Siebe.

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Siebe.

Siebe.

@PatientPersists

I write the blog 'How to solve a disease?' with a focus on Long Covid & ME - rigorous science, clinical trial abundance, and effective advocacy.

Breda, Nederland Katılım Mart 2015
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Siebe.
Siebe.@PatientPersists·
To make LC more attractive to pharma we need 1. A surrogate biomarker 2. An international patient registry ➡️ reduces costly recruitment 3. Public precommitment by FDA for accelerated pathways for the first effective drugs Explained: atelfo.github.io/2023/12/23/bio… #UniteToFight2024
UniteToFight@U2Fight_World

🔍 Have an idea that needs the spotlight? Here's your chance! Recommend a topic for a public session! How ? Post your own tweet, mention your topic, and use #UniteToFight2024. The most mentioned topic takes the stage! 🚀 at our global conference Let's shape the conversation together! 💡 #CommunityVoice #MECFS #LongCovid

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Siebe.@PatientPersists·
@PolitiekeStefan Voor mensen met Long Covid zijn herinfecties nog steeds een risico, maar gelukkig steeds minder. En er blijft dus jaarlijkse oversterfte
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Siebe.@PatientPersists·
Laagste niveau corona ooit gemeten in rioolwater (15)! Goed nieuws, en ook wat slecht nieuws🧵
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Siebe.@PatientPersists·
Dit zijn dus waarschijnlijk geen/weinig directe doden van corona, maar wel indirect - of door gezondheidsschade, of doordat het zorgsysteem verzwakt is
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Siebe.@PatientPersists·
Maar dat betekent niet dat de oversterfte is opgehouden ten opzichte van wat je in 2019 zou verwachten! CBS berekent geen oversterfte meer, en RIVM gaat vrolijk verder t.o.v. 2024! Vreemd.. @rubenivangaalen @mzelst @mkeulemans mis ik hier iets?
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Siebe.@PatientPersists·
@tessfalor Or actually when I can't quite rest, I have something like this that scrolling Reels actually seems to call my body down but it's temporary and still costs me a spoon
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Siebe.@PatientPersists·
@tessfalor (note that comments will not give a representative sample, only answer "is this super rare" and apparently it's not :). I don't have this though)
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Tess Falor, Ph.D. | Renegade Research
Tess Falor, Ph.D. | Renegade Research@tessfalor·
Does anyone have an inverted pattern of stress in Garmin data? (Higher stress while sleeping and "rest" only while awake and sitting up.)
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Benjamin Todd
Benjamin Todd@ben_j_todd·
In 1958, an unknown soviet bureaucrat, Victor Zhdanov, lobbied the WHO to start a smallpox eradication campaign. Credit for the eradication often goes to DH Henderson, but he only accepted the job reluctantly. Smallpox killed 300-500 million in the 20th century.
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ME/CFS Science
ME/CFS Science@mecfsskeptic·
1) Interesting blog by Siebe: - "How I learned to doubt a paper" He explains how he gradually became more skeptical of claims on ME/CFS and Long Covid in scientific publications and learned to focus on methodology, replication, statistical analysis etc.
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zedsrigil
zedsrigil@sunsweptforest·
Good thread on a useful blog by @PatientPersists 'Science, we’re increasingly seeing, is not in a healthy place. Scientists are highly biased towards publishing positive results and getting citations. They have to, to keep their jobs and secure grant 1/3
ME/CFS Science@mecfsskeptic

1) Interesting blog by Siebe: - "How I learned to doubt a paper" He explains how he gradually became more skeptical of claims on ME/CFS and Long Covid in scientific publications and learned to focus on methodology, replication, statistical analysis etc.

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Siebe.
Siebe.@PatientPersists·
The return on investment for funding protest organization is pretty insane. Organizations should support more protests than some incremental research project
Siebe.@PatientPersists

If there was €100K/year available for protest organization in The Netherlands, that'd be enough to hire the ops help to pull off 2-3 actions/yr I'd estimate that within 2 years, the probability of a research program worth €15M/yr increases from 5% to 70% ROI would be >100x!

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Siebe.@PatientPersists·
If the protests only increase the chance of ~€15M/yr by a mere 1 percentage point, the Return On Investment would still be ~5x
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Siebe.@PatientPersists·
If we assume that the research program lasts for 10 years, and a 7% per year discount rate, the Net Present Value at year 0 (before the protests) is €92M in research funding! Of course, 5% chance is success to 70% is a big assumption. What's the minimum % jump needed?
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Siebe.@PatientPersists·
If there was €100K/year available for protest organization in The Netherlands, that'd be enough to hire the ops help to pull off 2-3 actions/yr I'd estimate that within 2 years, the probability of a research program worth €15M/yr increases from 5% to 70% ROI would be >100x!
Siebe.@PatientPersists

Agreed. Funders seem to gravitate towards "respectable" efforts if they're even funding ME/CFS at all. But political pressure, which requires protests, have the highest leverage! From my latest blog post: 'Without protests, IACI patients won't get far' open.substack.com/pub/viralpersi…

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Keşfet

@PolitiekeStefan @RudeDeltaDude @R9_Fury @simon_faire @JOG412 @rubenivangaalen @mzelst @mkeulemans