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
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
Last, please bear in mind that these were hastily created calculations (limited spoons), and I may have misunderstood something. I didn't even read the papers!
I converted the Azoulay patent amount into drugs
Also, in my interpretation here, there are no diminishing returns.
I converted the Azoulay patent amount into drugs
Also, in my interpretation here, there are no diminishing returns.
September 4, 2025 at 2:01 PM
Last, please bear in mind that these were hastily created calculations (limited spoons), and I may have misunderstood something. I didn't even read the papers!
I converted the Azoulay patent amount into drugs
Also, in my interpretation here, there are no diminishing returns.
I converted the Azoulay patent amount into drugs
Also, in my interpretation here, there are no diminishing returns.
The research shows significant spillover effects. In fact, more patents (2.2) were filed for *other* indications, than for the original indications for which the NIH grants were (1.4)
LC research is especially likely to spill over to ME/CFS! But it can also be other research!
LC research is especially likely to spill over to ME/CFS! But it can also be other research!
September 4, 2025 at 2:01 PM
The research shows significant spillover effects. In fact, more patents (2.2) were filed for *other* indications, than for the original indications for which the NIH grants were (1.4)
LC research is especially likely to spill over to ME/CFS! But it can also be other research!
LC research is especially likely to spill over to ME/CFS! But it can also be other research!
The picture looks pretty bleak for ME/CFS. We definitely need more funding for it!
Also, improvements in research quality and improvements in market incentives would significantly improve the # of expected drugs.
x.com/PatientPersist...
And there is a silver lining:
Also, improvements in research quality and improvements in market incentives would significantly improve the # of expected drugs.
x.com/PatientPersist...
And there is a silver lining:
September 4, 2025 at 2:01 PM
The picture looks pretty bleak for ME/CFS. We definitely need more funding for it!
Also, improvements in research quality and improvements in market incentives would significantly improve the # of expected drugs.
x.com/PatientPersist...
And there is a silver lining:
Also, improvements in research quality and improvements in market incentives would significantly improve the # of expected drugs.
x.com/PatientPersist...
And there is a silver lining:
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...
Other numbers that seem high:
San Francisco - 100K
Seattle - 70K
San Diego - 60K
San Francisco - 100K
Seattle - 70K
San Diego - 60K
June 18, 2025 at 10:59 AM
Other numbers that seem high:
San Francisco - 100K
Seattle - 70K
San Diego - 60K
San Francisco - 100K
Seattle - 70K
San Diego - 60K
- 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 for NYC. Source claims 25-50K
(This has been corrected to 50K)
(This has been corrected to 50K)
June 18, 2025 at 10:59 AM
- 200K for NYC. Source claims 25-50K
(This has been corrected to 50K)
(This has been corrected to 50K)
- 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...
The most egregious:
- 500K noted for Boston as the Boston Pride coincided with the protest, and Pride organizers claim they had 1M attendees. 25-50K seems more reasonable, and last year (no protest), they also claimed 1M attendees, so that doesn't support 500K for the protest
- 500K noted for Boston as the Boston Pride coincided with the protest, and Pride organizers claim they had 1M attendees. 25-50K seems more reasonable, and last year (no protest), they also claimed 1M attendees, so that doesn't support 500K for the protest
June 18, 2025 at 10:59 AM
The most egregious:
- 500K noted for Boston as the Boston Pride coincided with the protest, and Pride organizers claim they had 1M attendees. 25-50K seems more reasonable, and last year (no protest), they also claimed 1M attendees, so that doesn't support 500K for the protest
- 500K noted for Boston as the Boston Pride coincided with the protest, and Pride organizers claim they had 1M attendees. 25-50K seems more reasonable, and last year (no protest), they also claimed 1M attendees, so that doesn't support 500K for the protest
Looks like we have very different views on how the world works
June 15, 2025 at 3:12 PM
Looks like we have very different views on how the world works
You realize that drugs cost >$1B to develop, per drug? Who's going to make that investment if they can't make money off it?
June 15, 2025 at 11:28 AM
You realize that drugs cost >$1B to develop, per drug? Who's going to make that investment if they can't make money off it?
Yes it's definitely a big lever, and I hope that AI peer review will be able to lift quality
June 15, 2025 at 10:12 AM
Yes it's definitely a big lever, and I hope that AI peer review will be able to lift quality
Okay yeah that seems good :)
April 28, 2025 at 6:45 AM
Okay yeah that seems good :)
Please don't report anecdotes from people in the trials btw. It's bad for trials
April 25, 2025 at 6:38 AM
Please don't report anecdotes from people in the trials btw. It's bad for trials