
www.tpr.org
January 27, 2026 at 5:55 PM
Reminder that, in recent days, children have rallied and protested for their freedom inside an ICE detention center where water has been described as "putrid" and meals reportedly contain “bugs,” dirt, and debris. This is where the kidnapped 5-year-old Liam Ramos is being held.
Neil Young is from my hometown, and he just took gave his entire music catalogue to Greenland!
www.youtube.com/watch?v=n2Mt...
www.youtube.com/watch?v=n2Mt...
Neil Young - Harvest Moon [Official Music Video]
YouTube video by neilyoungchannel
www.youtube.com
January 27, 2026 at 7:23 AM
Neil Young is from my hometown, and he just took gave his entire music catalogue to Greenland!
www.youtube.com/watch?v=n2Mt...
www.youtube.com/watch?v=n2Mt...
The best compliment in the world is when someone discovers your account and likes a bunch of old posts. 😀
January 25, 2026 at 8:33 PM
The best compliment in the world is when someone discovers your account and likes a bunch of old posts. 😀
Reposted by Katie J.
An NHS hospital is starving a severe ME patient and has now stopped giving her fluids! Please scroll to the end to copy/paste an email to NHS Trust Chief Executive! Please share! www.thecanary.co/uk/analysis/... #pwME #MECFS #SevereME
An NHS hospital is starving a severe ME patient and has now stopped giving her fluids
Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk
www.thecanary.co
January 23, 2026 at 9:17 AM
An NHS hospital is starving a severe ME patient and has now stopped giving her fluids! Please scroll to the end to copy/paste an email to NHS Trust Chief Executive! Please share! www.thecanary.co/uk/analysis/... #pwME #MECFS #SevereME
I've sent an email, I used the one from the Canary article and changed it a bit. This is so heartbreaking. 💔💔💔
January 24, 2026 at 10:16 PM
I've sent an email, I used the one from the Canary article and changed it a bit. This is so heartbreaking. 💔💔💔
Reposted by Katie J.
With so many of us watching the tremendous mobilizations in Minneapolis, culminating in the call to action against ICE today, I wanted to share some of what I have gathered from talking to comrades in Minneapolis over the past few weeks. A few things stood out:
January 23, 2026 at 10:24 PM
With so many of us watching the tremendous mobilizations in Minneapolis, culminating in the call to action against ICE today, I wanted to share some of what I have gathered from talking to comrades in Minneapolis over the past few weeks. A few things stood out:
I'm deeply grateful to all the people in Minnesota who are standing up for humanity and decency by taking part in the protests and the general strike today.
-11 degrees at MSP & we are protesting the ICE Occupation in Minnesota during a day of General Strike & Truth and Freedom. We are demanding ICE leave, Accountability for the officer who murdered Renee Good, businesses no longer working with ICE, and no more funding to ICE. Stay safe, Stay warm!
January 23, 2026 at 8:46 PM
I'm deeply grateful to all the people in Minnesota who are standing up for humanity and decency by taking part in the protests and the general strike today.
Reposted by Katie J.
What we’ve seen in Minnesota should make you furious, but it should also inspire you.
January 23, 2026 at 7:22 PM
What we’ve seen in Minnesota should make you furious, but it should also inspire you.
I'm still coming to terms with the fact that managing my chronic illness is a full-time job. I'm basically a full-time carer, but the person I care for is myself. #moderateME
January 22, 2026 at 6:31 PM
I'm still coming to terms with the fact that managing my chronic illness is a full-time job. I'm basically a full-time carer, but the person I care for is myself. #moderateME
“Have you considered that it could be burnout?”—psychologization and stigmatization of self-reported long COVID or post-COVID-19 vaccination syndrome
link.springer.com/article/10.1...
link.springer.com/article/10.1...
“Have you considered that it could be burnout?”—psychologization and stigmatization of self-reported long COVID or post-COVID-19 vaccination syndrome - BMC Medicine
Background People reporting long COVID (LC) or post-COVID-19 vaccination syndrome (PCVS) not only suffer from their symptoms but also from stigmatization. Despite ample account and characterization of...
link.springer.com
January 22, 2026 at 7:38 AM
“Have you considered that it could be burnout?”—psychologization and stigmatization of self-reported long COVID or post-COVID-19 vaccination syndrome
link.springer.com/article/10.1...
link.springer.com/article/10.1...
Reposted by Katie J.
It's a good day to stop using Hootsuite and tell them why.
Vancouver firm Hootsuite provides services to ICE
U.S. procurement records show that Vancouver tech firm Hootsuite is providing social media services to the Department of Homeland Security.
vancouver.citynews.ca
January 22, 2026 at 5:59 AM
It's a good day to stop using Hootsuite and tell them why.
Godwin is famous for Godwin's Law, which says that if any internet discussion goes on long enough, someone will call someone else a nazi, which will end the discussion.
This was my favorite part 😆
(I was surprised to find myself grinning while reading such a shameful compilation, but this section brought me joy)
(thank you @abrokenbattery.bsky.social for compiling all of this!)
#MyalgicEncephalomyelitis #pwME #SevereME #MedSky #ChronicIllness #Disability
(I was surprised to find myself grinning while reading such a shameful compilation, but this section brought me joy)
(thank you @abrokenbattery.bsky.social for compiling all of this!)
#MyalgicEncephalomyelitis #pwME #SevereME #MedSky #ChronicIllness #Disability
January 20, 2026 at 4:40 PM
Godwin is famous for Godwin's Law, which says that if any internet discussion goes on long enough, someone will call someone else a nazi, which will end the discussion.
Simon Wessely used intimidation to change how an author wrote about ME and Long Covid. The threat of a law suit was likely a bluff, but still had the desired effect. This is how Wessely operates.
It was erroneously sent to him by a junior editor and he sent a 17 page rebuke. He threatened a law suit to the journal. I toned down the critiques that named him explicitly after consulting with my lawyer: it was very complicated and stressful honestly
January 18, 2026 at 9:43 PM
Simon Wessely used intimidation to change how an author wrote about ME and Long Covid. The threat of a law suit was likely a bluff, but still had the desired effect. This is how Wessely operates.
Oh, I do love this. They weren't wrong back in 1979.
January 18, 2026 at 2:14 AM
Oh, I do love this. They weren't wrong back in 1979.
Reposted by Katie J.
What disability and illness advocacy groups are doing good work in Minnesota right now in terms of direct aid and background activism/advocacy?
January 15, 2026 at 7:34 PM
What disability and illness advocacy groups are doing good work in Minnesota right now in terms of direct aid and background activism/advocacy?
I feel like at this point we're all living in Star Wars Andor? Like some people are having to deal with actual Stormtroopers, and others are just more or less living normal lives but knowing the Stormtroopers could come at any time.
January 15, 2026 at 7:47 AM
I feel like at this point we're all living in Star Wars Andor? Like some people are having to deal with actual Stormtroopers, and others are just more or less living normal lives but knowing the Stormtroopers could come at any time.
This is a wonderfully compassionate and real German documentary about ME, narrated by a young man whose friend developed ME and is now very severe. It covers what life is like with severe ME, and the ignorance of doctors and the lack medical care.
www.youtube.com/watch?v=XTWI...
www.youtube.com/watch?v=XTWI...
Chronisch krank: Wenn das Leben durch ME/CFS verschwindet I 37 Grad
YouTube video by 37 Grad
www.youtube.com
January 15, 2026 at 7:04 AM
This is a wonderfully compassionate and real German documentary about ME, narrated by a young man whose friend developed ME and is now very severe. It covers what life is like with severe ME, and the ignorance of doctors and the lack medical care.
www.youtube.com/watch?v=XTWI...
www.youtube.com/watch?v=XTWI...