Fen van Rhijn, MD

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...

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

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

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…

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...

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

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...)

“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…”

Yay finally the colleagues seem to be waking up!

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...

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

For those in the back: doing nothing is also a medical decision that has adverse events and long term consequences.

So, dear colleagues, before we condemn the few people who are willing to work with us and actually try things, maybe we can
1) make healthcare safe for pwIACC/ME
2) offer low risk off label treatments
3) treat very severe people too (they are often excluded from medical care)

Am I skeptical of triple anticoagulants? Sure I am. I wouldn't do it myself - there's lots of rubbish trapped in microclots and I don't want to find out what happens to me when it is released. But I totally understand people's decisions to try it. ME is a living death.

This to say that the standard of evidence that we require of IACC treatments is way higher than we require of other diseases. ME kills. Most of us die prematurely of cardiac failure. We are high risk too.

This is a graph from a meta analysis (highest form of evidence according to some). They used a statistical trick to compare trials with each other. In the pic you can see that most drugs were tested against placebo (and of course the drug will work better on blood sugar than the placebo). The new expensive drugs were hardly tested against the cheap old drugs. This makes the statistical trick less reliable. Coincidentally the meta analysis was sponsored by big pharma.

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.

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/

I had no idea this was a whole genre. Do y'all have got any favorites that belong on this list?

And there's this very cinematic piece for wind orchestra by Katherine Bergman. soundcloud.com/katherineber...

José Luis Domínguez wrote a whole piece for orchestra and choir entitled 'Gracias tibi' and it sounds amazing.
youtu.be/ATpVXvwnBy0

There's Breathe by Keziah Thomas (now part of the ABRSM syllabus for harp!). She wrote this for her volunteering gig where she played music for hcw on break. It reminds me exactly of what it felt like to doff the PPE and then gulp down some water before going back.
youtu.be/m1DRwNgQ_LM

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. 🧵

Wat mooi omschreven! Zo is dat hier ook 100%! Het is idd net ademen.

Tweede keer was voor de grap een stuk boek wat ik niet snapte er door gegooid. Chat gpt snapte het ook niet haha.

Nee haha. Heb het twee keer getest en kon er niks mee. 1x geprobeerd om het een samenvatting van wat literatuur te laten schrijven (dit was een test voor een project dat niet van mij is, mijn taak was checken op juistheid vd info). Allemaal nep referenties enz.

Omdat er in de data waar het op gebaseerd is dan waarschijnlijk vaak woorden staan die daar op lijken. Als het wetenschappelijke artikelen verzint dan zijn de nep auteurs ook altijd veel voorkomende namen

Did you see the recent AHA position statement on exercise intolerance in long covid?

If all the patients are telling you, including former athletes etc, that exercise makes them worse, it's time to listen.

De Amerikaanse Hartstichting (die voor wat betreft richtlijnen best wel leidend is) heeft net een vreselijk standpunt uitgebracht tav inspannings intolerantie bij lc. Pem totaal niet genoemd enzo. Nee we zijn allemaal gedeconditioneerd...

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?!?

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?

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.