Siebe
@siebepersists.bsky.social
Be kind
Be rational
Protect democracy
Govern AGI
Cure ME/CFS & Long Covid
Be rational
Protect democracy
Govern AGI
Cure ME/CFS & Long Covid
3. Europa versimpelt trial-vereisten naar Australisch model:
Nederland brengt dit in bij de lopende EU pharma-hervorming
Elk jaar wordt het duurder om medicijnen te ontwikkelen door extra regels. Deze trend moet gebroken worden, anders hebben we weinig aan extra onderzoek.
Nederland brengt dit in bij de lopende EU pharma-hervorming
Elk jaar wordt het duurder om medicijnen te ontwikkelen door extra regels. Deze trend moet gebroken worden, anders hebben we weinig aan extra onderzoek.
November 29, 2025 at 2:04 PM
3. Europa versimpelt trial-vereisten naar Australisch model:
Nederland brengt dit in bij de lopende EU pharma-hervorming
Elk jaar wordt het duurder om medicijnen te ontwikkelen door extra regels. Deze trend moet gebroken worden, anders hebben we weinig aan extra onderzoek.
Nederland brengt dit in bij de lopende EU pharma-hervorming
Elk jaar wordt het duurder om medicijnen te ontwikkelen door extra regels. Deze trend moet gebroken worden, anders hebben we weinig aan extra onderzoek.
1. Nederland sluit aan bij het Decennium Tegen PAIS:
€15 miljoen per jaar naar biomedisch onderzoek
Long Covid financiering dreigt te eindigen. ME/CVS krijgt slechts 2,5mln/jaar. Dit moet veel beter.
€15 miljoen per jaar naar biomedisch onderzoek
Long Covid financiering dreigt te eindigen. ME/CVS krijgt slechts 2,5mln/jaar. Dit moet veel beter.
November 29, 2025 at 2:03 PM
1. Nederland sluit aan bij het Decennium Tegen PAIS:
€15 miljoen per jaar naar biomedisch onderzoek
Long Covid financiering dreigt te eindigen. ME/CVS krijgt slechts 2,5mln/jaar. Dit moet veel beter.
€15 miljoen per jaar naar biomedisch onderzoek
Long Covid financiering dreigt te eindigen. ME/CVS krijgt slechts 2,5mln/jaar. Dit moet veel beter.
Hier zijn 3 concrete wensen die ik heb voor PAIS in Nederland:
🧵
🧵
November 29, 2025 at 2:03 PM
Hier zijn 3 concrete wensen die ik heb voor PAIS in Nederland:
🧵
🧵
This was inspired by this blog post by @atelfo
with a long list of interesting questions about biotech,
atelfo.github.io/202...
and the answer to 1 question by @mattsclancy citing the 2 papers I used here
with a long list of interesting questions about biotech,
atelfo.github.io/202...
and the answer to 1 question by @mattsclancy citing the 2 papers I used here
September 4, 2025 at 2:01 PM
This was inspired by this blog post by @atelfo
with a long list of interesting questions about biotech,
atelfo.github.io/202...
and the answer to 1 question by @mattsclancy citing the 2 papers I used here
with a long list of interesting questions about biotech,
atelfo.github.io/202...
and the answer to 1 question by @mattsclancy citing the 2 papers I used here
Long Covid had received cumulatively about $1.8B from the NIH, that's about $1.4B in 2010 dollars
The models predict 2.02 to 3.31 drugs, based on just this amount. In 17-24 years after funding though..
The models predict 2.02 to 3.31 drugs, based on just this amount. In 17-24 years after funding though..
September 4, 2025 at 2:01 PM
Long Covid had received cumulatively about $1.8B from the NIH, that's about $1.4B in 2010 dollars
The models predict 2.02 to 3.31 drugs, based on just this amount. In 17-24 years after funding though..
The models predict 2.02 to 3.31 drugs, based on just this amount. In 17-24 years after funding though..
So, where do ME/CFS and Long Covid place on this?
ME/CFS has received, 2008-2024, only a paltry $157M from the NIH.
Adjusted for inflation, that's ~$137M in 2010 dollars.
Only 19-32% of the way to a single approved drug
ME/CFS has received, 2008-2024, only a paltry $157M from the NIH.
Adjusted for inflation, that's ~$137M in 2010 dollars.
Only 19-32% of the way to a single approved drug
September 4, 2025 at 2:01 PM
So, where do ME/CFS and Long Covid place on this?
ME/CFS has received, 2008-2024, only a paltry $157M from the NIH.
Adjusted for inflation, that's ~$137M in 2010 dollars.
Only 19-32% of the way to a single approved drug
ME/CFS has received, 2008-2024, only a paltry $157M from the NIH.
Adjusted for inflation, that's ~$137M in 2010 dollars.
Only 19-32% of the way to a single approved drug
Azoulay et al. (2019) find that $10 million in public funding yields 2.7 new patents (though only 1.4 in the same disease area!)
Only 1 per 116 patents in their database is linked to a successful drug. So, $430 million in cumulative public funding needed for 1 drug approval
Only 1 per 116 patents in their database is linked to a successful drug. So, $430 million in cumulative public funding needed for 1 drug approval
September 4, 2025 at 2:01 PM
Azoulay et al. (2019) find that $10 million in public funding yields 2.7 new patents (though only 1.4 in the same disease area!)
Only 1 per 116 patents in their database is linked to a successful drug. So, $430 million in cumulative public funding needed for 1 drug approval
Only 1 per 116 patents in their database is linked to a successful drug. So, $430 million in cumulative public funding needed for 1 drug approval
Toole (2012) found that 1% increase in NIH funding increases new drugs (17-24y later) by 1.8%. Or about $706M in 2010 USD for 1 drug approval
www.sciencedirect.co...
www.sciencedirect.co...
September 4, 2025 at 2:01 PM
Toole (2012) found that 1% increase in NIH funding increases new drugs (17-24y later) by 1.8%. Or about $706M in 2010 USD for 1 drug approval
www.sciencedirect.co...
www.sciencedirect.co...
How much does public research funding affect drug development & market success?
Two papers have looked at this (h/t @mattsclancy @Atelfo ).
Based on these, I ran some quick calculations for ME/CFS and Long Covid
🧵
1/
Two papers have looked at this (h/t @mattsclancy @Atelfo ).
Based on these, I ran some quick calculations for ME/CFS and Long Covid
🧵
1/
September 4, 2025 at 2:01 PM
How much does public research funding affect drug development & market success?
Two papers have looked at this (h/t @mattsclancy @Atelfo ).
Based on these, I ran some quick calculations for ME/CFS and Long Covid
🧵
1/
Two papers have looked at this (h/t @mattsclancy @Atelfo ).
Based on these, I ran some quick calculations for ME/CFS and Long Covid
🧵
1/
- 100K for Chicago. I looked at some footage and it's hard to get a full picture, but 10-20K seems more plausible to me
m.youtube.com/watch?v=MKvt...
www.mapchecking.com#bAAAAQOuIJ0K...
m.youtube.com/watch?v=MKvt...
www.mapchecking.com#bAAAAQOuIJ0K...
June 18, 2025 at 10:59 AM
- 100K for Chicago. I looked at some footage and it's hard to get a full picture, but 10-20K seems more plausible to me
m.youtube.com/watch?v=MKvt...
www.mapchecking.com#bAAAAQOuIJ0K...
m.youtube.com/watch?v=MKvt...
www.mapchecking.com#bAAAAQOuIJ0K...
- 200K noted for LA. Aerial footage suggests something like 20-40K
m.youtube.com/watch?v=Fvgt...
www.mapchecking.com#bAAAAQAQ4CEI...
m.youtube.com/watch?v=Fvgt...
www.mapchecking.com#bAAAAQAQ4CEI...
June 18, 2025 at 10:59 AM
- 200K noted for LA. Aerial footage suggests something like 20-40K
m.youtube.com/watch?v=Fvgt...
www.mapchecking.com#bAAAAQAQ4CEI...
m.youtube.com/watch?v=Fvgt...
www.mapchecking.com#bAAAAQAQ4CEI...
I don't like the BSky Discover algorithm. It's showing so much irrelevant stuff to me, and not taking my feedback into account enough: here's 6/7 irrelevant
May 27, 2025 at 7:08 AM
I don't like the BSky Discover algorithm. It's showing so much irrelevant stuff to me, and not taking my feedback into account enough: here's 6/7 irrelevant
Okay but they didn't have to make fun of your height like this 😂
April 23, 2025 at 8:29 AM
Okay but they didn't have to make fun of your height like this 😂
St. Paul's, Minnesota
41K - 51K
Clear view on YouTube:
m.youtube.com/watch?v=8vE_...
Map estimate
www.mapchecking.com#bAAAAQGzRM0J...
41K - 51K
Clear view on YouTube:
m.youtube.com/watch?v=8vE_...
Map estimate
www.mapchecking.com#bAAAAQGzRM0J...
April 6, 2025 at 7:34 PM
St. Paul's, Minnesota
41K - 51K
Clear view on YouTube:
m.youtube.com/watch?v=8vE_...
Map estimate
www.mapchecking.com#bAAAAQGzRM0J...
41K - 51K
Clear view on YouTube:
m.youtube.com/watch?v=8vE_...
Map estimate
www.mapchecking.com#bAAAAQGzRM0J...
April 6, 2025 at 7:34 PM
Blue line isn't entirely accurate. Based on this graph
March 20, 2025 at 1:48 PM
Blue line isn't entirely accurate. Based on this graph
Apologies for the terrible editing skills, but this is the graph I want to see, + maybe higher accuracy/reliability numbers (95%? 99%?)
It's not obvious to me 50% is the right figure to look at
It's not obvious to me 50% is the right figure to look at
March 20, 2025 at 1:47 PM
Apologies for the terrible editing skills, but this is the graph I want to see, + maybe higher accuracy/reliability numbers (95%? 99%?)
It's not obvious to me 50% is the right figure to look at
It's not obvious to me 50% is the right figure to look at
This is moving the goalposts. Your earlier post was factually wrong and it would suit you to admit that.
Also, there should be limits to payment & US anesthesiologists are grossly overpaid - it's the doctors that are driving healthcare costs, not "greedy" insurance companies
Also, there should be limits to payment & US anesthesiologists are grossly overpaid - it's the doctors that are driving healthcare costs, not "greedy" insurance companies
December 7, 2024 at 8:07 PM
This is moving the goalposts. Your earlier post was factually wrong and it would suit you to admit that.
Also, there should be limits to payment & US anesthesiologists are grossly overpaid - it's the doctors that are driving healthcare costs, not "greedy" insurance companies
Also, there should be limits to payment & US anesthesiologists are grossly overpaid - it's the doctors that are driving healthcare costs, not "greedy" insurance companies
Zorgwekkend!
Dit zegt prediction market Manifold:
(Ben benieuwd of je zelf ook kwantitatieve voorspelling durft te maken)
Dit zegt prediction market Manifold:
(Ben benieuwd of je zelf ook kwantitatieve voorspelling durft te maken)
December 7, 2024 at 11:12 AM
Zorgwekkend!
Dit zegt prediction market Manifold:
(Ben benieuwd of je zelf ook kwantitatieve voorspelling durft te maken)
Dit zegt prediction market Manifold:
(Ben benieuwd of je zelf ook kwantitatieve voorspelling durft te maken)
Bad take.
Anesthesiologists were just going to get paid less. It wasn't allowed to move that cost onto patients.
www.vox.com/policy/39003...
Anesthesiologists were just going to get paid less. It wasn't allowed to move that cost onto patients.
www.vox.com/policy/39003...
December 7, 2024 at 11:04 AM
Bad take.
Anesthesiologists were just going to get paid less. It wasn't allowed to move that cost onto patients.
www.vox.com/policy/39003...
Anesthesiologists were just going to get paid less. It wasn't allowed to move that cost onto patients.
www.vox.com/policy/39003...
November 30, 2024 at 12:35 PM
In a recent patient consultation, Low Dose Naltrexone (LDN) came in as most preferred for a trial. There's supposedly even discussion about ‘one large trial vs. many small ones’
Here's 6 reasons why I think NIH shouldn't fund a (large) trial for LDN
🧵
Here's 6 reasons why I think NIH shouldn't fund a (large) trial for LDN
🧵
November 22, 2024 at 8:35 PM
In a recent patient consultation, Low Dose Naltrexone (LDN) came in as most preferred for a trial. There's supposedly even discussion about ‘one large trial vs. many small ones’
Here's 6 reasons why I think NIH shouldn't fund a (large) trial for LDN
🧵
Here's 6 reasons why I think NIH shouldn't fund a (large) trial for LDN
🧵
It is not the same as PEM (see screenshot), but I think it's a good 'meme' with viral potential. It contains the idea of effort generating bad effects, and visually I think it's a great image reflecting the struggles ME/CFS had gone through, fighting against a lot of resistance
November 20, 2024 at 1:03 PM
It is not the same as PEM (see screenshot), but I think it's a good 'meme' with viral potential. It contains the idea of effort generating bad effects, and visually I think it's a great image reflecting the struggles ME/CFS had gone through, fighting against a lot of resistance