
Visual Artist, Tweets from the sick bed, #ME #pwME #POTS #COVID is not over, Eng/Swe, @remissionbiome n=50 participant, poetry @diktgymnasiet
Stockholm, Sverige
Joined September 2022
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I released an ambient album today if you ever wondered what ME people do all day except being in pain or extremely bored. Sometimes we actually can make something, if we are moderate-severe like me. Took ages and lots of help. Out on all platforms today!
open.spotify.com/album/5G2qT…
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"A staggering assault on free speech."
novaramedia.com/2026/10/30/t…
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How do we know Long COVID has subgroups? Nearly every disease does, even those with far more precise diagnostics. A catch-all diagnosis for anyone sick after a virus likely has even more.
This shows a few known subgroups in well-known diseases and how they change treatment.
🤖 Made with AI
Bra 🧵 Ja, disability organizing är helt klart en grej. Konsekvenserna för att glömma en endaste liten sak på dagens lista kan få katastrofala följer. Därmed blir vi så otroligt bra på att organisera våra liv. Vi är helt klart på en next level nivå.
Lex Tegnell
Coronakommiss.: "Folkhälsomyndigheten intog, särskilt i början, en hållning präglad av krav på evidens – inte försiktighet – och hade en defensiv syn på möjligheterna att bromsa smittspridningen.[…]
Ansvaret för detta bär dess dåvarande generaldirektör."
regeringen.se/contentassets/…
I’m bored so looking at art online and ordering some books for research. Hopefully maybe less depressed when they arrive but who knows. Sometimes ordering some stuff for future days can actually brighten up the mood on that day, if if today feels shitty. #ME
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The LDN Long COVID trial failing comes down to two things for me:
1. Long COVID and ME/CFS are likely multiple diseases. Lots of diseases are post-viral. A friend of mine developed lupus after the flu. If that had been COVID, would he have Long COVID?
2. Within each disease, only some people respond to any given drug, same as every other disease.
Some rough assumptions, just to show how the maths works (hypothetical):
- Long COVID is 10 diseases
- LDN works in 1 or 2 of them
- It helps 40% of people in those, roughly what approved drugs manage elsewhere
- The trial has 160 people, 80 on the drug
That gives 8 people per disease, and only 3 to 6 responders out of 80. Too few for a trial to detect. Even if LDN's group made up a quarter of all patients, that's still only 8 responders.
Across 1 million patients, the same maths means 40,000 to 80,000 people helped by a drug that "failed".
This also makes it complicated when a drug genuinely doesn't work. The result looks the same, so you can't tell a drug that works in a subgroup from one that doesn't work at all.
BC007, efgartigimod, daratumumab, JAK inhibitors and mast cell drugs probably all work for a subgroup. Put people with viral persistence, autoimmunity, metabolic dysfunction, endothelial damage, herpesvirus reactivation and mast cell issues in one trial and any drug will fail.
We need to split patients by their dominant biology, use what they already respond to in self-trials to match treatment concepts to groups, and recruit by blood test, not symptoms.
Until then, every trial will fail and pharma won't enter Long COVID. It's why this is the only thing we work on at @amaticahealth.
Grattis. Jag har haft ”kortvecka” i snart ett decennium pga att vården inte behandlar M.E. Århundradets största vårdskandal som The Guardian kallade det. Men i Sverige pratar vi inte om sånt. Locket på! #svpol
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It's estimated that 3/4 NFL players have degenerative brain disease when they die, contracted from playing the sport. CTE creates monsters and destroys families. Who tf cares about the halftime show, America's favorite sport is death
Have to try this
mano ta de sacanagem e esse site que fizeram q eh um simulador de cdj que lê o seu pendrive nativamente e vc consegue tocar MULTIPLAYER com outras pessoas. pelo navegador !!!!!!!!!!!
b2bstudio.live/
Subgrouping is so got damn important!

























