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Fen, MD Profile picture
Fen, MD
@FvRhijn
💉*5 | MD w/ #ME due to #LongCovid | ex rheumatology resident | regenerative med | vascular inflammation | scleroderma | harpist | they/them 🌈 views are mine
Jun 28 • 12 tweets • 3 min read
Toen ik het voor het eerst las, dacht ik: eureka. Toen ik het beter ging lezen, dacht ik: shit. Dit is een totaal zinloze maatregel, en bovendien, wat is er met onze data gebeurd?🧵 Het begint al bij 'herstelzorg'. Dat zegt al wat over het programma - beetje trainen, beetje oefenen en gewoon lekker herstellen. Bij mensen met andere ziekten is niet de verwachting dat ze herstellen van de paramedische hulp, maar dat het hun helpt bij het functioneren.
Jun 20 • 14 tweets • 4 min read
This is exactly why I keep fighting for better patient reported outcome measures (proms). A negative trial is a disaster for the field and many proms are set up for failure from the start. How come we keep using the same rusty tools? We needed to develop better ones yesterday! 🧵 I'm so wired from looking at proms that I'll shout something in the abyss. Ok, here goes. First, consider what we want to measure & how to measure it. In other fields there are sets of core outcome measures but the one for lc failed to get consensus.
sciencedirect.com/science/articl…
Apr 27 • 7 tweets • 2 min read
You know, we tried. We tried gentle exercise in bouts of 30 s and resting after. And yet, people keep telling us about how exercise is beneficial. Will you ever just listen to patients? Find a cure for PEM and the secondary deconditioning isn't an issue anymore. 🧵 It's just so super patronizing. I learned to run by increments of 30s. I know how to train and what DOMS feels like. PEM is a totally different story. And once again, for those in the back, the decline in function was sudden and not gradual!
Jan 4 • 6 tweets • 2 min read
The most important lesson from Appelman et al is not that everyone with PEM should get a two day CPET with muscle biopsies, but that we should listen to patients. 🧵 Image ME patients have been telling their drs for years about how exercise makes them ill. Usually this is a reason to be referred to psychology because your relationship to your body needs to be restored. This therapy resulted in people becoming bedbound.
Jan 4 • 13 tweets • 4 min read
De les die we van Appelman et al. moeten leren is niet dat iedereen met postexertionele malaise nu een tweedaagse fietstest met spierbiopten moet krijgen, maar dat je je patiënt moet geloven. 🧵 Image Allereerst: het onderzoek van Appelman en co is echt prachtig. De spierpijn die mensen met LC na inspanning hebben is niet gewoon een beetje spierpijn, maar spier die doodgaat doordat er van alles misgaat in de spier.

Dec 8, 2023 • 11 tweets • 3 min read
Now Brent Appelman on the pathogenesis of long covid. Image They published a case report in a pt with acute covid. Image
Dec 8, 2023 • 9 tweets • 5 min read
Good morning! Roger Paredes kicks off with a brief overview of what we already know about LC. It's all info we know but which would be revolutionary in the Netherlands, look at that first slide. Image Long Covid is not going away and the sequelae are very serious.
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Nov 25, 2023 • 18 tweets • 6 min read
This talk by @neurostingl needs to be broadcast on national media on repeat. It went super fast so am now working from my notes. Super practical and pragmatic advice on how to prescribe the most common offlabel options for long covid.

#LongCovidKongress #LCK2023 Image Dr stingl Vienna (neurologist who treats ME/CFS)
Happy to share his slides (we can email the organization)

Context: is very important when talking about off label prescribing. LC is very heterogenous. His pts have often had full workups. Image
Jan 21, 2023 • 6 tweets • 2 min read
Nog n keer in de herhaling (zodat het draadje nu wel werkt)

Ongenuanceerde advies - want de meeste mensen gaan eerder te lang door dan dat ze het niet hard genoeg proberen.

Stop met fysiotherapie voor long covid als je klachten er erger van worden. Stop. rust. pace. In grote paarse letters. Kleinere letters: Heb je fysiotherapie voor long covid? Stop meteen als je klachten verergeren. Tekeningetje van iemand die compleet doodgaat op de fiets, hartslag 160. Ernaast staat de fysiotherapeut die suggereert on wat rustiger te ademen. (wat niet gaat helpen als je lijf zo kapot is.) Twijfel je? Kijk eens naar dit lijstje.