iiinova — where your digital self keeps evolving

Can anyone recommend an app to track heart rate over the course of a day? Ideally free, or at least not pricey.

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Amy Hoy @amyhoy.bsky.social · 05/06/2026

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

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Katie J. @kjohnstone.bsky.social · 07/05/2026

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%!

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Prof Deborah Lupton, MPH PhD @dalupton.bsky.social · 22/08/2025

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...

bbc.com

Long Covid patients gaslit by GPs, Surrey study finds

The University of Surrey study says patients faced "gatekeeping" of medical treatment from doctors.

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Katie J. @kjohnstone.bsky.social · 15/04/2026

Substack post: How common is Ehlers Danlos syndrome? It's surprisingly hard to find out. mecfs.substack.com/p/how-common...

mecfs.substack.com

How common is Ehlers Danlos Syndrome?

It's surprisingly hard to know.

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The Vertlartnic @thev.bsky.social · 10/04/2026

Doctor Very Confident He Is Right About You

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Katie J. @kjohnstone.bsky.social · 01/04/2026

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

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Katie J. @kjohnstone.bsky.social · 24/03/2026

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...

youtube.com

THIS IS ENDOMETRIOSIS: Finding Strength 🏆 BAFTA Winning Short Film

YouTube video by Short Frame: Award Winning Short Films

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Katie J. @kjohnstone.bsky.social · 10/03/2026

New substack post: "Freud's Hysteria, Part of the history of psychologizing physical illness". mecfs.substack.com/p/freuds-hys...

mecfs.substack.com

Freud's Hysteria

Part of the history of psychologizing physical illness

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Katie J. @kjohnstone.bsky.social · 25/02/2026

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...

mecfs.substack.com

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!

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Katie J. @kjohnstone.bsky.social · 23/02/2026

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.

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Adam @abrokenbattery.bsky.social · 23/02/2026

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

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ME/CFS San Diego @mecfssd.bsky.social · 20/02/2026

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.

A megaphone announcing "Coming Soon 2025–2026 UCSD ME/CFS Essay Contest Winners" Help Us Amplify These Student Voices. We are seeking Media Coverage. Please message or email (info@mecfsSanDiego.com) with any contacts.

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Adam @abrokenbattery.bsky.social · 19/02/2026

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.so

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.

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Katie J. @kjohnstone.bsky.social · 12/02/2026

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

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

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Michiel @murtoz.bsky.social · 11/02/2026

@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

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WeRateDogs @weratedogs.com · 10/02/2026

we need to talk about that Ring Super Bowl ad

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Katie J. @kjohnstone.bsky.social · 02/02/2026

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

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Kristin Meekes @kmeekes.bsky.social · 28/01/2026

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

Unrest Feature Documentary (Original with English subtitles)

YouTube video by Unrest Film

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Emily Lowan (she/her) @emilylowan.bsky.social · 28/01/2026

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

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Katie J. @kjohnstone.bsky.social · 29/01/2026

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!

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High Priestess, Low Patience @cheriepriest.com · 27/01/2026

Just outside Seattle on I-5 🤘

An overpass occupied by people with signs, and a large banner between them that says, "Come for one, face us all." Because Fuck ICE, that's why. This is not my photo. I don't know who it belongs to.

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Puff the Magic Hater @mskellymhayes.bsky.social · 27/01/2026

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.org

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.

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Katie J. @kjohnstone.bsky.social · 27/01/2026

Neil Young is from my hometown, and he just took gave his entire music catalogue to Greenland! www.youtube.com/watch?v=n2Mt...

youtube.com

Neil Young - Harvest Moon [Official Music Video]

YouTube video by neilyoungchannel

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Katie J. @kjohnstone.bsky.social · 25/01/2026

The best compliment in the world is when someone discovers your account and likes a bunch of old posts. 😀

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Emma 🛏️♿🌱☮️♻️🍉 @veganmua.bsky.social · 23/01/2026

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.co

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

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Katie J. @kjohnstone.bsky.social · 24/01/2026

I've sent an email, I used the one from the Canary article and changed it a bit. This is so heartbreaking. 💔💔💔

A screenshot, just black text on a white background.

TO ben.travis@nhs.net
SUBJECT Urgent: Savannah Victora-May

Dear Mr Travis,

I'm writing to ask you to take urgent action to save a patient in your care at Queen Elizabeth Hospital, Savannah Victora-May. Savannah has very severe myalgic encephalomyelitis (ME), a chronic neuro-immune disease. Sadly, although ME is both very common and very serious, patients face stigma and are often dismissed and disbelieved, sometimes with tragic consequences.

Please act immediately to ensure Savannah receives intravenous fluids. Without these she may die.

Please engage with experts in ME to find the best care plan for Savannah. I understand that NHS hospitals generally do not work with private doctors. However as there are currently no ME specialists working within the NHS, you should make an exception in this case.

Most importantly, please acknowledge that Savannah's lived experience makes her an expert in her own condition. Your staff must respect her agency to refuse treatments which she knows will cause her to deteriorate further. They must listen to her and respect her wishes when she communicates the care she needs.

Unfortunately, in the past the lack of medical knowledge and training on ME has led to dangerous relapse and even death. The death of Maeve Boothby O'Neil a few years ago led to a great deal of media attention and an inquiry which recognized that hospitals do not provide adequate care to these patients. Please do not allow a repeat of such tragedies.

Yours sincerely,
Katie Johnstone

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Harsha Walia @harshawalia.bsky.social · 23/01/2026

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:

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Katie J. @kjohnstone.bsky.social · 23/01/2026

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.

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Indivisible ❌👑 @indivisible.org · 23/01/2026

What we’ve seen in Minnesota should make you furious, but it should also inspire you.

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Katie J. @kjohnstone.bsky.social · 22/01/2026

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

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Katie J. @kjohnstone.bsky.social · 20/01/2026

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.

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Katie J. @kjohnstone.bsky.social · 18/01/2026

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.

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Katie J. @kjohnstone.bsky.social · 18/01/2026

Oh, I do love this. They weren't wrong back in 1979.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 15/01/2026

What disability and illness advocacy groups are doing good work in Minnesota right now in terms of direct aid and background activism/advocacy?

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Katie J. @kjohnstone.bsky.social · 15/01/2026

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.

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Katie J. @kjohnstone.bsky.social · 15/01/2026

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...

youtube.com

Chronisch krank: Wenn das Leben durch ME/CFS verschwindet I 37 Grad

YouTube video by 37 Grad

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Ana Marie Cox @anamariecox.com · 14/01/2026

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.

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Molly White @molly.wiki · 13/01/2026

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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Katie J. @kjohnstone.bsky.social · 12/01/2026

Yup, we are 100% living in a science fiction story.

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Congresswoman Ayanna Pressley @pressley.house.gov · 12/01/2026

My friend Alice Wong was a civil rights & disability justice activist, community organizer, & author. She was unapologetic in her pursuit of building a more just world & shining a light on issues society hesitated to address. She is deeply missed, but her legacy carries on.

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valebodi.bsky.social @valebodi.bsky.social · 12/01/2026

Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome @sunsopeningband.bsky.social Todd E. Davenport, @scheibenbogen.bsky.social Carmen Scheibenbogen, Mark A. Zinn, Mary Dimmock, Janet Stone, Karl J. Tronstad, Øystein Fluge, Jonas

nature.com

Client Challenge

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Kathryn @kathrynas.bsky.social · 11/01/2026

The @uwofa1 - University of Western Ontario Faculty Association - is quickly becoming a leader in post-secondary education messaging about the equity implications and importance of masking as an integral layer of C19 and flu mitigation. Let’s show them some love, folks! ❤️🙏

Black background with white text and an elephant wearing a mask towards the upper left-hand corner:

“Spotlight: Masking as an Equity Practice
Let's talk about the Elephant in the Room...high-quality masks are a tiny tool with big equity energy this respiratory illness season. Coughing, sneezing, fever, chills, and aches...
Ontario's wastewater confirms that it's rough out there!
Take it from the Middlesex-London Health Unit (Nov. 25 2025): "Staying home when feeling unwell and encouraging others to do the same helps us protect each other from viral illnesses. Frequent handwashing, covering coughs, socializing in well-ventilated spaces and wearing well-fitted face masks all contribute to reducing the risk of infection." Well-fitting respirators (N95s, KN95s, or equivalent)
significantly reduce the spread of illness. That matters not just for individual health, but for equity..”

Text continues: “Not everyone can afford to get sick. Missed pay, caregiving responsibilities, disability, chronic illness, or precarious work mean that "just catching a bug" can have very real consequences. Masking helps keep shared spaces safer for everyone - especially those most impacted when illness spreads.
When we choose high-quality masks in crowded indoor spaces, we reduce barriers to participation and help make meetings, classrooms, workplaces, and public spaces more accessible.
Not only are they effective at helping to prevent illness, but wearing a mask is also a visual indication of a commitment to equity. Practical, protective, and prosocial.
Keeping our campus safe during respiratory illness season also depends on having enough CUPE workers and resources to maintain clean, well-supplied, and healthy spaces. Access to soap, paper towels, clean washrooms, masks, sanitizer, and properly maintained buildings is essential to preventing the spread of illness.”

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Katie J. @kjohnstone.bsky.social · 09/01/2026

Thanks for this detailed and thoughtful 🧵, it's incredibly valuable that you picked up on and described all the nasty little tricks the author used to misrepresent ME and Long Covid and other illnesses.

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Katie J. @kjohnstone.bsky.social · 09/01/2026

Oh crap. I'll admit I thought this looked like a good one and shared a couple of posts about it. Yikes.

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