Sebastiaan Deetman
@lymecfs.bsky.social
Down with chronic Lyme disease, ME/CFS and POTS. Researcher in Environmental Sciences, Industrial Ecologist, Born at 348 ppm.
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!
December 31, 2025 at 10:25 AM
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!
@crunchme.bsky.social would you be able to repost this important visual here on Bluesky? Thanks!
December 30, 2025 at 7:46 PM
@crunchme.bsky.social would you be able to repost this important visual here on Bluesky? Thanks!
Yup, the self blame I recognize. Another turd in the shitshow. (Shame to insult to injury? 🤔) But kudos, sounds like you found some distance to see how little choice we often have on our symptoms & how we feel. The agency is in our secondary response. Anyway, thanks for the YT tip. Brilliant vids!
December 19, 2025 at 1:14 PM
Yup, the self blame I recognize. Another turd in the shitshow. (Shame to insult to injury? 🤔) But kudos, sounds like you found some distance to see how little choice we often have on our symptoms & how we feel. The agency is in our secondary response. Anyway, thanks for the YT tip. Brilliant vids!
This! Sorry to hear, yet thanks for sharing, because this is so recognizable! Often in the blink of an eye, like pouring water on a gremlin. Instantly not yourself anymore. Indeed, pretty sure it's an inflammatory symptom. Hope you get back to baseline soon. And get well soon thereafter! 🍀
December 18, 2025 at 12:10 PM
This! Sorry to hear, yet thanks for sharing, because this is so recognizable! Often in the blink of an eye, like pouring water on a gremlin. Instantly not yourself anymore. Indeed, pretty sure it's an inflammatory symptom. Hope you get back to baseline soon. And get well soon thereafter! 🍀
Reposted by Sebastiaan Deetman
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.
December 2, 2025 at 1:30 PM
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.
Bedankt dat jullie er waren 🙏
November 30, 2025 at 6:10 PM
Bedankt dat jullie er waren 🙏
Reposted by Sebastiaan Deetman
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.
Vandaag kregen de mensen die in stilte lijden een stem. Nu is het aan de politiek om daar naar te luisteren.
November 30, 2025 at 4:14 PM
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.
Vandaag kregen de mensen die in stilte lijden een stem. Nu is het aan de politiek om daar naar te luisteren.
Dit is zo ontzettend belangrijk! Vóór ik ziek werd kwam ik daar op 't #Malieveld regelmatig over de finish van hardloopevenementen. Nu zou ik er geen 5 minuten rechtop kunnen staan. #Lyme #LongCovid #MECFS en #Pais nemen je zoveel af. Bedankt dat jullie er waren voor iedereen die #niethersteld is 💙
November 30, 2025 at 5:48 PM
Dit is zo ontzettend belangrijk! Vóór ik ziek werd kwam ik daar op 't #Malieveld regelmatig over de finish van hardloopevenementen. Nu zou ik er geen 5 minuten rechtop kunnen staan. #Lyme #LongCovid #MECFS en #Pais nemen je zoveel af. Bedankt dat jullie er waren voor iedereen die #niethersteld is 💙
Yes almost immediate and short-term, lasting an hour or so. Indeed comparable to green tea, both a subtle boost & a calm. Probably by regulating cortisol & consequently adrenaline, but the details are beyond me. I used caps for a few months, but didn't notice any fundamental effect on symptoms.
November 8, 2025 at 6:49 PM
Yes almost immediate and short-term, lasting an hour or so. Indeed comparable to green tea, both a subtle boost & a calm. Probably by regulating cortisol & consequently adrenaline, but the details are beyond me. I used caps for a few months, but didn't notice any fundamental effect on symptoms.
Ginseng was suggested in a treatment protocol by Manuel Ruiz-Pablos. Similar to coffee, I feel temporarily better on it, but I'm cautious. From what I remember it supposedly surpresses immune response, so one may have to take it with anti-virals. Here's a link: pmc.ncbi.nlm.nih.gov/articles/PMC...
Hypocortisolemic ASIA: a vaccine- and chronic infection-induced syndrome behind the origin of long COVID and myalgic encephalomyelitis
Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), long COVID (LC) and post-COVID-19 vaccine syndrome show similarities in their pathophysiology and clinical manifestations. These disorders are related to viral or adjuvant persistence, ...
pmc.ncbi.nlm.nih.gov
November 8, 2025 at 2:32 PM
Ginseng was suggested in a treatment protocol by Manuel Ruiz-Pablos. Similar to coffee, I feel temporarily better on it, but I'm cautious. From what I remember it supposedly surpresses immune response, so one may have to take it with anti-virals. Here's a link: pmc.ncbi.nlm.nih.gov/articles/PMC...
Very sorry to hear, it's raw. This recent publication may not be directly practically useful, but I definitely found it relatable. It's both scientifically reflective and deeply personal, so I hope you find it helpful 🍀: link.springer.com/article/10.1...
Experiences and challenges of staying employed with chronic fatigue syndrome - Discover Public Health
Background Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating condition that affects individuals’ ability to engage in sustained employment. In India, limited research has e...
link.springer.com
November 8, 2025 at 2:10 PM
Very sorry to hear, it's raw. This recent publication may not be directly practically useful, but I definitely found it relatable. It's both scientifically reflective and deeply personal, so I hope you find it helpful 🍀: link.springer.com/article/10.1...
Exactly! Which makes the real climate shift way scarier. Like shown by the data from svs.gsfc.nasa.gov/5452/
November 7, 2025 at 8:38 AM
Exactly! Which makes the real climate shift way scarier. Like shown by the data from svs.gsfc.nasa.gov/5452/
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 🙏
🌟Triple Giving November is back! From November 1 to December 2, all gifts to OMF will be tripled, up to $500,000, thanks to generous matching donors.
👉 Triple your gift today and learn about other ways to support OMF: ow.ly/6RrM50XlkLk.
#pwME #MECFS #pwLC #LongCOVID
👉 Triple your gift today and learn about other ways to support OMF: ow.ly/6RrM50XlkLk.
#pwME #MECFS #pwLC #LongCOVID
November 2, 2025 at 2:06 PM
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 🙏
Thank you 🙏 This spoke to me as an ME patient, as an environmental researcher and as a Buddhist. This is the practice, indeed.
October 30, 2025 at 9:09 PM
Thank you 🙏 This spoke to me as an ME patient, as an environmental researcher and as a Buddhist. This is the practice, indeed.
Thanks so much for sharing this! I hadn't connected the dots yet, but been in "impending doom" mode for 10+ years; it sucks! No clue it was an MCAS thing, but it makes sense. Antihistamines hit me hard though, like total body shutdown, but even that makes sense after sounding the alarm for years. 💙
July 31, 2025 at 8:40 AM
Thanks so much for sharing this! I hadn't connected the dots yet, but been in "impending doom" mode for 10+ years; it sucks! No clue it was an MCAS thing, but it makes sense. Antihistamines hit me hard though, like total body shutdown, but even that makes sense after sounding the alarm for years. 💙
Reposted by Sebastiaan Deetman
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...
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...
www.nature.com
July 6, 2025 at 8:06 AM
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...
That's a long & relatable list. Sorry to hear. I've felt notable benefits from: Selenium, Glutathione, Molybdenum, B2. But I would recommend a DNA test & download the raw data to analyze it through geneticlifehacks.com Using genetics to find individual do's and don'ts saves 💰, time & frustration. 🍀
geneticligehacks.com
July 6, 2025 at 7:33 AM
That's a long & relatable list. Sorry to hear. I've felt notable benefits from: Selenium, Glutathione, Molybdenum, B2. But I would recommend a DNA test & download the raw data to analyze it through geneticlifehacks.com Using genetics to find individual do's and don'ts saves 💰, time & frustration. 🍀
Insightful resource! Good to keep in mind, that the peak of that curve is shifting in two ways: 1) towards higher temperatures (as shown), but also 2) the frequency of 'average days' goes down and is redistributed towards the more extreme ends 🥵 Video via svs.gsfc.nasa.gov/5452/
July 4, 2025 at 7:11 AM
Insightful resource! Good to keep in mind, that the peak of that curve is shifting in two ways: 1) towards higher temperatures (as shown), but also 2) the frequency of 'average days' goes down and is redistributed towards the more extreme ends 🥵 Video via svs.gsfc.nasa.gov/5452/
I use Chronic Lyme, except when speaking to doctors, then any Post [...] acronyms seems to work better. And I use 'crash', but really it's probably mostly PEM.
June 28, 2025 at 12:32 PM
I use Chronic Lyme, except when speaking to doctors, then any Post [...] acronyms seems to work better. And I use 'crash', but really it's probably mostly PEM.
And here's a link to the study: doi.org/10.1038/s443...
Replicated blood-based biomarkers for myalgic encephalomyelitis not explicable by inactivity | EMBO Molecular Medicine
imageimageThere are no cellular or molecular biomarkers diagnostic of myalgic encephalomyelitis (also known as chronic fatigue syndrome [ME/CFS]). We find hundreds of blood-based traits are different, as a population average, between ME/CFS cases ...
doi.org
June 20, 2025 at 11:13 AM
And here's a link to the study: doi.org/10.1038/s443...
Reposted by Sebastiaan Deetman
📣 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/2025/06/17/l...
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.
thesicktimes.org
June 17, 2025 at 4:04 PM
📣 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/2025/06/17/l...
Very clear explanation of an important new study. It even references the partial, but likely, role of IMO sulfur emission regulations for ships in the scorching hot summer in the Northern Hemisphere in 2023. @leonsimons.bsky.social
June 5, 2025 at 10:39 AM
Very clear explanation of an important new study. It even references the partial, but likely, role of IMO sulfur emission regulations for ships in the scorching hot summer in the Northern Hemisphere in 2023. @leonsimons.bsky.social
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.
June 4, 2025 at 4:10 PM
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.
No, me neither, but just saw a great @putrinolab.bsky.social intro at the intl. #MEcfs conference '25 (today) mention this study pubmed.ncbi.nlm.nih.gov/38496502/ which suggest low cortisol is one of the few shared markers between sexes in LC. Still not sure about trying Vitex, hormones are complex!
Sex differences in symptomatology and immune profiles of Long COVID - PubMed
Strong sex differences in the frequencies and manifestations of Long COVID (LC) have been reported with females significantly more likely than males to present with LC after acute SARS-CoV-2 infection...
pubmed.ncbi.nlm.nih.gov
May 12, 2025 at 10:06 AM
No, me neither, but just saw a great @putrinolab.bsky.social intro at the intl. #MEcfs conference '25 (today) mention this study pubmed.ncbi.nlm.nih.gov/38496502/ which suggest low cortisol is one of the few shared markers between sexes in LC. Still not sure about trying Vitex, hormones are complex!