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
Joined March 2015
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Siebe. retweeted
We’ve been blown away by the response to my interview with @BBCSport & @KatieFalkingham , thank you so much to everyone who has taken the time to read and engage with it ❤️ millions of views across multiple platforms really is immense.
We have since written to @andyburnham , calling on the @UKLabour government to fund research into this horrific illness. I know there’s so much more we could say, but with limited capacity, we’ve tried to focus on the lack of funding, resources in the NHS and how much it’s actually costing the government.
As you can see on the slides, it has been drastically underfunded compared to other illnesses and it is currently costing the UK Government far more than it would cost to fund research. ME is most often a post-viral illness. Therefore, since the start of the Covid pandemic, we’ve seen cases increase drastically and they will continue to increase. We need funding into research urgently. With estimates of people with ME being around 1.35 million, this is a lot of lives destroyed.
I’ve had thousands of messages on multiple platforms since sharing my story so please bear with me ❤️
Thanks to @ThereForME_UK and @wecrunchme for the stats.
Siebe. retweeted
Amendement @mirjambikker: 1 miljoen voor Long Covid onderzoek in 2027. En de positieve waardering van de minister die vragen oproept.
De minister lijkt het direct toe te voegen aan de zopas begrote gelden voor trials, maar ik weet niet of dat de bedoeling was, of onderzoek naar de ziektemechanismen.
En die 0.8 voor "beheer": is dat overhead voor deze specifieke projecten, of voor het op papier verlengen van het lopende programma t/m 2031? Waarom wordt het programma nu al voor de tweede keer verlengd zonder proportioneel geld voor die jaren?
Het ging van:
32 miljoen voor 4 jaar,
40 miljoen voor 4 jaar,
40 miljoen voor 6 jaar,
43 (of nu 44) miljoen voor 9 jaar.
De tweede helft van dit inmiddels langlopende programma is veel leger dan de eerste. Wat zijn we dan aan het verlengen? De cynicus in mij zegt dat we voortaan in kamerbrieven de minister gaan zien zeggen dat de kamer en patiënten niet zo veeleisend moeten zijn omdat er wel degelijk langetermijn onderzoeksbudget is, wel tot 2031.
Ik vind het moeilijk wat over het amendement te typen qua mening. Er eindigen dit jaar een heleboel onderzoeken, en veel van die wetenschappers willen door, wat nuin de meeste gevallen niet kan.
De intenties van het amendement zijn goed, en het geeft zelf ook al aan dat er meer en structureel nodig is. Elk miljoen betekent een paar onderzoekers die de komende tijd verder kunnen.
Het zou zo mooi zijn als er ooit eens een lange termijn initiatief van een minister zelf komt, zodat het niet van deze losse brokken vanuit de kamer moet komen. Het is heel goed dat Kamerleden zich hier voor willen inzetten.
En dan stop ik met praten.
Siebe. retweeted
Interruptie @InesKostic op @wendel_hilde over Long Covid en PAIS
We vragen om toekomstperspectief, door structurele onderzoeksgeld en het oprichten van zorg die er nu niet of nauwelijks is. Beide vergen politieke actie.
Niet morgen af, wel morgen eindelijk (weer) starten. Want als structureel beleid maar lang genoeg uitblijft, wordt het vanzelf urgent.
Interruptie van @InesKostic bij Vervuurt (D66) over toekomstperspectief voor PAIS.
Iets wat in deze VWS-begroting ontbreekt, maar er wel zou moeten zijn. Door:
-ambitieus langetermijn onderzoeksprogramma
-totdat dat er is: nu snel geld zodat niet nog meer wetenschappers weg gaan
-expertisecentra langjarig verankeren en administratieve ruimte bieden, door actieve rol minister
-actief zorg oprichten die er nu niet is, zodat er volwaardige (medische) zorg komt voor alle PAIS patiënten
Siebe. retweeted
Vragen VWS-begroting beantwoord
In deze tabel is de kaalslag te zien. Zeker gezien er t/m 2024 meer was, oa 50 miljoen per jaar paramedische zorg
We gaan toe naar 1 miljoen voor grondig uitgeklede expertisecentra, en 0 voor onderzoek
Ik licht nog wat uit🧵
Siebe. retweeted
💠Ook kinderen en jongeren leven met PAIS – kom naar de PAIS Protestwake 🧸
Die ontroerende oproep van Kinderen en jongeren met Long Covid namen wij graag over. Lees en overweeg.
tinyurl.com/4yc65xvc
tinyurl.com/55xpj3j7
Siebe. retweeted
How ARPA-H is planning to cut clinical trial times from 10+ years to <4 years:
1. 'Phaseless' clinical trials - move towards replacing phase 1 → 2 → 3 with adaptive trials that can cut failed drugs (or advance good ones) faster.
2. Simulate trial outcomes before starting, with digital twins - to reduce reliance on large control groups.
3. AI agents for trial operations.
4. Turn ordinary hospitals into reusable clinical trial sites, and gets AIs to flag eligible trials to doctors and patients.
ARPA-H Advancing Clinical Trials Announcement xitter.cf/i/broadcasts/1vKpPNOwV…
Siebe. retweeted
Tired of seeing the same lame stock photos of clearly healthy actors draping the back of their hands over their foreheads to represent ME?
@tink_ina and I feel the same way. That's why we're starting a photo gallery showcasing very severe patients that will be promoted to journalists and relevant organizations for use in articles and media.
We need your submissions to help curate the highest quality and most representative photos for this project. If you have photos of yourself or someone you take care of, please submit them: lcmedata.org/severephotos
Siebe. retweeted
There are a number of reasons why first-time PIs are getting older and very old faculty are finding it easier to win continued resources.
I argue that one of the main issues is using publication history as a metric for scientific prowess.
I think we can and should fix this.
Read the full piece here: adam.rochussen.xyz/p/geronto…
Siebe. retweeted
The average age at discovery for Nobel Prizes has always been below 40.
It’s showing signs of creeping upwards now, but only because we have made it very hard for young people to gain scientific independence.
Siebe. retweeted
Public Service Announcement:
Avoid using Google Search AI Overview for scientific or medical questions.
In order to match the speed at which people are accustomed to seeing Google search results, it's optimized to give you a fast summary from web sources. This means it frequently hallucinates, gets facts wrong, or oversimplifies answers.
For scientific and medical questions, use a frontier AI like Claude or ChatGPT, which are optimized for these queries.
Siebe. retweeted
This is a beautiful trial that makes so much intuitive sense.
In Crohn's disease: start advanced therapy immediately after diagnosis (here anti-TNF, plus an immunomodulator) vs. standard 'step up' therapy - start with steroids, add an immunomodulator and then anti-TNF as needed.
Early advanced therapy reduced the need for surgery, hospitalisation and stricturing/penetrating complications.
Source: thelancet.com/journals/langa…
Siebe. retweeted
Vier mensen pleegden vorig jaar euthanasie vanwege postcovid ift.tt/GZy3Coe
Siebe. retweeted
This level of antagonism is absolutely shameful. That researchers have to go through this sort of danger and hatred is absolutely horrific. The perpetrators of this behaviour towards them need to be identified and called out. @ISLCPAIS
Siebe. retweeted
In the field of ME, there was famously an attempt by the Science Media Centre backed psychiatrists to paint a picture of the ME patient community as abusive and dangerous. It didn't hold any weight.
If someone were inclined to make the same case for LC patients, maybe it would.
Siebe. retweeted
People with ME/CFS deserve so many more people bringing “For Frodo” energy for them.
Siebe. retweeted
The frustration over how French media are covering ME/CFS after this important policy win is understandable, but unfortunately this is somewhat expected.
We went through the same process in Austria and Germany. Changing policy is often only the first step. Advocacy then has to educate journalists about what ME/CFS is, which terminology to use, how to frame the disease, and which images are appropriate.
That takes sustained direct contact, often over one or two years. But it can work. If France follows a similar trajectory, the large majority of coverage will hopefully become accurate, serious and much closer to the perspective of ME/CFS patients and advocates.
Voilà pourquoi on doit se débarasser de cette dénomination ancienne. Les réactions en disent beaucoup: "On est tous un peu fatigués", "Beaucoup de malades ont une fatigue chronique" ou des photos de gens qui baillent au bureau... C'est
#EncephalomyeliteMyalgique!!!
Siebe. retweeted
1) The US government spent more than $ 1.8 billion in Long Covid research with hardly any progress and not a single breakthrough.
This is much more than what was ever spent on ME/CFS research.
Well, yes!
By calling every thing “#MECFS-like” they definitely set the stage.
It’s worked out great too!
Siebe. retweeted
'It is draining to exist in a body that revolts at light and sound and movement. A body that collapses in response to company, exertion, environmental changes, routine viruses – even emotions. A body capable of producing extremes of suffering, often for no discernible reason.'
I realised there was part of chronic illness that I'd not written about.
The experience of living inside a body that feels so unpredictable and unsafe.
Now I’ve written it. I’d love to know if it resonates with you.
alifehidden.com/2026/07/30/b…
