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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Fen van Rhijn, MD @fvrhijn.bsky.social · 14/09/2026

Die ervaring heb ik ook! Daarom gebruik ik het gewoon lekker niet. Maar ja. De rest van de wereld doet dat wel en wil dan ook nog dat ik hun ai braaksel ga redigeren...

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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 · 10/12/2025

Wat fijn dat je een merkbare vermindering van de klachten hebt. Herken je de bijwerkingen ook, of viel het voor jou mee?

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

Good question. Their hypothesis is that it modulates inflammation. They'll indeed gradually have less PEM and function a bit better (if it works). I've also spoken to plenty of people who were in the trial and for whom it didn't work.

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

Adding that the trial was funded by the private clinic where the trial took place.

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

Ik heb inderdaad best wat zorgen die ik niet in het draadje heb vermeld, heb me gehouden aan wat je kan lezen in de paper. Miss moet ik hun conflict of interest er ook bij zetten.

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

So, summary Rationale for the combo of lidocaine and hydroxypropylbetacyclodextrine unclear Modest effects Potential safety concerns Open label This is not the cure. Further research into alternative admin routes (transdermal? Sublingual?) could be interesting.

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

Authors do not think this is very serious. While the symptoms of intravascular admin they describe are indicative of CNS toxicity.

Screenshot of paper text about the adverse advents.

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

We need to talk about adverse events. The subc fibrosis is not mentioned as an adverse event in the national formulary. Its present in 63%! 33% accidentally injected intravascularly, which is dangerous. Authors say this decreased by 83% (of what) but it's still a major risk.

Screenshot of the table depicting the various adverse events (see paper)

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

Reasons for stopping. 14 stopped due to non effect. Another 14 due to adverse events.

Screenshot of the paper text listing why people stopped

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

Important: 29%, 30 people stopped. (So I really don't understand n=103 in the graphs). They probably carried the last known value forward, but then I'd like to see a sensitivity analysis. 67/103 people may be missing... (Bc some people hadn't reached 36 weeks yet)

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

Secondary outcome measure. 30 symptoms scored daily on scale 1-7. Some significant improvements, but what do they mean? PEM goes from 5.5/7 to 3.5/7. Important: 37 people had not reached 36 weeks yet (but they mention n= 103 in all graphs...)

Screenshot of another figure depicting the course of several symptoms over time. Symptoms increase from -4 weeks to t=1 and then slowly decrease a bit.

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

Primary outcome measure: SF12 hrqol questionnaire. Small effect on physical functioning , moderate effect on mental functioning. Judge for yourself whether this is suitable in LC.

Figure 2 from the paper. It are graphs with the component score on the y acid and time on the x axis. You can see a small improvement in the physical component score and a slightly larger improvement in the mental component score

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

They tested lidocain with hydroxypropylbetacyclodextrine. This combo has not been evaluated before, not in vitro, in vivo or in volunteers. Open label study with 103 pwLC, WHO criteria (at least 2 months ill). Average was around 30 months.

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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 · 03/11/2025

Hmm I beg to differ de: prediabetes, given the large genetic component of DMII...

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Fen van Rhijn, MD @fvrhijn.bsky.social · 02/11/2025

It works in COPD or heart failure where people are physically impaired but don't have PEM. Though I suspect that these patients will also have an opinion about how well it captures their disability...

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

Uh, oke, bedankt voor het compliment.

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Fen van Rhijn, MD @fvrhijn.bsky.social · 24/10/2025

Sorry sinds 'cultuur van de dood' kan ik niet meer op GL/PVDA stemmen.

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Reposted by Fen van Rhijn, MD

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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Reposted by Fen van Rhijn, MD

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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Reposted by Fen van Rhijn, MD

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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Fen van Rhijn, MD @fvrhijn.bsky.social · 23/08/2025

Ooh good to know that you're doing this! Any estimates on when it will be done? (It would be very useful for guideline development)

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Fen van Rhijn, MD @fvrhijn.bsky.social · 17/08/2025

Thank you for publishing that data, it's super useful to inform guidelines. I was wondering, did the person with the year long baseline recover eventually or are they still at a lower baseline?

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Reposted by Fen van Rhijn, MD

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

🫂 Thanks for all you do! We're in this together. (Unfortunately 😭. While they sit there, paid, in their committees, we have to write the rebuttals from our beds...)

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

I keep shouting into the void, hoping someone listens...

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

I'm not looking forward to the meetings where I have to show that it is scientifically and clinically valid to disagree with the American Heart Association and the Mount Sinai Cohen center.

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

And yeah I know how these things go. 9 people want a GET recommendation, 1 person doesn't, the result is something that looks like this. It is awful, and people will die as a result. Exercise is not a cure for IACC.

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

This really upsets me bc I'm spending my time trying to help very severely ill people, all of whom without exception have tried pacing and graded exercise. We need a real cure. We need doctors who listen. We need abled doctors to step up.

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

Maybe we can say, current screening is imperfect, and develop better screening questionnaires. Instead of blaming us that apparently we still overdid it because we are not improving.

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

I agree that exercise intolerance is not PEM. This is a very important distinction and current screening for PEM cannot fully differentiate between PEM and exercise intolerance. But instead of subjecting Everyone to an exercise regimen, something most of us have already done

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

If any drug had the adverse effects that GET has, it would have been banned. Instead, it continues to be dragged back into treatment recommendations where it has NO PLACE.

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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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Fen van Rhijn, MD @fvrhijn.bsky.social · 12/08/2025

I take levocetirizine 10mg 4 times a day, famotidine 40mg 2 a day, nalcrom 200mg 3-4 a day.

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Fen van Rhijn, MD @fvrhijn.bsky.social · 12/08/2025

Yes, I started mestinon in 2024. Helped a lot with OI, cognitive function and light tolerance. Ldn was more complicated. Had to stop restart it. Took 6 months before I noticed an effect. And I think I only tolerate it now bc my MCAS is treated. Ldn 2.75 mg once daily , mestinon 40mg 5 times/day

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Fen van Rhijn, MD @fvrhijn.bsky.social · 12/08/2025

Mestinon is the brand name for pyridostigmine

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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 · 08/08/2025

Interessant! Nee niet dat ik weet (maar dat zegt niet perse super veel). Dacht wel dat er mensen bezig waren met AGE en covid.

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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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Fen van Rhijn, MD @fvrhijn.bsky.social · 05/08/2025

Oh yeah, definitely underpowered but still something to keep in mind (as pw infections were excluded from the analysis)

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