kjohnstone.bsky.social - Profile | ThreadSky | a Reddit-style client for Bluesky

amazon.com has randomly delayed my diamine oxidase delivery by 2 weeks. So I will spend the next 2 weeks incapacitated and in unspeakable pain. It's completely insane that the healthcare system doesn't know MCAS exists, and you have to rely on dodgy corporations to sell you needed medications.

submitted 5 hours ago • 1 comment

"People living with ME/CFS deserve the utmost urgency for biomedical research and optimal care. This is where hope lies." My "ME/CFS care must be grounded in lived experience and biomedical research" is out in the British Medical Journal/BMJ (a response to Miller et al) www.bmj.com/content/389/...

submitted 14 hours ago • 3 comments

Nice to see that Pod Save the UK's piece on protests against PIP changes mentioned ME quite prominently. @podsavetheuk.crooked.com www.youtube.com/watch?v=2RPK...

submitted 1 day ago • 0 comments

Any money you spend on Harry Potter stuff is directly supporting this www.them.us/story/jk-row...

submitted 1 day ago • 10 comments

submitted 3 days ago • 7 comments

I’m so sick of these stories. I’m exhausted, enraged & frustrated. Misogyny in medicine kills. The patriarchy kills. The health gap kills. We all have these stories. Some of us are lucky enough to survive, but many aren’t. Tell your stories. Keep screaming until this never happens again:

submitted 3 days ago • 15 comments

When you hear about so much terrible stuff, it's good to hear something good as well.

submitted 3 days ago • 0 comments

Hey @lastweektonight.com @thedailyshow.com @weeklyshowpodcast.bsky.social a concrete example of #GreatestMEdicalScandal shenanigans last week in @bmj.com. Read this 🎯 rebuttal to better understand…and join us to fight this stigmatizing, harmful narrative. 👇

submitted 7 days ago • 2 comments

A new study confirms what so many already know: being dismissed by doctors can be as traumatic as illness itself. Patients report four kinds of harm: shame, lost trust, delayed diagnosis, avoiding care. This is what I tried to name in The Invisible Kingdom: www.mycentraljersey.com/story/news/h...

submitted 8 days ago • 0 comments

Honored to co-sign this response—led by the brilliant @DavidPutrino—to the BMJ, pushing back on outdated views of ME/CFS. As I wrote in The Invisible Kingdom, disbelief can be as harmful as the illness itself. We need science, not stigma. 🔗 www.bmj.com/content/389/...

submitted 7 days ago • 1 comment

Interesting video about how 2020 saw unprecedented social programs to help ordinary people, later followed by a massive propaganda campaign to make us forget it ever happened. www.youtube.com/watch?v=zXrj...

submitted 9 days ago • 0 comments

Fantastic response to the BMJ's shockingly bad commissioned opinion piece about ME/CFS.

submitted 12 days ago • 0 comments

New post: The medical world has two opposing views of mast cell activation syndrome (MCAS). mecfs.substack.com/p/mcas-a-tal...

submitted 12 days ago • 0 comments

New post: Mast cell activation syndrome (MCAS): what it is, how to tell if you have it, and how to treat it (with or without a doctor's help). mecfs.substack.com/p/mast-cell-...

submitted 15 days ago • 1 comment

If you have MCAS and can only eat a restricted diet, I'd love to know which foods are safe for you?

submitted 20 days ago • 1 comment

its so funny how economists will be like noooo its not fair china keeps reinvesting its wealth back into its economies instead of giving it all to like 20 guys, thats cheating 😭

submitted 23 days ago • 36 comments

You don't need to be a US citizen to sign.

submitted 23 days ago • 0 comments

Hey, folks-- take a moment to sign on to this request to fund the #MECFS Roadmap! 🧪

submitted 23 days ago • 1 comment

1) OMG we did it‼️‼️ In this film for #MEawarenessmonth, five medical doctors open up about living with #PAIS/#IACC conditions like ME, #longCOVID, and chronic #Lyme. It’s a format that I believe has never been shown before. They speak candidly about their experiences youtu.be/J0ywwLIfH_w?...

submitted 27 days ago • 25 comments

New video: I just moved from the UK to Canada and I thought it would be interesting to compare the two healthcare systems as a person with ME/CFS! youtu.be/qdHh2mx-yCQ

submitted 29 days ago • 1 comment

BREAKING: Police just surrounded Rev. William Barber, prominent activist and pastor, as he and others prayed in the U.S. Capitol Rontunda. Police then expelled everyone (including press!) from the Rotunda to (presumably) arrest them. I've covered protests here a lot. Never seen anything like it.

submitted 30 days ago • 543 comments

PLEASE don’t buy into Amazon’s booksale this week. They are intentionally trying to eat into profits from Indie Bookstore Day this weekend, a really important annual event for our important community institutions. Check out your local fave or bookshop.org.

submitted 35 days ago • 47 comments

Well, this is heartbreaking.

submitted 37 days ago • 0 comments

If you have a minute to spare today ⬇️

submitted 38 days ago • 12 comments

New Substack post: 'Medical gaslighting: a working definition and some reflections'. mecfs.substack.com/p/medical-ga...

submitted 41 days ago • 0 comments

Before the election, I warned that there is no safe haven under authoritarianism. If they can ship Kilmar Abrego Garcia to a foreign prison—accused of no crime, with no trial—they can do it to anyone. Americans of conscience must stand against this now.

submitted 42 days ago • 1857 comments

My hobby: finding YouTube channels that work well if you play them at the same time. Chillhop Radio goes well with Wes Cecil. www.youtube.com/watch?v=5yx6... www.youtube.com/watch?v=mGCi...

submitted 54 days ago • 0 comments

This got a big dorky smile out of me.

submitted 54 days ago • 0 comments

Love this. And they copied the original sign so precisely.

submitted 56 days ago • 0 comments

WOW. Watch a constitutional law expert completely DEBUNK Republicans’ censorship crusade, while articulating exactly how Donald Trump is threatening freedom of speech. 🔥

submitted 64 days ago • 150 comments

I love this.

submitted 66 days ago • 0 comments

New information relating to the Independent Advisory Group appointed by Cochrane in 2020 regarding the review of exercise therapy for ME/CFS hbprojecttalk.wordpress.com/2025/03/13/i... From the latest Science for ME weekly update #MEcfs #CFS @hildabast.bsky.social

submitted 71 days ago • 0 comments

These are 'optimistic' figures and less than half of what Americans currently pay for the same things.

submitted 78 days ago • 30 comments

It's time for medical gaslighting to be recognized as a form of abuse. Doctors guilty of this should lose their license to practice medicine. Not knowing the answer is understandable, but wrongly telling a patient "it's all in your head" is abuse and should bring consequences.

submitted 84 days ago • 4 comments

Neil Riley, Chairman of the M.E. Association has resigned t.co/SfzBRiZVPJ

submitted 85 days ago • 1 comment

RFK Jr. Vows To Make Measles Deaths So Common They Won’t Be Upsetting Anymore theonion.com/rfk-jr-...

submitted 87 days ago • 163 comments

I tend to be very critical of BACME (British Association of Clinicians in ME/CFS), but they deserve kudos for taking a stand against the disastrous Cochrane review of exercise for ME/CFS. bacme.info/wp-content/u... @cochranecollab @CochraneLibrary

submitted 87 days ago • 0 comments