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kjohnstone.bsky.social
ME/CFS, and other things. (she/her)
116 posts 1,147 followers 536 following
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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:

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

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. 👇

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...

Honored to co-sign this response—led by the brilliant @DavidPutrino—to the BMJ, pushing back on outdated views of ME/CFS.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/...

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...

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

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

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-...

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

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 😭

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

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

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?...

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

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.

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.

Well, this is heartbreaking.

If you have a minute to spare today ⬇️

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

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.

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...

This got a big dorky smile out of me.

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

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

I love this.

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

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

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.

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

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

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

⚠️Attention #pwME Scoping survey for Australian Clinical Practice Guidelines for ME/CFS consultations.nhmrc.gov.au/clinical-pra... Open to everyone so I encourage #pwME & carers outside 🇦🇺 to provide input if they are able! #MyalgicEncephalomyelitis #MECFS **Please repost**

There's a wonderful letter to Cochrane about their outdated and harmful review of exercise as a treatment for ME/CFS, organised by @davidtuller1 and signed by a group of experts. virology.ws/2025/02/20/t...

Seems like it's no longer feasible for US media to criticize the government. I wonder if it'll become like Russia, where people go live in Europe in order to be able to criticize from the outside. www.youtube.com/watch?v=j4Xl...

Google Calendar has removed key cultural events from their site including: • Pride Month • Black History Month • Holocaust Remembrance Day • Jewish Heritage • Hispanic Heritage • Indigenous People Month

Are any other #pwME prone to white tongue / oral thrush, or is it just me? Is there anything to be done about it?