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
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So much ME research treats PEM either as an afterthought, or at best as something only triggered by physical overexertion.
But PEM should be absolutely central in ME research, as I argue in my latest blog post
viralpersistence.substack.co…
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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…
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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.
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There's something very scary about reacting badly to so many meds. It's not just about not being able to try things for my chronic illness. What about emergencies. What about life-saving situations. What if I ever need end-of-life care to ease the suffering.
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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.
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Alright so it's greatly overhyped, but a quick chat with Claude (biased I know) leads me to believe this would be a decent paper in a normal genomics journal. Not a nothingburger.
Interestingly, 10 reruns didn't find the repeat array, so it was quite a lucky hit.
I work in CRISPR discovery research. This is one of the most exaggerated nothing-burgers ever and would be laughed out of the room if a human scientist attempted to publish something like this. (cont.)
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And it's probably wrong to see this as the result of "months of compute". Their wet lab only just launched.
Like with many of these findings, they show that AI is progressing at a rapid clip relative to other technologies, but mostly these are small steps forward.
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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…
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Bad news...
NEW: OMB chief Russ Vought & NIH director Jay Bhattacharya have been fighting for months over Trump plan to exert political control over NIH grants. It got so bad that Russ V. refused to meet with Jay B. Now Trump is preparing an executive order. nytimes.com/2026/09/20/scien…
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This is so cool. There exist partnerships between funders & journals to publish registered reports.
cos.io/initiatives/registere…
Once a proposal is accepted, the scientists are guaranteed publication, but are committed to a specific design & analysis. Open data is usually enforced.
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This would solve a lot of issues in our field. Scientists would no longer be incentivized to dig for positive results that don't hold up to scrutiny and don't replicate.
Open data allows other researchers to use, explore, and scrutinize.
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Prediction: Bezisterim will not meet its pre-specified primary outcome if it ever makes it to a Phase 3 trial. (90% confident)
Unreliable company, weak drug, weak data.
Encouraging topline results from @BioVie_Pharma's ADDRESS-LC trial of Bezisterim on people with #LongCOVID, where @CoRESinai was a trial site. Bezisterim is a very interesting oral medication that effectively crosses the blood brain barrier and reduces
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investors.bioviepharma.com/n…
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Vier mensen pleegden vorig jaar euthanasie vanwege postcovid ift.tt/GZy3Coe
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PwME, did you have a prodrome* before full-blown ME/CFS?
*A prodrome is the early set of symptoms that signals a disease or episode is starting, before the full, characteristic signs appear.
11%
yes, days or weeks only
45%
yes, months long
21%
no
23%
see results
194 votes • Final results
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Results
To my surprise, most ME patients report a prodrome!
58% report one for months or longer
The comments do specify that the poll didn't capture the diversity of it. Some had:
- prodrome for years
- PEM but not "full-blown ME"
- symptoms that disappeared again before ME appeared
ALT Bar chart of an X poll asking whether people with ME/CFS had a prodrome before full onset. Of 149 votes, 58% say yes lasting months, 14% yes for days or weeks, and 28% no. Any prodrome: 72%, 95% CI 65 to 79. Self-selected samp
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Not much of a surprise: my X followers skew very left. (Even though I am more "centrist" than average)
This survey has all kinds of issues, but I do think the general point stands: the patient advocacy community is not very politically diverse. And I think that's an issue.
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Obviously worldviews cannot be captured in a single dimension. And we should resist letting ideology form our answers. Instead, we should look at all the facts and how the systems work and decide where best to put our efforts.
(E.g.
viralpersistence.substack.co…)
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