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Sebastiaan Deetman @lymecfs.bsky.social · 23h

Well, I've added it to my waitinglist for self-experimentation 😊

Sebastiaan Deetman @lymecfs.bsky.social · 08/10/2026

Thank you! Very interesting. That seems to fit your hypothesis perfectly. Do you have any experience with Uzara? I had never heard of it, but it seems to be a more commonly known herbal remedy in Germany. Apparently the active compound, Uzarigenin, may be a strong natural GSK3-beta inhibitor.

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Sebastiaan Deetman @lymecfs.bsky.social · 29/09/2026

Great summary of disease mechanisms in #MEcfs. Both latest science & intuitive explainer. "We didn't hear much talk about endocrinology recently, by anybody". Yet 2 out of 3 buttons towards health may be endocrine related. A blind spot in #MEcfs research? It fits this: patientledhypothesis.github.io

patientledhypothesis.github.io

Patient-led Hypothesis on ME/CFS

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Reposted by Sebastiaan Deetman

George Monbiot @georgemonbiot.bsky.social · 24/09/2026

Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...

theguardian.com

Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot

Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot

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Sebastiaan Deetman @lymecfs.bsky.social · 25/09/2026

Thanks so much for sharing the details & your experience, Andrew! At that price tag I couldn't afford it long term. But I may consider a short experiment. My physician wasn't open to think along with my science-based suggestions, so it's back to self-experimentation with supplements like this.

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Sebastiaan Deetman @lymecfs.bsky.social · 25/09/2026

Hi Andrew, could I ask you about how you get oxaloacetate? Is it prescription based, is it pricey? Where do you get it? I understand the mechanistic relevance of the compound for ME, so I'm curious to experiment if that's something one could responsibly do unsupervised. Any advice is very welcome!

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Sebastiaan Deetman @lymecfs.bsky.social · 21/09/2026

Amazing 🫶 sounds like you blew each other away!

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Sebastiaan Deetman @lymecfs.bsky.social · 21/09/2026

Haha, well, great excuse for you to eat the lot then! 🥭

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Sebastiaan Deetman @lymecfs.bsky.social · 21/09/2026

Does it correlate with headaches or migraines for you? Lately, when I eat too much, it seems to be a trigger. 10 hrs afterwards or so.

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Sebastiaan Deetman @lymecfs.bsky.social · 18/09/2026

Oh, wow, seeing CLYBL show up here is very exciting! It's an enzyme that's also key to the Itaconate Shunt as hypothesized by a.o. dr. Rob Phair. m.youtube.com/watch?v=RiVD... Plus I have reason to believe the Itaconate Shunt can disregulate cortisol as suggested here: patientledhypothesis.github.io

m.youtube.com

Rob Phair, PhD, Presents on the Itaconate Shunt Hypothesis for ME/CFS

YouTube video by Open Medicine Foundation - OMF

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Sebastiaan Deetman @lymecfs.bsky.social · 22/08/2026

Found these ones for ya! Wishing you well.

Triptych of three pictures of pumpkins growing on the ground in a vegetable garden. A big spotted green pumpkin, a pair of smaller lightgreen pumpkins leaning against eachother and a big shiny orange Hokkaido pumpkin, surrounded by green twigs and leafs.

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Sebastiaan Deetman @lymecfs.bsky.social · 05/08/2026

Do you think FeNO breath-tests would have any value in assessing the role of chronic inflammation or nitric oxide issues in ME/CFS or Long Covid? Looks like they're affordable & eNOS uncoupling is implied in recent hypotheses both here patientledhypothesis.github.io and here bsky.app/profile/swal...

patientledhypothesis.github.io

Patient-led Hypothesis on ME/CFS

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Sebastiaan Deetman @lymecfs.bsky.social · 01/08/2026

Very recognizable! For me, the 🫀monitoring also seemed to suggest that standing up is even harder in the mornings so I got a kitchen chair to sit down and take breaks while making breakfast/food. And I reduce effort further by prepping my overnight oats in the evenings.

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Sebastiaan Deetman @lymecfs.bsky.social · 25/07/2026

Cortisol is more complex than blood-levels. Likely 'dysregulated' as all metabolites regulating CRH may be affected (a.o. by the itaconate shunt). In addition, MR receptor sensitivity - detailed by @stpaulsbay.bsky.social - may cause mayhem at normal cortisol levels. But yes, it's tough to prove 2/2

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Sebastiaan Deetman @lymecfs.bsky.social · 25/07/2026

Thanks for sharing your feedback & experience! It just scared me that noone mentioned the long-term risks of Gabapentin (see linked study, trigger warning) while I was on it a while. Do you have a link to the Estrogen findings? I'll make a version 2, but I'm still crashing from making this one 🪫 1/2

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Sebastiaan Deetman @lymecfs.bsky.social · 25/07/2026

Thanks so much! I didn't know about that. Looks cool and very helpful indeed. Appreciate it 🙏

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Sebastiaan Deetman @lymecfs.bsky.social · 25/07/2026

Thanks Andrew! I can't emphasize enough that I only made an overview. It builds on detailed hypotheses by other patients like @tamararivc.bsky.social, @stpaulsbay.bsky.social and Jeff Wood with the @renegaderesearch.bsky.social team. Also some of the great work by @openmedf.bsky.social is included.

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Sebastiaan Deetman @lymecfs.bsky.social · 25/07/2026

Thanks Andrew! Valuable points made so far: 1) Even peer-reviewed studies on ME are sadly of poor quality still. 2) I put cortisol & inflammation quite centrally, as I think there's evidence they fit the puzzle. But there's no proof. 3) Missing things, like insulin-signalling, it's work-in-progress

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Sebastiaan Deetman @lymecfs.bsky.social · 25/07/2026

Great vid! Glymphatic issues are part of my visual hypothesis figure too (bottom-center). It could help explain the sex bias in ME and it's a reason why I kept the suggestion for mild recumbent movement in (despite obvious reservations, it's likely not for everyone). bsky.app/profile/lyme...

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Sebastiaan Deetman @lymecfs.bsky.social · 20/07/2026

Heerlijk, dat soort avonturen! Misschien vind je dit dan wel een interessant filmpje, over die zomer en de verhouding tot huidige klimaatontwikkelingen: m.youtube.com/watch?v=w1Ae...

m.youtube.com

Sure '76 was hot, but this is something else.

YouTube video by Dr Gilbz

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Sebastiaan Deetman @lymecfs.bsky.social · 16/07/2026

Thanks! This is great. I can see a few connections. Even personal ones, as I provided muscle chunks to the Wüst study. Also, my lithium lab-values were super low. Li may be a biomarker, but it's almost never tested. I'll do some reading, but it will take a while, I'm crashing a bit after all this.

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Sebastiaan Deetman @lymecfs.bsky.social · 14/07/2026

Nice, you're way ahead of me regarding the inflammatory/immune signaling pathways! I mostly still see those as a black-box. I'd love to hear/read more about where/how you think the insulin signaling would fit in the figure. Do you have a good source to get started? Thanks again!

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Sebastiaan Deetman @lymecfs.bsky.social · 14/07/2026

Thanks so much for the super detailed response. So much to unpack! I just find it very hard to identify unambiguous supplements. Turmeric, for example, seems to inhibit COMT (via curcumine) and is high-oxalate. For people with sensitivies in those areas (like myself) it may worsen specific symptoms.

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Sebastiaan Deetman @lymecfs.bsky.social · 11/07/2026

Thanks for sharing! That's very interesting work, probably with broader significance for #MECFS too. It seems to allign neatly with patient experience as well as some patient-led hypotheses as for example summarized here: bsky.app/profile/lyme...

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Sebastiaan Deetman @lymecfs.bsky.social · 10/07/2026

The figure builds on 3 patient-led hypotheses. Big thanks to @tamararivc.bsky.social, @stpaulsbay.bsky.social & the @renegaderesearch.bsky.social team for their work 🙏 And thanks to @vickyvdtogt.bsky.social & @swalexander.bsky.social for their input. Feedback is welcome! Replies may take a while 🍀

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Sebastiaan Deetman @lymecfs.bsky.social · 10/07/2026

Frustrated with trial-and-error approaches to treating #MECFS #LongCovid #Lyme & other #PAIS illnesses, I made a visual hypothesis of likely mechanisms of dysregulation. To discuss with my physician, but I thought I'd share it here too. Here's a clickable 🖱️ version: patientledhypothesis.github.io

Visual hypothesis of dysregulated metabolic feedbacks in ME/CFS. Compiled by Sebastiaan Deetman, the figure provides a schematic overview of mechanisms that are likely involved in causing the shared symptoms of ME and other post-acute infection syndromes (PAIS), regardless of the original trigger. Hyperlinks reference both scientific literature and existing patient-led hypotheses by Tamara Carnac, Patricia Donnellan and Jeff Wood. A maze of boxes and arrows link genetic sensitivities, key causative mechanisms such as cortisol dysregulation and mitochondrial issues referred to as 'the itaconate shunt' to downstream metabolic pathways such as the adrenaline synthesis pathway, dysregulated nitric oxide synthesis as well as the kynurenine pathway. At the center of the figure the arrows combine to show how many of these identified mechanisms cause issues with the constriction and dilation of blood vessels, leading to issues with blood flow and oxygenation, which, in turn amplify the inflammatory response, highlighted in red. These central issues are connected to smaller boxes describing secondary mechanisms such as blood clots, anaerobic respiration, ion imbalances, auto-antibodies, endothelial dysfunction, reduced antiviral activity, nerve-damage and issues with myelin repair, high estrogen levels and collagen degradation to show how these can amplify feedbacks and lead to a continued symptoms such as fatigue, PEM, sleeplessness, POTS, dysautonomia, histamine issues, brainfog, pain, muscle twitches, air-hunger, anxiety and depression. While not the main focus of the figure, it shows some available off-label medications (such as LDN, Mestinon and SSRIs) next to the relevant mechanisms that they likely address. Similarly some supplements and lifestyle-related suggestions are made where relevant, such as pacing, compression garments, meditation, GABA, glutathione, zinc, HBOT, Choline & Folate rich foods. With the warning that this is a hypothesis, not medical advice.

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Sebastiaan Deetman @lymecfs.bsky.social · 01/07/2026

If you can, please join me in supporting Kate! Their story is eerily recognizable. Kate is super kind and knowledgeable. ✌️

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Reposted by Sebastiaan Deetman

Sebastiaan Deetman @lymecfs.bsky.social · 08/06/2026

Good to see this publication on HBOT for ME/CFS. Congrats to @scheibenbogen.bsky.social & team. I find the normalization of thalamus connectivity so interesting! As a Buddhist with ME/CFS I've noticed HBOT therapy improved proprioception (body awareness, governed by the thalamus) when meditating.

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Sebastiaan Deetman @lymecfs.bsky.social · 08/06/2026

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Sebastiaan Deetman @lymecfs.bsky.social · 30/05/2026

I was just thinking how to lure folks against a background of so much free content everywhere. Hence the thought of freebies maxxing 😉 But sure, the exclusivity of limited access could work for me too. I just hate subscriptions (yet A>B), so that would be C for me. Works better as a fundraiser too.

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Sebastiaan Deetman @lymecfs.bsky.social · 30/05/2026

I like the thought! As I'm largely housebound & unable to visit exhibitions. 3 bonus selling points that would convince me: 1) single-purchase, lifetime access (perhaps even to photo-files) 2) optional audio guide track included 3) 50% of proceeds goes to fund-raiser (e.g. related to the subject)

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Reposted by Sebastiaan Deetman

emily fraser 🌿🐌✨ @emilyesfraser.bsky.social · 11/05/2026

Tens of thousands of dollars of off-label meds & treatment experiments & I’m still mostly bedbound & too sick to work/socialize/do anything but exist & suffer for years on end. No research funding = no validated treatment = millions of young lives rotting away #MEAwarenessDay #GreatestMEdicalScandal

Me, a middle aged white women with dark hair, wearing a sparkly gold dress in a bathtub full of pill bottles

CrunchME chart titled “NIH research funding for ME/CFS is just 1% of what its disability burden warrants, with Long COVID also heavily underfunded at 14% of commensurate levels. The chart shows a slew of diseases organized by whether or not they’re funded at an appropriate level based on their disability burden with ME the least adequately funded of all & HIV/AIDS & Down Syndrome on the opposite end, funded at over 2000% of their disability burdens

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Sebastiaan Deetman @lymecfs.bsky.social · 07/05/2026

Me: I wish I could show everyone a picture how differently I feel since developing ME/CFS, how the permanent pain and inflammation has hijacked my body. Dr. James: Hold my beer...

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Sebastiaan Deetman @lymecfs.bsky.social · 26/04/2026

Amazing photograph! In Dutch the Barn Owl is called the Church Owl (Kerkuil) 😊

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Sebastiaan Deetman @lymecfs.bsky.social · 20/04/2026

@ukpots.bsky.social This looks very interesting. Would there be a way to access the recordings as a patient afterwards? I don't have the funds or energy to attend in real-time, but would love to go through some of the recordings at my own speed and convenience. Thank you for your consideration 👌

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Sebastiaan Deetman @lymecfs.bsky.social · 15/03/2026

Today, on #LongCovidAwarenessDay I spotted this pamphlet on a real life bulletin board, how retro! It say "Lockdown over? Not for me." as it highlights the continuing struggle of people with #LongCovid - like myself. Link is to a fundraiser for more medical research by www.stichtinglongcovid.nl

Picture of a bulletin board with a pamphlet that says "Lockdown over? Not for me.". A campaign poster by the Dutch Long Covid Foundation (stichtinglongcovid.nl) to raise awareness for Long Covid and to raise funds for medical research.

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Sebastiaan Deetman @lymecfs.bsky.social · 12/02/2026

I've wondered about this same question lately. Also because higher sodium intake is associated with higher inflammation.

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Sebastiaan Deetman @lymecfs.bsky.social · 04/02/2026

Not 100% sure, but isn't the pomegranate also a CYP3A4 inhibitor?

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Sebastiaan Deetman @lymecfs.bsky.social · 30/01/2026

Ontzettend bedankt voor je heldere en krachtige betoog in het #LongCovid & #PAIS debat gisteren 🙏 Mijn stem heb je alvast binnen.

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Sebastiaan Deetman @lymecfs.bsky.social · 28/01/2026

Beste @laurensdassen.voltnederland.org & @ineskostic.bsky.social, staan jullie morgen in debat weer op voor alle #PAIS & #LongCovid patiënten? Ik zit thuis met #Lyme & #MEcfs. Met meer geld voor onderzoek & behandeling kan ik hopelijk weer aan de slag als onderzoeker klimaat en circulaire economie 🙏

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Sebastiaan Deetman @lymecfs.bsky.social · 31/12/2025

It definitely pops! I've spent way more than a thousand words to explain this to friends over the years, but it doesn't always seem to stick. I'll just show them the picture next time, thanks for sharing!

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