Fen van Rhijn, MD
@fvrhijn.bsky.social
MD | rheumatology resident
#ME due to #LongCovid
Nonbinary 🌈🌈🌈🌈 | views are mine.
#ME due to #LongCovid
Nonbinary 🌈🌈🌈🌈 | views are mine.
Authors do not think this is very serious. While the symptoms of intravascular admin they describe are indicative of CNS toxicity.
December 6, 2025 at 2:33 PM
Authors do not think this is very serious. While the symptoms of intravascular admin they describe are indicative of CNS toxicity.
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.
33% accidentally injected intravascularly, which is dangerous. Authors say this decreased by 83% (of what) but it's still a major risk.
December 6, 2025 at 2:33 PM
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.
33% accidentally injected intravascularly, which is dangerous. Authors say this decreased by 83% (of what) but it's still a major risk.
Reasons for stopping. 14 stopped due to non effect. Another 14 due to adverse events.
December 6, 2025 at 2:33 PM
Reasons for stopping. 14 stopped due to non effect. Another 14 due to adverse events.
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...)
Important: 37 people had not reached 36 weeks yet (but they mention n= 103 in all graphs...)
December 6, 2025 at 2:33 PM
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...)
Important: 37 people had not reached 36 weeks yet (but they mention n= 103 in all graphs...)
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.
December 6, 2025 at 2:33 PM
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.
This is doing the rounds in NL. Here's some food for thought. 🧵
December 6, 2025 at 2:23 PM
This is doing the rounds in NL. Here's some food for thought. 🧵
Yes but the lack of evidence! Ok please look at the meta analysis that supports glp-1 agonists and sglt2-i for high risk dm2 and look at who sponsored it and whether you think -this- consists of evidence. High heterogeneity and few trials directly comparing them to cheaper meds.
July 22, 2025 at 10:37 AM
Yes but the lack of evidence! Ok please look at the meta analysis that supports glp-1 agonists and sglt2-i for high risk dm2 and look at who sponsored it and whether you think -this- consists of evidence. High heterogeneity and few trials directly comparing them to cheaper meds.
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
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.
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!
April 27, 2025 at 11:23 AM
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!
Three years ago I received this email. I didn't know that my life would change forever. Instead of almost having finished specialty training, three years later I'm stuck home horizontally on the couch and got fired from my dream job.
This can happen to anybody, so please mask up!
This can happen to anybody, so please mask up!
March 25, 2025 at 10:21 PM
Three years ago I received this email. I didn't know that my life would change forever. Instead of almost having finished specialty training, three years later I'm stuck home horizontally on the couch and got fired from my dream job.
This can happen to anybody, so please mask up!
This can happen to anybody, so please mask up!
Anyone going to the Dutch long covid day tomorrow? Come visit poster 6 and 7 if you want to know what several mostly horizontal researchers with LC have been up to. We reviewed outcomes used in LC trials, and we translated the FUNCAP55.
March 20, 2025 at 1:35 PM
Anyone going to the Dutch long covid day tomorrow? Come visit poster 6 and 7 if you want to know what several mostly horizontal researchers with LC have been up to. We reviewed outcomes used in LC trials, and we translated the FUNCAP55.
1087 dagen ziek. Vele onderzoeken tonen aan dat ik niet meer hoef te hopen op spontane genezing. En nu dan?
#NietHersteld #5JaarLongCovid #5YearsLongCovid #HalfADecadeOfNeglect #LongCovidAwarenessDay2025
#NietHersteld #5JaarLongCovid #5YearsLongCovid #HalfADecadeOfNeglect #LongCovidAwarenessDay2025
March 15, 2025 at 1:22 PM
1087 dagen ziek. Vele onderzoeken tonen aan dat ik niet meer hoef te hopen op spontane genezing. En nu dan?
#NietHersteld #5JaarLongCovid #5YearsLongCovid #HalfADecadeOfNeglect #LongCovidAwarenessDay2025
#NietHersteld #5JaarLongCovid #5YearsLongCovid #HalfADecadeOfNeglect #LongCovidAwarenessDay2025
The pandemic never ended and many of us are still dealing with the aftermath of SARS-CoV-2. Still, I'd like to take a moment to reflect on 5 years ago, when the world changed forever.
February 27, 2025 at 3:45 PM
The pandemic never ended and many of us are still dealing with the aftermath of SARS-CoV-2. Still, I'd like to take a moment to reflect on 5 years ago, when the world changed forever.
Kunnen we aub ophouden met fatshamen? Er zijn meer oorzaken van nonalcoholic fatty liver disease dan alleen overgewicht. En er zijn bergen bewijs dat SARS-CoV-2 je vetstofwisseling verkloot en ook leverschade kan induceren.
February 19, 2025 at 12:20 AM
Kunnen we aub ophouden met fatshamen? Er zijn meer oorzaken van nonalcoholic fatty liver disease dan alleen overgewicht. En er zijn bergen bewijs dat SARS-CoV-2 je vetstofwisseling verkloot en ook leverschade kan induceren.
They don't have all the answers. Eg POC voices are missing.
Stop thinking you already know what pwlc need. Who are missing and what does it mean for my work.
Be aware of who you can/cannot represent. Also talk to the ppl you don't normally see. Don't stop after 1 person.
Keep listening.
Stop thinking you already know what pwlc need. Who are missing and what does it mean for my work.
Be aware of who you can/cannot represent. Also talk to the ppl you don't normally see. Don't stop after 1 person.
Keep listening.
February 3, 2025 at 2:03 PM
They don't have all the answers. Eg POC voices are missing.
Stop thinking you already know what pwlc need. Who are missing and what does it mean for my work.
Be aware of who you can/cannot represent. Also talk to the ppl you don't normally see. Don't stop after 1 person.
Keep listening.
Stop thinking you already know what pwlc need. Who are missing and what does it mean for my work.
Be aware of who you can/cannot represent. Also talk to the ppl you don't normally see. Don't stop after 1 person.
Keep listening.
Gap between the world of patients and the able bodied. We are too sick to bridge the gap on our own. We need ppl from the other world to do go their part.
February 3, 2025 at 2:00 PM
Gap between the world of patients and the able bodied. We are too sick to bridge the gap on our own. We need ppl from the other world to do go their part.
Be aware of what it means for a pt to join in a campaign. Sending a photo might not seem vcomplicated but it's a lot of work for severe pts and can cause PEM.
Is what we ask of the community worth it if we consider the impact?
Is what we ask of the community worth it if we consider the impact?
February 3, 2025 at 1:59 PM
Be aware of what it means for a pt to join in a campaign. Sending a photo might not seem vcomplicated but it's a lot of work for severe pts and can cause PEM.
Is what we ask of the community worth it if we consider the impact?
Is what we ask of the community worth it if we consider the impact?
Then a cool video by @niethersteld.bsky.social . Three groups that are often forgotten: severe people, other IACC, children with an IACC.
We have been benefitting from all the knowledge IACC and ME pts have gathered before us. Why are they not included?
We have been benefitting from all the knowledge IACC and ME pts have gathered before us. Why are they not included?
February 3, 2025 at 1:58 PM
Then a cool video by @niethersteld.bsky.social . Three groups that are often forgotten: severe people, other IACC, children with an IACC.
We have been benefitting from all the knowledge IACC and ME pts have gathered before us. Why are they not included?
We have been benefitting from all the knowledge IACC and ME pts have gathered before us. Why are they not included?
Hardly any disabled people in academia. Excluded.
Recognize that we should do the work to include and accommodate people
Recognize that we should do the work to include and accommodate people
February 3, 2025 at 1:56 PM
Hardly any disabled people in academia. Excluded.
Recognize that we should do the work to include and accommodate people
Recognize that we should do the work to include and accommodate people
ME : People are called militant. Rhetorical hyperbole from one side, picked up by the press. History seems to be repeating for lc, despite more funding etc.
February 3, 2025 at 1:56 PM
ME : People are called militant. Rhetorical hyperbole from one side, picked up by the press. History seems to be repeating for lc, despite more funding etc.
Hermeneutical injustice - making sense of your experience -- a gap in accessing resources.
That you can become annoyed /frustrated due to gaslighting, you can be disenfranchised (seen as not rational,look this shows there's no place for you at the table)
That you can become annoyed /frustrated due to gaslighting, you can be disenfranchised (seen as not rational,look this shows there's no place for you at the table)
February 3, 2025 at 1:55 PM
Hermeneutical injustice - making sense of your experience -- a gap in accessing resources.
That you can become annoyed /frustrated due to gaslighting, you can be disenfranchised (seen as not rational,look this shows there's no place for you at the table)
That you can become annoyed /frustrated due to gaslighting, you can be disenfranchised (seen as not rational,look this shows there's no place for you at the table)
Testimonial injustice
Implicit judgement due to stereotypes.
This also happens in healthcare.
Implicit judgement due to stereotypes.
This also happens in healthcare.
February 3, 2025 at 1:54 PM
Testimonial injustice
Implicit judgement due to stereotypes.
This also happens in healthcare.
Implicit judgement due to stereotypes.
This also happens in healthcare.
Epistemology is about knowledge. Knowledge is entwined with ethics. Knowledge is a valued good.
Injustices can arise from inequalities. Literal medical harm can occur if knowledge is not advancing in the right direction.
Injustices can arise from inequalities. Literal medical harm can occur if knowledge is not advancing in the right direction.
February 3, 2025 at 1:53 PM
Epistemology is about knowledge. Knowledge is entwined with ethics. Knowledge is a valued good.
Injustices can arise from inequalities. Literal medical harm can occur if knowledge is not advancing in the right direction.
Injustices can arise from inequalities. Literal medical harm can occur if knowledge is not advancing in the right direction.
Session 3: Dr Charlotte Blease on epistemic injustice.
February 3, 2025 at 1:52 PM
Session 3: Dr Charlotte Blease on epistemic injustice.
Here's a thread of my coverage of the post viral ethics workshop hosted and organized by @vmatthiesboon.bsky.social at the Radboud.
February 3, 2025 at 12:18 PM
Here's a thread of my coverage of the post viral ethics workshop hosted and organized by @vmatthiesboon.bsky.social at the Radboud.