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
Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Because the mechanisms that usually ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack.
Can anyone recommend an app to track heart rate over the course of a day? Ideally free, or at least not pricey.
that’s right, wired. you got a hydroxychloroquine-level psycho writing for you. imagine claiming gluten disorders aren’t real. you owe everyone a retraction and apology @wired.com
Emily Johnson@emilyrj.bsky.social · 5mo agoHe’s done this for decades, it’s a whole thing for him, he said a year ago Long Covid is psychogenic and this week he said there is no such thing as Long Covid, @wired.com must retract and apologize www.celiac.com/celiac-disea...
Do we have an idea of what % of people have ME (or ME/CFS) these days, both Long Covid ME and the other kind? I've read some wildly different figures, from 0.6% to 6%!
The BBC has covered our study on medical power and #LongCovid. It’s a shame they didn’t name me and got my university name wrong, but nonetheless, good to see some MSM attention www.bbc.com/news/article...
Long Covid patients gaslit by GPs, Surrey study finds
The University of Surrey study says patients faced "gatekeeping" of medical treatment from doctors.
bbc.com
Substack post: How common is Ehlers Danlos syndrome? It's surprisingly hard to find out. mecfs.substack.com/p/how-common...
How common is Ehlers Danlos Syndrome?
It's surprisingly hard to know.
mecfs.substack.com
New substack: 'How medical training promotes medical gaslighting'. mecfs.substack.com/p/how-medica...
How medical training promotes medical gaslighting
Medical gaslighting occurs when a medical professional wrongly downplays or dismisses a patient’s symptoms.
mecfs.substack.com
Does anyone in the UK know how to get LDN from Dickson Chemist's? I tried to figure this out years ago but I couldn't work it out. They're a chemist's, right? So you need to already have a prescription from a doctor, but there aren't any doctors who will give the prescription, so...? #pwME
New substack post: "This is endometriosis" is a stunning, award winning short documentary with resonances for people with ME. mecfs.substack.com/p/this-is-en... The documentary is here: www.youtube.com/watch?v=1q-u...
THIS IS ENDOMETRIOSIS: Finding Strength 🏆 BAFTA Winning Short Film
YouTube video by Short Frame: Award Winning Short Films
youtube.com
New substack post: "Freud's Hysteria, Part of the history of psychologizing physical illness". mecfs.substack.com/p/freuds-hys...
Freud's Hysteria
Part of the history of psychologizing physical illness
mecfs.substack.com
Please share this around #MedSky. Far too many clinicians are still practicing like it's 2019. #SciSky #StandUpForScience
Population - With a Disability, 16 Years and over
Population - With a Disability, 16 Years and over
fred.stlouisfed.org
World Health Network@thewhn.bsky.social · 8mo agoLong COVID isn’t rare. According to the WHO, about 15 in 100 people still have symptoms 12 months after COVID-19 infection. Prevent infection. Prevent reinfection. Protect your health. #LongCOVID #LongCOVIDAwarenessMonth #PublicHealth #CleanAir
New post: Some people feel validated by an FND diagnosis; we should treat these people with respect, understanding and compassion (even if we think they're wrong) mecfs.substack.com/p/some-peopl...
Some people feel validated by an FND diagnosis; we should treat these people with respect, understanding and compassion (even if we think they're wrong)
It’s complicated!
mecfs.substack.com
Thinking that *chronic fatigue syndrome* is *chronic fatigue* is like thinking that jelly fish are fish, or that wine gums contain wine, or that a cat burglar is a person who steals cats.
Clip 2 from Austrian TV report about Samuel ME/CFS was largely ignored in Austria until Covid. The hallmark symptom is that exertion can make the illness worse. Many doctors are completely unaware, even though patients have been saying this for decades. #MECFS #LongCovid
Adam@abrokenbattery.bsky.social · 8mo agoTW: Very distressing content Clip from Austrian TV report on Samuel, who developed severe ME/CFS following Covid and chose assisted suicide on his 22nd birthday. Includes a brief interview with him before his death. #MECFS #LongCovid
Coming Soon: 2025–2026 UCSD ME/CFS Essay Contest Winners! Help us amplify these student voices advancing care for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). We’re actively seeking media coverage. Please DM us or email info@mecfssandiego.com with any contacts.
Update on Savannah: They are now urgently seeking any UK doctors or hospitals willing to provide TPN and restart cyclizine. If no safe option is found, they are even considering treatment abroad. If you have suggestions, please fill in the form tally.so/r/81KxGO
Please share any trusted doctors for (very) severe pwME. UK or Western Europe. NHS or private.
Made with Tally, the simplest way to create forms.
tally.so
Adam@abrokenbattery.bsky.social · 8mo agoTW: Update on Savannah via GoFundMe: Donations have now funded legal action. Sonya Chowdhury (CEO Action for ME) has briefed a solicitor as well as Savannah’s MP. I’ve donated again. Also includes a diary style update of her experience in hospital. www.gofundme.com/f/severemerg...
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...
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
@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
ME Association@meassociation.org.uk · 9mo ago** 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
"Ultimately, all disabled people risk confrontation because nobody can live up to the impossible stereotype required for being truly ‘deserving’."
Dr Vera Kubenz she/they@verakub.bsky.social · 9mo agoMy 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
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
Unrest Feature Documentary (Original with English subtitles)
YouTube video by Unrest Film
youtu.be
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!
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.
tpr.org
Neil Young is from my hometown, and he just took gave his entire music catalogue to Greenland! www.youtube.com/watch?v=n2Mt...
Neil Young - Harvest Moon [Official Music Video]
YouTube video by neilyoungchannel
youtube.com
The best compliment in the world is when someone discovers your account and likes a bunch of old posts. 😀
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
thecanary.co
I've sent an email, I used the one from the Canary article and changed it a bit. This is so heartbreaking. 💔💔💔
Hazie@hazie.bsky.social · 9mo agoA Black women with very severe ME is being denied care & nutrition by the NHS. Instructions and a template to email are contained in the posted article.
