Sources:
Toole (2012) - www.sciencedirect.co...
Azoulay et al. (2019) - academic.oup.com/res...
@siebepersists.bsky.social
Be kind Be rational Protect democracy Govern AGI Cure ME/CFS & Long Covid
Sources:
Toole (2012) - www.sciencedirect.co...
Azoulay et al. (2019) - academic.oup.com/res...
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
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.
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!
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:
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..
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
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
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...
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
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@jonfavs.bsky.social @chenoweth.bsky.social @mattyglesias.bsky.social @natesilver538.tweet.pub
18.06.2025 12:05 โ ๐ 0 ๐ 0 ๐ฌ 0 ๐ 0Other numbers that seem high:
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...
- 200K for NYC. Source claims 25-50K
(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...
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
I already left comments on their spreadsheet yesterday saying that many numbers were greatly and obviously inflated. @gelliottmorris.com pushed out these claims based on bad data
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Looks like we have very different views on how the world works
15.06.2025 15:12 โ ๐ 0 ๐ 0 ๐ฌ 0 ๐ 0You realize that drugs cost >$1B to develop, per drug? Who's going to make that investment if they can't make money off it?
15.06.2025 11:28 โ ๐ 0 ๐ 0 ๐ฌ 0 ๐ 0Yes it's definitely a big lever, and I hope that AI peer review will be able to lift quality
15.06.2025 10:12 โ ๐ 1 ๐ 0 ๐ฌ 0 ๐ 0I wrote up some quick thoughts on the different levers we can pull to solve a disease:
1. Research quantity (increase funding)
2. Research quality
3. Market incentives
Seems to me that patient advocates tend to focus on #1 and neglect #3.
(Link in reply)
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
27.05.2025 07:08 โ ๐ 0 ๐ 0 ๐ฌ 0 ๐ 0Okay yeah that seems good :)
28.04.2025 06:45 โ ๐ 2 ๐ 0 ๐ฌ 0 ๐ 0Please don't report anecdotes from people in the trials btw. It's bad for trials
25.04.2025 06:38 โ ๐ 6 ๐ 0 ๐ฌ 1 ๐ 0Okay but they didn't have to make fun of your height like this ๐
23.04.2025 08:29 โ ๐ 2 ๐ 0 ๐ฌ 1 ๐ 0Rekenvoorbeeld (verzonnen cijfers): 100 huizen zonder aanpassingen = โฌ100/stuk Meteen bouwen met aanpassingen = + โฌ5/stuk Eenmalige aanpassingen = โฌ20/stuk Als er 5 huizen achteraf worden aangepast, kost dat 100x100 + 5x20 = 10.100 Als alles meteen wordt gebouwd met aanpassingen, kost dat 100x105 = 10.500 Ik zeg niet dat de cijfers per se negatief uitkomen, maar zonder cijfers kunnen we niet stellen wat een beter beleid is! Sterker nog, als de ontwikkelaar de huizen slechts kan verkopen voor 103, dan wordt er helemaal niets gebouwd! Dit is vaak de reden waarom sociale huurwoningen niet gebouwd worden. P.S. ik heb zelf ook baat bij een aangepaste woning
23.04.2025 08:10 โ ๐ 0 ๐ 0 ๐ฌ 2 ๐ 0Lijkt me handig om de baten af te wegen tegen de kosten, nietwaar?
23.04.2025 06:36 โ ๐ 0 ๐ 0 ๐ฌ 1 ๐ 0Ah thank you other Chris Ponting!
22.04.2025 20:33 โ ๐ 1 ๐ 0 ๐ฌ 1 ๐ 0@chrisponting.bsky.social
It would be very valuable if this dataset were improved screening all 1,455 cases for PEM & formal criteria.
This is possible, but resource-intensive
(Also, the data is from 2006-2010)