Sebastiaan Deetman
@lymecfs.bsky.social
Down with chronic Lyme disease, ME/CFS and POTS. Researcher in Environmental Sciences, Industrial Ecologist, Born at 348 ppm.
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.
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.
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 🙏
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...
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...
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.
Reposted by Sebastiaan Deetman
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)
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)
May 9, 2025 at 1:22 AM
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)
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)
Reposted by Sebastiaan Deetman
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/
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/
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...
www.medrxiv.org
April 12, 2025 at 12:57 PM
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/
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/
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. 📖
March 29, 2025 at 7:03 PM
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. 📖
Reposted by Sebastiaan Deetman
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...
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.
www.statnews.com
March 19, 2025 at 5:44 PM
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...