iiinova — where your digital self keeps evolving

Reposted by Alex

In 3 months, I’ll get another major neurosurgery: Craniocervical Fusion, Extradural Decompression of the LLCT/MTH, Bilateral C1 Tubercle Resection This procedure will be out-of-state, costly and have a long recovery Please donate and boost! Ty www.gofundme.com/f/help-emily...

gofundme.com

Donate to We've got your back! Get Emily spine and brain care, organized by Jess Smolinski

*PLEASE SHARE even if you can't donate* Hello, everyone! This f… Jess Smolinski needs your support for We've got your back! Get Emily spine and brain care

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Alex @admiringbog.bsky.social · 3h

Oh interesting, I had to cut down on my electrolytes because they can make IIH worse and my OH symptoms stayed the same. It felt like they got a bit worse at first and then back to baseline.

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Alex @admiringbog.bsky.social · 5h

Don’t lie to your patients 🙃

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Alex @admiringbog.bsky.social · 5h

I rarely find that supplements help at all. Did you stop electrolytes?

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Elke Hausmann @drelke.bsky.social · 13/10/2026

I don’t why I’m still shocked but the fact that it seems that in 2025 a patient with these symptoms never even hears the term #LongCovid (or #ME) from a doctor is deeply upsetting. Reactivation of EBV is common in LC. This could well be LC. How should we ever know now how many people have LC?

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Elke Hausmann @drelke.bsky.social · 13/10/2026

Yes, we know… #LongCovid #ME www.theguardian.com/society/2026...

Researchers found 43% of women reported being told their condition was down to a psychiatric cause compared with a third of men (33%).
A third (34%) of women also reported having symptoms misdiagnosed as psychosomatic - meaning they were triggered or worsened by stress or anxiety - compared with 22% of men.
Overall, after accounting for factors including age, disease group, continent and household finances, researchers said women were 46% more likely to report having received a psychiatric misdiagnosis, and 74% more likely to report a psychosomatic misdiagnosis than men.
Researchers also found women reported much longer periods between the onset of symptoms and receiving a diagnosis, as well as more healthcare consultations. Among men, the most frequently reported time to diagnosis was less than three months. Among women, it was one to two years.

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Richard Vallée @richardvallee.bsky.social · 12/10/2026

Somehow every country is pretending that it's only happening in that country, and nowhere else, despite all of them knowing it's happening everywhere. It was predicted, it was documented, and still they are pretending not to know, because the medical profession is complicit in this Big Lie.

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Adam @abrokenbattery.bsky.social · 11/10/2026

“I can’t even get dressed by myself anymore or press buttons or things like that.” 9 year old Annabelle describes the impact of #MECFS which she developed following Covid, and how exertion can make her symptoms worse. #LongCovid

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Alex @admiringbog.bsky.social · 12/10/2026

Wow, better things are possible.

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Dr Noor Bari @njbbari3.bsky.social · 12/10/2026

Er… Yes. Yes I can tell you that there has been a massive blowout in illnesses in the last few years, although for NZ it would only account for the time after C19 was introduced into the population.

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Charlotte @fireantprincess.bsky.social · 11/10/2026

“are we the baddies?”

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Alex @admiringbog.bsky.social · 10/10/2026

The half my life mark hit me pretty hard and then the 20 year mark as well.

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sarah boothby @swastrosarah.bsky.social · 09/10/2026

Justice4me.uk lawyers have asked me for evidence of my submissions to DHSC and NHS England 2022 - ongoing. I have obliged; why would I not? What Maeve and I went through has not stopped, despite a 3 year inquest and 6 national institutions being cited in the Prevention of Future Deaths report 2024.

justice4me.uk

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Dr Noor Bari @njbbari3.bsky.social · 09/10/2026

It’s a well established fact. Highly transmissible airborne pathogens need layered mitigations… which is why we ditched most of it and left those at most risk with almost nothing. 🤡

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Alex @admiringbog.bsky.social · 09/10/2026

And then I find out it is life-threatening. #ME/CFS

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Alex @admiringbog.bsky.social · 08/10/2026

Hard collars can raise intracranial pressure and that can affect coordination. Interested to know if you figure it out.

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Ginger Billie @gingerbillie.bsky.social · 07/10/2026

When I told my neurologist I have trouble swallowing and finishing meals sometimes from fatigue she looked at me and said, “Do you have anxiety around eating?”. I looked her in the eye and said, “No, there is no anxiety or disordered eating.“ I was livid. 😡

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Adam @abrokenbattery.bsky.social · 07/10/2026

“You’re fighting the illness, but then you’re fighting every health professional.” Hannah was struggling to digest food and losing weight, but healthcare professionals thought she had an eating disorder. 8 years later, this is still happening to people with severe #MECFS.

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Alex @admiringbog.bsky.social · 06/10/2026

Interesting article that really should have mentioned ME/CFS. It gives the impression that PEM wasn’t a thing before COVID.

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Alex @admiringbog.bsky.social · 06/10/2026

It’s a horrifying diagnostic process. My doctors were clueless until signs of endometriosis showed up on an ultrasound. And knowing now that it often doesn’t show up on scans makes me wonder why we were so reliant on the ultrasound!

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Chloé de Canson @chloedecanson.bsky.social · 05/10/2026

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.

Screenshot of the header of a published paper:

Studies in History and Philosophy of Science

Patient's knowledge, doctor's ignorance: The production of knowledge about myalgic encephalomyelitis

Chloé de Canson

Department of of Theoretical Philosophy, University of Groningen, Oude Boteringestraat 52, Groningen, 9712 GL, the Netherlands

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Nicole Bedera @nbedera.bsky.social · 01/10/2026

All of this. I also want to add that, in my research, I found that a lot of “inconsistencies” in a victim’s story actually came from gender bias affecting investigators’ record keeping and interview methods.

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Professa Murray @kalimurray.bsky.social · 03/10/2026

What basic research is in science: it is looking—for years—at the spit of toad, or the quiet collection of data over a child’s cough. I will explain it another way: it is the Lionel Messi of science. It is sitting back quietly and then all sudden: boom, a swift innovation that changes our lives.

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Alex @admiringbog.bsky.social · 04/10/2026

I enjoyed this, beautiful like a painting kind of movie.

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Elly Brosius, MS @ellybrosius.bsky.social · 01/10/2026

The preprint "A Mechanical Basis: Brainstem Dysfunction as a Potential Etiology of #MECFS and #LongCovid" now has over 100 votes in the Popular Preprints of the Decade Award voting. You can vote for it and others daily until 11/30/2026. @renegaderesearch.bsky.social

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Alex @admiringbog.bsky.social · 02/10/2026

Yes, follow ups! I suspect that this is probably fine for people on the milder end and gets a lot more dangerous the more severe they are.

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Lane🔻 @lane1312.bsky.social · 01/10/2026

With moderate ME/Cfs, if I can do a job it’s likely my symptoms will get worse for doing too much physically or mentally. Though, I need a job to live. There’s no disability support for me in Texas. I don’t know what to do anymore. I’m so angry and frustrated

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Adam @abrokenbattery.bsky.social · 01/10/2026

“I was just horrified… The most heartbreaking stories… Treatment is absolutely appalling for patients.” @georgemonbiot.bsky.social speaking to @davetuller1.bsky.social about the hundreds of messages he received from people around the world with #MECFS about their experiences of treatment.

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Explicitly Anti-Vaxx @bellamyj.blacksky.app · 01/10/2026

Choosing to ignore the awful words of the World's Worst People has brought so much peace to my life.

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Alex @admiringbog.bsky.social · 01/10/2026

Wow, I love it when medicine works. That’s great.

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Alex @admiringbog.bsky.social · 29/09/2026

This is a big theme in disability: the conflation of ‘I can’t do something’ with ‘I don’t want to do something.’

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Miles W. Griffis @mileswgriffis.bsky.social · 29/09/2026

"John Richard Green, who is imprisoned in Texas, wrote that, w/ Long COVID, his health is “more messed up than the floor of a New York cab...Now I am bedbound, sick, and all alone." Vital feature by @octoberk.bsky.social about the disease's invisibility in prison. thesicktimes.org/2026/09/29/i...

thesicktimes.org

I interviewed five people with Long COVID in prison. They are invisible in the system. - The Sick Times

While there are no data sources on Long COVID in prison, experts suspect rates of the disease may be higher there than in the general population. They face high reinfection risks and poor access to me...

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Michael @shevekuk.bsky.social · 29/09/2026

Ridiculously there's bugger all to zero compulsory training in the NHS about ME/CFS. If it were, say, MS, people would be in uproar. So I'd appreciate it if you sign this futile attempt at chang- I mean, this petition c.org/t8D7hZ9Lh5

c.org

Sign the Petition

Make ME/CFS learning mandatory for NHS staff

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Alex @admiringbog.bsky.social · 29/09/2026

For decades, people with #ME/CFS have been reporting the flu as a trigger.

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Alex @admiringbog.bsky.social · 29/09/2026

My understanding is that the provinces are not required to adopt it. I guess we’ll see.

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Alex @admiringbog.bsky.social · 29/09/2026

Lol my 14 year old niece wanted me to read it and tell if I thought it was appropriate for her. 😬 I told her to maybe give a few years.

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Alex @admiringbog.bsky.social · 29/09/2026

Being able to eat without it causing pain: 10/10

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C.H. Romatowski @chromatowski.bsky.social · 28/09/2026

It’s not a story that anyone wants to hear but in February 2018 I caught a friend’s sore throat. While he recovered fully, I just kept declining, and by June I was 99% bedbound. Eight years later, that’s where I remain. We desperately need better defenses against all respiratory viruses.

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Alex @admiringbog.bsky.social · 28/09/2026

It’s weird to read this stuff in an era that hasn’t really learned.

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Alex @admiringbog.bsky.social · 28/09/2026

I saw someone post that it was funny that the story originally came from a right wing, but no one cared caused he’s awful? So close. 😬

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Alex @admiringbog.bsky.social · 28/09/2026

I think it’s in his book Psychology’s Quiet Conservatism, in one of the sections on Long Covid or ME/CFS. He talks about the book in this interview. youtu.be/0K75eNkaL4Q?...

youtu.be

Interview with Brian Hughes, professor of psychology and University of Galway in Ireland.

YouTube video by David M Tuller

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emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 27/09/2026

Just listened to this full interview & it’s fantastic. @georgemonbiot.bsky.social doesn’t mince words, reminding us the #GreatestMEdicalScandal of the century is not just about neglect, it’s abuse by the medical system & complicity from all of society. Full interview (9 mins): youtu.be/H2rRf_f2hJs

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Alex @admiringbog.bsky.social · 28/09/2026

Another condition that should get more funding. People with ME/CFS are also more likely to have migraine.

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