Katie J.

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

1.2K followers551 following246 posts

Katie J. reposted

Chloé de Canson
@chloedecanson.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.

Katie J. reposted

Amyville Hoyrror
@amyhoy.bsky.social

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

He’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...

celiac.comA Review of: The Gluten Lie - And Other Myths About What You Eat by Alan Levinovitz, PhDSeveral years ago, Dr. Levinovitz contacted me by telephone, asking if he could interview me then, and in subsequent calls, for a book he was writing about gluten consumption. Assuming he, as an acade...
Katie J.
@kjohnstone.bsky.social

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%!

Katie J.
@kjohnstone.bsky.social

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

Katie J.
@kjohnstone.bsky.social

I ended up going with Harpal Clinic, they were nice but pricey. I live in Canada now, but if people ask me how to get LDN in the UK I don't want to point them to the more expensive option.

Katie J. reposted

Mark Ungrin
@mark-ungrin.bsky.social

Please share this around #MedSky. Far too many clinicians are still practicing like it's 2019. #SciSky #StandUpForScience

fred.stlouisfed.orgPopulation - With a Disability, 16 Years and overPopulation - With a Disability, 16 Years and over
World Health Network@thewhn.bsky.social

Long 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

Katie J.
@kjohnstone.bsky.social

It was pointed out in the comments that it sounds like I'm saying to people with an FND diagnosis that their illness isn't real - that's not what I was aiming for, and I'm still thinking about what is the best way to talk about FND.

Katie J.
@kjohnstone.bsky.social

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.

Katie J. reposted

Adam
@abrokenbattery.bsky.social

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

TW: 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

Katie J. reposted

ME/CFS San Diego
@mecfssd.bsky.social

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.

Katie J. reposted

Adam
@abrokenbattery.bsky.social

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

tally.soPlease share any trusted doctors for (very) severe pwME. UK or Western Europe. NHS or private.Made with Tally, the simplest way to create forms.
Adam@abrokenbattery.bsky.social

TW: 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...

gofundme.comDonate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam PearceVery Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
Katie J.
@kjohnstone.bsky.social

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.comSomatic symptom disorder: Why your doctor doesn't believe you're really sickSSD is a mainly-female condition which medicine treats as real and common, but which has no solid scientific basis
Katie J.
@kjohnstone.bsky.social

"Ultimately, all disabled people risk confrontation because nobody can live up to the impossible stereotype required for being truly ‘deserving’."

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Katie J. reposted

Emily Lowan (she/her)
@emilylowan.bsky.social

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

Katie J. reposted

Puff the Magic Hater
@mskellymhayes.bsky.social

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.

tpr.orgProtest breaks out at Dilley immigration detention facility holding 5-year-old Liam RamosA protest broke out Saturday at the ICE-run South Texas family detention complex in Dilley, where five-year-old Liam Ramos is being detained.

Katie J. reposted

Emma 🛏️♿🌱☮️♻️🍉
@veganmua.bsky.social

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

thecanary.coAn NHS hospital is starving a severe ME patient and has now stopped giving her fluidsSavannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk
Katie J.
@kjohnstone.bsky.social

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

A 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.

Katie J. reposted

Harsha Walia
@harshawalia.bsky.social

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:

Katie J.
@kjohnstone.bsky.social

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.

Aurin Chowdhury MPLS City Council Member W12@aurinmpls.bsky.social

-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!

Katie J.
@kjohnstone.bsky.social

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

Katie J.
@kjohnstone.bsky.social

“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“Have you considered that it could be burnout?”—psychologization and stigmatization of self-reported long COVID or post-COVID-19 vaccination syndrome - BMC MedicineBackground 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...
Katie J.
@kjohnstone.bsky.social

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 post is unavailable.
Katie J.
@kjohnstone.bsky.social

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.

Emily Mendenhall@emendenhall.bsky.social

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

Katie J.
@kjohnstone.bsky.social

Wessely also used the tactic of 'overloading' - sending a 17 page message that would take a great deal of time and energy to engage with. He sent it to the publisher, not the author, knowing the publisher would be less savvy to this kind of trick and more likely to cave to intimidation.

Katie J.
@kjohnstone.bsky.social

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.

Katie J. reposted

Ana Marie Cox
@anamariecox.com

I know people on Bsky know this but I hope it filters out: The feds are OCCUPYING the Twin Cities. This is a blockade, a siege. They are shutting down economic and civic activity. They are conducting "papers please" stops. They are criminalizing being a bystander/witness. You could be next.

Katie J. reposted

Molly White
@molly.wiki

when ICE asks you questions about your neighbors, you've never met your neighbors in your life. you've never even seen them from afar. neighbors? what neighbors?

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