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Fen van Rhijn, MD

@fvrhijn.bsky.social

MD | rheumatology resident #ME due to #LongCovid Nonbinary 🌈🌈🌈🌈 | views are mine.

2,460 Followers  |  404 Following  |  363 Posts  |  Joined: 21.08.2023  |  1.8605

Latest posts by fvrhijn.bsky.social on Bluesky

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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

22.09.2025 08:22 β€” πŸ‘ 987    πŸ” 393    πŸ’¬ 40    πŸ“Œ 50

One Covid infection = Long Covid
4.5 years of β€œexhibiting abnormally low activation in the parietal lobe”

βœ… problems with coordination, movement, and balance
βœ… poor hand-eye coordination and spacial awareness
βœ… inability to find the names of objects
βœ… difficulty with multitasking

#disabled

15.09.2025 12:33 β€” πŸ‘ 13    πŸ” 7    πŸ’¬ 1    πŸ“Œ 0

Would love to see RECOVER-TLC & RECOVER prioritize these findings.

➑️ Oxygen extraction issues

➑️ Preload failure

➑️ Reduced VΜ‡O2peak

➑️ Skeletal muscle O2 diffusion

03.09.2025 00:30 β€” πŸ‘ 21    πŸ” 6    πŸ’¬ 1    πŸ“Œ 0

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)

23.08.2025 19:58 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

Wat klote! πŸ«‚

23.08.2025 19:51 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

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?

17.08.2025 07:58 β€” πŸ‘ 4    πŸ” 1    πŸ’¬ 0    πŸ“Œ 0

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

16.08.2025 09:57 β€” πŸ‘ 59    πŸ” 11    πŸ’¬ 2    πŸ“Œ 1

πŸ«‚

16.08.2025 12:03 β€” πŸ‘ 0    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

πŸ«‚ 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...)

14.08.2025 22:27 β€” πŸ‘ 10    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

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

14.08.2025 20:52 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

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.

14.08.2025 20:22 β€” πŸ‘ 20    πŸ” 0    πŸ’¬ 3    πŸ“Œ 0

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.

14.08.2025 20:22 β€” πŸ‘ 16    πŸ” 1    πŸ’¬ 1    πŸ“Œ 0

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.

14.08.2025 20:22 β€” πŸ‘ 27    πŸ” 5    πŸ’¬ 1    πŸ“Œ 0

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.

14.08.2025 20:22 β€” πŸ‘ 20    πŸ” 1    πŸ’¬ 1    πŸ“Œ 0

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

14.08.2025 20:22 β€” πŸ‘ 20    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

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.

14.08.2025 20:22 β€” πŸ‘ 29    πŸ” 7    πŸ’¬ 1    πŸ“Œ 1

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.

14.08.2025 20:20 β€” πŸ‘ 66    πŸ” 17    πŸ’¬ 2    πŸ“Œ 1

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

12.08.2025 17:01 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

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

12.08.2025 09:25 β€” πŸ‘ 4    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

Mestinon is the brand name for pyridostigmine

12.08.2025 09:23 β€” πŸ‘ 3    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
Preview
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...

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...

11.08.2025 06:45 β€” πŸ‘ 31    πŸ” 15    πŸ’¬ 1    πŸ“Œ 3
Preview
How Eugenics Shaped Statistics Exposing the damned lies of three science pioneers.

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

09.08.2025 15:02 β€” πŸ‘ 154    πŸ” 51    πŸ’¬ 8    πŸ“Œ 6

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

08.08.2025 08:39 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0
Preview
Acetyl-CoA subcellular compartmentalization regulates T cell adaptation Upon activation, naΓ―ve T cells undergo rapid proliferation and differentiation, giving rise to clonally expanded populations specifically tailored for…

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...

06.08.2025 16:33 β€” πŸ‘ 4    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

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

05.08.2025 19:26 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

I found it very curious that quite a big number of people had infections during the SGB trials. Given the link between the ANS and the immune system it wouldn't surprise me if it were causal (and then we're in for a nasty surprise te: reactivations etc etc...)

05.08.2025 18:49 β€” πŸ‘ 1    πŸ” 0    πŸ’¬ 1    πŸ“Œ 0

β€œBoomers 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…”

30.07.2025 08:04 β€” πŸ‘ 25    πŸ” 8    πŸ’¬ 1    πŸ“Œ 0

Yay finally the colleagues seem to be waking up!

29.07.2025 19:27 β€” πŸ‘ 15    πŸ” 1    πŸ’¬ 1    πŸ“Œ 0

Er heeft iemand heel interessant onderzoek gedaan naar hoe ouders wiens kinderen non contact gingen communiceren op fora voor zulke ouders. Voor t geval je een Rabbit Hole in wil duiken. Tl;dr dat ze zulke foto's posten met lange huilverhalen erbij zegt vaak al genoeg.

issendai.com/psychology/e...

26.07.2025 08:42 β€” πŸ‘ 2    πŸ” 0    πŸ’¬ 0    πŸ“Œ 0

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

22.07.2025 19:55 β€” πŸ‘ 5    πŸ” 23    πŸ’¬ 4    πŸ“Œ 2

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