Doe jij ook mee?
Praat mee met onze plannen. En als je wil kun je zelfs meehelpen als vrijwilliger.
Maar word in ieder geval lid van de ME/cvs Vereniging, want of je nu wel of niet actief meepraat of helpt: met elk extra lid wordt onze vuist weer sterker en groter.
I want to thank @LongCovidPharmD for collecting such a great dataset and making it available for analysis! 🙏🏻
4/4
You can read the full piece on my Substack!
open.substack.com/pu...
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The top treatments are (on a scale of -5.0 to 5.0):
Omalizumab/Xolair: 0.69 - 4.22 (not significant)
IV Saline: 1.84 - 2.14
Maraviroc:1.23 - 2.30
Ketamine: 0.93 - 2.40
Enoxaparine or unfractionated heparin: 1.00 - 2.29
Ivabradine: 1.29 - 1.85
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I re-analyzed the n = 3,925 TREATME survey and the results are.. pretty interesting!
The original treats any improvement the same regardless if it's small or large. I instead calculated weighted average effect scores.
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I've learned all from discussing it with AI. I can send you a draft blog post that actually discussed UMN as an advocacy target that I wrote in June and never got to finish
03.12.2025 13:30 — 👍 1 🔁 0 💬 0 📌 0
In this post the research estimated $400-700M of NIH funding per approved drug
x.com/PatientPersist...
But:
1) This didn't include global funding
2) data from 20-30y ago. Drug dev has become even more expensive
Yes, we need more funding.
We also need regulatory change.
@SolveCFS @ahandvanish @LisaAMcCorkell @Meighanstone @Rorpreston @mecfsskeptic
02.12.2025 22:24 — 👍 1 🔁 0 💬 1 📌 0
PAIS getting labeled 'unmet medical need' would be worth >$1B in research funding!
It takes ~$1B in public funding to lead to 1 successful drug. UMN would probably lead to MULTIPLE effective drugs <10y
What can you do?
Contact SANT committee members: @StineBosse
@tomislav_sokol
@VladVoiculescu
In Netherlands: demand @MinVWS clarify Dutch position on UMN criteria.
Join forces with @ESPKU_tweets & other patient groups already fighting this. Trilogues end Q1 2026.
Patient groups for other conditions (e.g., phenylketonuria) are raising the same alarm: this creates a two-tier system where some diseases attract investment while others are told their suffering "is not severe enough."
The trilogues deciding this end Q1 2026
Unmet medical need designation can lead to conditional drug approval after promising Phase 2 trial results. This brings the drug to patients faster, and makes it more attractive for companies to develop drugs for us!
02.12.2025 20:46 — 👍 1 🔁 0 💬 1 📌 0
ALERT🚨
The EU is redefining "unmet medical need" as part of its pharma reform. Drugs meeting this standard get extra market exclusivity and regulatory priority. But the proposed criteria will likely keep excluding non-progressive & "non-lethal" diseases like 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.
2. PAIS'en worden opgenomen in geneeskundeopleidingen:
De NFU voegt ME/CVS, POTS/OI en andere PAIS'en toe aan het Raamplan Artsopleiding
Er zijn bijna geen dokters met kennis te vinden.
Het Raamplan bepaalt wat er in de opleiding hoort. Laatste aanpassingen waren 2020 en 2009.
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.
Hier zijn 3 concrete wensen die ik heb voor PAIS in Nederland:
🧵
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 — 👍 0 🔁 0 💬 0 📌 0
Other 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...
