Fen van Rhijn, MD
fvrhijn.bsky.social
Fen van Rhijn, MD
@fvrhijn.bsky.social
MD | rheumatology resident
#ME due to #LongCovid
Nonbinary 🌈🌈🌈🌈 | views are mine.
It's 2025 and we are still using the 6 minute walking test as a primary outcome measure in long covid clinical trials. Yikes.
October 27, 2025 at 8:18 PM
Reposted by Fen van Rhijn, MD
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
September 22, 2025 at 8:22 AM
Reposted by Fen van Rhijn, MD
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
September 15, 2025 at 12:33 PM
Reposted by Fen van Rhijn, MD
Would love to see RECOVER-TLC & RECOVER prioritize these findings.

➡️ Oxygen extraction issues

➡️ Preload failure

➡️ Reduced V̇O2peak

➡️ Skeletal muscle O2 diffusion
Great to see another research team (this time in Arizona, USA) doing iCPET research:

Long COVID and chronic fatigue syndrome/myalgic encephalitis share similar pathophysiologic mechanisms of exercise limitation

physoc.onlinelibrary.wiley.com/doi/10.14814...

#MEcfs #LongCovid #PwME
September 3, 2025 at 12:30 AM
Reposted by Fen van Rhijn, MD
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
it appears that @bsky.app have suspended the account of @jessiegender because a trans person saying "I wish ill on JK Rowling" is against the rules, so let me say with my loud cis voice that I too wish ill on all perpetrators of hate speech against trans people

reinstate Jessie, this is ridiculous
August 16, 2025 at 9:57 AM
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.
August 14, 2025 at 8:20 PM
Reposted by Fen van Rhijn, MD
Prusty's new pre-print is out. Please somebody apply for MRC funding to test this in a replica study. We know from observation the mitochondria are affected. This . . . could be how. #Research #ME #PlanForME
www.medrxiv.org/content/10.1...
ME/CFS and PASC Patient-Derived Immunoglobulin Complexes Disrupt Mitochondrial Function and Alter Inflammatory Marker Secretion
Autoimmunity is a key clinical feature in both post-infectious Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and Post-Acute Sequelae of COVID (PASC). Passive transfer of immunoglobulin...
www.medrxiv.org
August 11, 2025 at 6:45 AM
Reposted by Fen van Rhijn, MD
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
How Eugenics Shaped Statistics
Exposing the damned lies of three science pioneers.
nautil.us
August 9, 2025 at 3:03 PM
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...
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…
www.sciencedirect.com
August 6, 2025 at 4:33 PM
Reposted by Fen van Rhijn, MD
“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…”
This is really excellent on our understandings of - and the reality of - intergenerational inequality.
My latest, exploring with numbers how the millennial household budget is basically incomprehensible to retired boomers.
July 30, 2025 at 8:04 AM
Yay finally the colleagues seem to be waking up!
1) Interesting letter in The Lancet Rheumatology by Brittany Adler.

"Rheumatologists are uniquely trained to manage complex, multisystem illness. Yet the field has largely remained at the margins of infection-associated chronic illness and autonomic dysfunction..."
July 29, 2025 at 7:27 PM
Reposted by Fen van Rhijn, MD
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
July 22, 2025 at 7:55 PM
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/
July 22, 2025 at 10:37 AM
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. 🧵
July 12, 2025 at 10:58 PM
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?!?
July 1, 2025 at 11:40 PM
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?
July 1, 2025 at 11:29 PM
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.
June 22, 2025 at 11:14 PM
Reposted by Fen van Rhijn, MD
#pwME do we think that infamous flawed trial might actually be shown for the bad science it is? 👀
The non-profit organization that runs Retraction Watch has launched a project aimed at rounding up flawed and fake medical-research papers and neutralizing their impact on public health.

https://go.nature.com/4jAo08S
Science-integrity project will root out bad medical papers ‘and tell everyone’
Group behind Retraction Watch aims to pinpoint the most influential flawed health data.
go.nature.com
June 4, 2025 at 1:07 AM
Reposted by Fen van Rhijn, MD
"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."
1. The US Transgender Survey has finally been released, and the results are stunning.

- <1% of people are less satisfied after HRT.
- The most common reason for detransition, pausing transition, or stopping transition is transphobia.

The latest from S. Baum.

Subscribe to support our journalism.
Largest Trans Survey Ever: Top Reason Trans People Stop Transitioning Is Transphobia
“In almost every single case, the reason was anti-trans discrimination in the form of pressure to ‘detransition’ from one’s family, friends, or community.”
www.erininthemorning.com
June 12, 2025 at 1:37 AM
Reposted by Fen van Rhijn, MD
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
New findings highlight the need for tissue biopsy studies when considering pathogen reactivation in ME/CFS.
bit.ly
June 10, 2025 at 9:42 PM
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).
June 10, 2025 at 11:01 AM
Reposted by Fen van Rhijn, MD
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...
June 4, 2025 at 7:38 PM
Reposted by Fen van Rhijn, MD
“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.
These parents clamored to enroll their children in the Covid vaccine trials. But they say it'll be tough — and unethical — to enroll children in placebo trials again. And they feel betrayed that their sacrifices are now going ignored. My latest: www.theguardian.com/us-news/2025...
A ‘war on children’: as US changes Covid vaccine rules, parents of trial volunteers push back
Frustration and anger mount as Trump administration contemplates new trials and restrictions for Covid vaccines
www.theguardian.com
June 2, 2025 at 6:07 PM
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.
June 1, 2025 at 1:21 PM
Reposted by Fen van Rhijn, MD
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.
A bit jarring to go from one article describing a new #COVID variant leading to increased hospitalizations in Asia that has now detected in US to the next article about how the US is recommending fewer people get vaccinated.
May 28, 2025 at 9:21 PM