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Sebastiaan Deetman

@lymecfs.bsky.social
221 followers 361 following 74 posts

Down with chronic Lyme disease, Long Covid, ME/CFS and POTS. Researcher in Environmental Sciences, Industrial Ecologist, Born at 348 ppm. patientledhypothesis.github.io

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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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Reposted by Sebastiaan Deetman
Anil van der Zee @anilvanderzee.bsky.social · 21/08/2026
"Not a Patient Advocate. Not Your Silver Lining Porn. Just Desperation." anilvanderzee.com/not-an-advoc... #pwme #myalgicE #millionsmissing #severeME
anilvanderzee.com
Not an Advocate. Not Your Silver Lining Porn. Just Desperation. - Anil van der Zee
I'm not a patient advocate. I'm not an activist. I'm just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopeful...
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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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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 bottlesCrunchME 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 · 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 · 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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Adam @abrokenbattery.bsky.social · 02/12/2025
Clip from an NOS news report about the PAIS protest in The Hague. Wheelchairs symbolised those too ill to attend. Patients with post-infectious illnesses: long COVID, ME/CFS, Lyme, Q-fever and sepsis are calling for proper research and treatment.
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Reposted by Sebastiaan Deetman
Julian Bushoff @julianbushoff.bsky.social · 30/11/2025
Indrukwekkend #paisprotest vandaag voor al die mensen die #niethersteld zijn van bijvoorbeeld long covid, ME/CVS, Lyme, Q-Koorts en andere PAIS. Vandaag kregen de mensen die in stilte lijden een stem. Nu is het aan de politiek om daar naar te luisteren.
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Sebastiaan Deetman @lymecfs.bsky.social · 02/11/2025
If you can, please consider donating to the Open Medicine Foundation this November. Your donation will be trippled 3️⃣✖️! OMF supports some of the most promising research to better understand and treat #MECFS & #LongCovid, which are making the lives of millions of patients deeply miserable. Thank you 🙏
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Reposted by Sebastiaan Deetman
John Fellowes @jrf66.bsky.social · 06/07/2025
Reassuring self-delusion: "participants in all wealth quintiles rated their personal carbon footprint far better than their perception of the carbon footprint of others would suggest. This was particularly striking among participants in the top 20% wealth group." www.nature.com/articles/s41...
nature.com
The carbon perception gap in actual and ideal carbon footprints across wealth groups
Nature Communications - Survey data from Germany show that, collectively, people acknowledge carbon inequality and favor fairer emission distributions yet individually perceive themselves to...
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Reposted by Sebastiaan Deetman
Miles W. Griffis @mileswgriffis.bsky.social · 17/06/2025
📣 People with Long COVID face an increased risk of housing insecurity. Research shows this trend, which people with the disease have warned for years. Freelance reporter @jloeppky.com reports for @thesicktimes.bsky.social. thesicktimes.org/2025/06/17/l...
thesicktimes.org
Long COVID is increasing housing insecurity, but support programs fail to help - The Sick Times
A growing body of research shows that Long COVID, combined with a lack of government support, leads to financial insecurity and housing instability.
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Sebastiaan Deetman @lymecfs.bsky.social · 04/06/2025
So, yeah... Being chronically ill isn't great, but it sure is expensive! After 10+ years of #Lyme and #MEcfs with years of #LongCovid on top, I realised I'm easily down (€) 200k in lost income and 50k in extra expenses. Could have bought a house, instead I buy supplements.
Display of many jars and bottles containing health supplements.
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Reposted by Sebastiaan Deetman
María Richardson @diatoma.bsky.social · 09/05/2025
This is my 9th year advocating for #MyalgicEncephalomyelitis #MillionsMissing #MEAwarenessMonth. My health has only worsened since then (9 years ago I was able to work FT! Now I can't even work PT and am mainly housebound), but I'm hopeful because: (1/6)
A red poster with the hashtag #MillionsMissing at the top. Below that the letters SOS spelled out with 18 selfies of a white Mexican woman lying down, often in the dark and wearing an ice hat, sometimes with a beloved orange cat. 
Below that some key facts: 
- M.E. has one of the lowest Quality if Life measurements of any disease 
- There are zero FDA approved drugs for ME 
- NIH M.E. funding is extremely low relative to disease burden 
- Even this limited funding is currently at risk 
#DisabilitySOS 
#GreatestMEdicalScandal 
#MyalgicEncephalomyelitis 
#WorldMEDay
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Reposted by Sebastiaan Deetman
Tom Kindlon @tomkindlon.bsky.social · 12/04/2025
New from Germany: Brainstem Reduction and Deformation in the 4th Ventricle Cerebellar Peduncles in Long COVID Patients: Insights into Neuroinflammatory Sequelae and “Broken Bridge Syndrome” www.medrxiv.org/content/10.1... #LongCovid #NeuroPASC 1/
medrxiv.org
Brainstem Reduction and Deformation in the 4th Ventricle Cerebellar Peduncles in Long COVID Patients: Insights into Neuroinflammatory Sequelae and “Broken Bridge Syndrome”
Post-COVID Syndrome (PCS), also known as Long COVID, is characterized by persistent and often debilitating neurological sequelae, including fatigue, cognitive dysfunction, motor deficits, and autonomi...
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Sebastiaan Deetman @lymecfs.bsky.social · 29/03/2025
Mood today. "I was still sick [...]. Feeling something like a cornered animal, I cast about in my mind for some way out of the maze, but could see none. Still my brain responded with a refusal to give in." From 'Lyme with a twist', by Lowell Miller. 📖
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Reposted by Sebastiaan Deetman
Isabella Cueto @isabellacueto.bsky.social · 19/03/2025
NEW: Cuts to Columbia University funding have shuttered a prominent research center into ME/CFS, a debilitating condition with no FDA-approved treatments. It's a gut punch to a community that for years has been frustrated by a lack of funding. Developing... www.statnews.com/2025/03/19/m...
statnews.com
ME/CFS research program shuts down at Columbia after Trump cuts
ME/CFS, which affects millions of Americans, has few dedicated research centers. Now the one at Columbia has been shut down over Trump funding cuts.
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