iiinova — where your digital self keeps evolving

Reposted by Fen van Rhijn, MD

emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 26/09/2026

I’m only seeing people with ME or Long Covid sharing this. If you’re not affected, can you please read it & share? Ableist propaganda goes viral all the time, which encourages outlets to publish more of it. Can we please make the truth go viral instead?

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Reposted by Fen van Rhijn, MD

Iris van Rooij 💭 @irisvanrooij.bsky.social · 26/12/2025

Seems relevant today, as any day

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Fen van Rhijn, MD @fvrhijn.bsky.social · 06/12/2025

This is doing the rounds in NL. Here's some food for thought. 🧵

Screenshot of the paper title with all the authors (link in the thread)

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Fen van Rhijn, MD @fvrhijn.bsky.social · 27/10/2025

It's 2025 and we are still using the 6 minute walking test as a primary outcome measure in long covid clinical trials. Yikes.

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de Bibliotheek Gouda @biebgouda.bsky.social · 22/09/2025

Vanaf vandaag elke week Antifa-leestips (voor het hele gezin) uit de collectie van de bibliotheek. We beginnen met de stripbewerking van HET DAGBOEK VAN ANNE FRANK door David Polonsky. #leesvaardig #informatievaardig

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Sue Poncin @sueponcin.com · 15/09/2025

One Covid infection = Long Covid 4.5 years of “exhibiting abnormally low activation in the parietal lobe” ✅ problems with coordination, movement, and balance ✅ poor hand-eye coordination and spacial awareness ✅ inability to find the names of objects ✅ difficulty with multitasking #disabled

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Billy Hanlon @bhanlon15.bsky.social · 03/09/2025

Would love to see RECOVER-TLC & RECOVER prioritize these findings. ➡️ Oxygen extraction issues ➡️ Preload failure ➡️ Reduced V̇O2peak ➡️ Skeletal muscle O2 diffusion

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Dianna Gunn Does (Fictional) Murders 🇨🇦 @diannalgunn.bsky.social · 16/08/2025

JK Rowling has literally made it impossible for me and my partner to travel to Scotland, my spiritual home I've wanted to live in since I was 10 I only wish upon her what she wishes for every trans person: a permanent disappearance from public life

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Fen van Rhijn, MD @fvrhijn.bsky.social · 14/08/2025

Can we try not to undermine all the international guideline processes? I'm so much done with the continued propagation of exercise as a cure for PEM. No, tolerance will NOT increase even if you stay within your energy limits. PwME have been saying this for DECADES.

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Reposted by Fen van Rhijn, MD

Jed @jedediyah.com · 09/08/2025

So you're going to "teach AI" this year. That's great! Start with "How Eugenics Shaped Statistics" nautil.us/how-eugenics... #mtbos #ITeachMath #AIinEd

nautil.us

How Eugenics Shaped Statistics

Exposing the damned lies of three science pioneers.

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Fen van Rhijn, MD @fvrhijn.bsky.social · 06/08/2025

Could this be why our T cells are fucked? Review by people at my previous job. I had no idea that anything else than antigen priming and cytokine communication (and recently, autonomic nerve innervation) guided T cell dynamics www.sciencedirect.com/science/arti...

sciencedirect.com

Acetyl-CoA subcellular compartmentalization regulates T cell adaptation

Upon activation, naïve T cells undergo rapid proliferation and differentiation, giving rise to clonally expanded populations specifically tailored for…

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Reposted by Fen van Rhijn, MD

Joshua Livestro @joshualivestro.bsky.social · 30/07/2025

“Boomers bought houses at a time when saving a couple of pounds per day taking a packed lunch to work would give you a house deposit in eight years. For a millennial this would take two centuries…”

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Fen van Rhijn, MD @fvrhijn.bsky.social · 29/07/2025

Yay finally the colleagues seem to be waking up!

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Inge ZV (she/her) @ingezv.bsky.social · 22/07/2025

Ik roep het nog maar een keer: Doordat ik erg ziek ben kan ik niet naar #Castlefest. Daarom verkopen wij onze kaartjes. 4 dagen toegang + camping + campingcabin met relaxpakket + parkeerkaart. Voor € 975 plus € 120 borg. Die krijg je terug als we hem terugkrijgen. De cabin kan niet via

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Fen van Rhijn, MD @fvrhijn.bsky.social · 22/07/2025

I wonder why everyone is more concerned about courageous doctors prescribing off label treatments for long covid than about how we as patients are gaslit and left to rot in our beds. 1/

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Fen van Rhijn, MD @fvrhijn.bsky.social · 12/07/2025

I discovered this beautiful piece by Andrea Casarrubios for solo cello. It was written in 2020 for frontline workers and it sooo directly hits into the feels! youtu.be/SBzzfhI9xRM Turns out this is a whole genre of music. 🧵

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Fen van Rhijn, MD @fvrhijn.bsky.social · 02/07/2025

I can't even like where to begin with everything that's wrong with that AHS position statement! Don't you think that pwME tried exercising themselves out of it?!?

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Fen van Rhijn, MD @fvrhijn.bsky.social · 02/07/2025

I hate hate hate it that doctors are still trying to make our lives worse at every turn they can. Whyyyyyy. How hard is it to listen to patients?

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Fen van Rhijn, MD @fvrhijn.bsky.social · 23/06/2025

When you open a substack newsletter you signed up for years ago and never read and are suddenly met with the most vile transphobic vitriol. Yikes. Anyone who calls the Cass review a good systematic review, please unfollow me.

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Reposted by Fen van Rhijn, MD

PhillyPhile215 @phillyphile215.bsky.social · 04/06/2025

#pwME do we think that infamous flawed trial might actually be shown for the bad science it is? 👀

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Autistic Science Person @autsciperson.bsky.social · 12/06/2025

"Of respondents who had transitioned, 9% had gone back to living as their sex assigned at birth at some point in their lives, at least for a short while—but in almost every single case, the reason was anti-trans discrimination from one’s family, friends, or community."

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Tom Kindlon @tomkindlon.bsky.social · 10/06/2025

From @meresearchuk.bsky.social New findings highlight the need for tissue biopsy studies to investigate pathogen reactivation in people with ME/CFS. Find out more: bit.ly/45ntdNV #MECFS #PathogenReactivation

bit.ly

New findings highlight the need for tissue biopsy studies when considering pathogen reactivation in ME/CFS.

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Fen van Rhijn, MD @fvrhijn.bsky.social · 10/06/2025

I'm exploring options to import Virx to the Netherlands. Anyone interested? Please send a DM so I can add your name to the list and make an estimate of how much to order. (No need to dm if you replied via Instagram).

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Eric Topol @erictopol.bsky.social · 04/06/2025

Microvascular obstruction is known to be a #LongCovid feature. Now a potential mechanism found for the obstruction induced by death of endothelial cells->sticky red blood cells. Which wouldn't respond to blood thinners or anti-platelet Rx www.nature.com/articles/d41... www.nature.com/articles/s41...

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Laurel Krahn @windowseat.bsky.social · 02/06/2025

“It is destabilizing, frustrating and enraging to feel like my daughter, who wasn’t even 18 months old, has done more for public health than some people who are now currently in charge of it,” Giglia said.

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Fen van Rhijn, MD @fvrhijn.bsky.social · 01/06/2025

Net een fantastische harples van @kathelijne.bsky.social ! Voor alles waar ik tegenaan loop heeft ze n oplossing! Blijft echt magisch hoe de juiste aanwijzingen echt iets kunnen transformeren.

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Shematologist, MD @shematologist.medsky.social · 28/05/2025

And in case you were under the impression it’s over, last month an average of 350 people per week died of #COVID in the US.

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Reposted by Fen van Rhijn, MD

Ursula @ladyofsardines.bsky.social · 20/05/2025

The first hundred pages. The first eighteen pages.

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Prof Ros Gleadow FAA 💙💚 @rgleadow.bsky.social · 16/05/2025

"The... NICE no longer recommends therapies based on deconditioning and exercise avoidance theories ...recognising that these can cause people with ME/CFS to become more severely unwell...my qualitative data illuminates additional harms provoked by these approaches to, and beliefs about, ME/CFS" 👏

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Fen van Rhijn, MD @fvrhijn.bsky.social · 10/05/2025

Med school: you need to learn the Krebs cycle by heart! And all the inborn errors of metabolism too! Medical professionals: won't even read a paper about metabolic disturbances in ME.

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Reposted by Fen van Rhijn, MD

María Richardson @diatoma.bsky.social · 09/05/2025

This is my 9th year advocating for #MyalgicEncephalomyelitis #MillionsMissing #MEAwarenessMonth. My health has only worsened since then (9 years ago I was able to work FT! Now I can't even work PT and am mainly housebound), but I'm hopeful because: (1/6)

A red poster with the hashtag #MillionsMissing at the top. Below that the letters SOS spelled out with 18 selfies of a white Mexican woman lying down, often in the dark and wearing an ice hat, sometimes with a beloved orange cat.
Below that some key facts:
- M.E. has one of the lowest Quality if Life measurements of any disease
- There are zero FDA approved drugs for ME
- NIH M.E. funding is extremely low relative to disease burden
- Even this limited funding is currently at risk
#DisabilitySOS
#GreatestMEdicalScandal
#MyalgicEncephalomyelitis
#WorldMEDay

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Reposted by Fen van Rhijn, MD

Amber Ying 應緣 @amberying.com · 06/05/2025

CN: mention of self-harm in article What this article fails to mention is that LLMs like ChatGPT or AI companions just reflect back what the user wants to talk about. Charitably, these AI are just us talking to ourselves, or less so, these AI are "yes-men".

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Fen van Rhijn, MD @fvrhijn.bsky.social · 06/05/2025

This exactly! Prescribing mestinon 10mg twice daily isn't really going to help anyone.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 04/05/2025

FWIW, same convo with ppl taking pyridostigmine several times, now. Doc knows "start low & go slow" but doesn't know frequency. Pt experiences high acetylcholine/low acetylcholine on a loop Conclusion: "pyrido doesn't work for me" I want drs to look up its use in myasthenia gravis! I beg

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Sarah Gilbert @sarahagilbert.bsky.social · 26/04/2025

The mods of r/ChangeMyView shared the sub was the subject of a study to test the persuasiveness of LLMs & that they didn't consent. There’s a lot that went wrong, so here’s a 🧵 unpacking it, along with some ideas for how to do research with online communities ethically. tinyurl.com/59tpt988

tinyurl.com

From the changemyview community on Reddit

Explore this post and more from the changemyview community

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Fen van Rhijn, MD @fvrhijn.bsky.social · 27/04/2025

Why can't we just accept that exercise is not a cure for PEM? It keeps popping up, often disguised as pacing but it's actually graded exercise. The whole point of GET is that it uses super tiny increments. Like 30s-1min. That's still unsafe and puts people at risk. Please stop pushing GET!

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Long Covid Advocacy @longcovidadvoc.com · 23/04/2025

If exercise worked we'd genuinely know by now Studies that claim success through 'small wins' - that is essentially bias - does not mean exercise is the answer But, unfortunately, we have a research community who cannot move on from lifestyle interventions

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Long Covid Advocacy @longcovidadvoc.com · 24/04/2025

If a researcher or clinician is still invested in exercise or 'pacing up' it shows: 👉 devastating alienation from the patient experience 👉 wilful disengagement from the scientific research 👉 career, ideology & 'being right' is more important than the patient #wrongparadigm

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Noortje van Lith @lithnoortje.bsky.social · 18/04/2025

Ik heb een korte animatie gemaakt naar aanleiding van mijn brief aan minister Keijzer. #WonenZonderDrempels Willen jullie dit delen? Alvast bedankt!😊 *Geluid aan voor mijn voice-over.

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What The Trans?! 🏳️‍⚧️ @whatthetrans.com · 19/04/2025

The sun is out, and there must be thousands here. This is giving me life.

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Hedge Wizardly 🌱🌈 @hedgewizardly.bsky.social · 16/04/2025

JKR funded the campaign group behind all this btw. This is why we beg you to stop engaging with Harry Potter media.

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Dr. Hilary Agro, PhD 🍄 @hilaryagro.com · 16/04/2025

I can't emphasize enough that the most important thing journalists can do right now is publish exactly this kind of article

Headline: ICE came for their neighbor so these Tennesseans formed a human chain to protect him

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Jamie McKelvie @mckelvie.bsky.social · 16/04/2025

This is where your Harry Potter money goes

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Fen van Rhijn, MD @fvrhijn.bsky.social · 16/04/2025

@davidvergucht.bsky.social hoi! Ik heb een vraagje over beschikbaarheid van med in België, mag ik je een dm sturen?

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Samwise Masks @theailingwitch.bsky.social · 05/02/2025

When masks are illegal in public, disabled people are illegal in public.

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Xander Koolman NL @xanderkoolman.bsky.social · 12/04/2025

Tussen 2013 en september 2021 nam het aantal arbeidsongeschikte niet toe. Sindsdien wel. Wat is er toch gebeurd in 2020-21 dat hier aanleiding toe kan hebben gegeven?

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Naomi Harvey PhD @naomidharvey.bsky.social · 08/04/2025

I’m quoted in this important piece. I really hope that more patients can avoid unnecessary tilt table testing if they can take articles like this to their doctors. Many ppl warned me of the risks, but I didn’t feel like I could decline my doctors request for the test. I’ve not been the same since 💔

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