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Here’s another description from Neuron-Eranet: https://www.neuron-eranet.eu/projects/MAP-FAT/ Project team Vegard Bruun Bratholm Wyller (Coordinator) Norway (RCN) Lars Tjelta Westlye Norway (RCN) Michael Witthoeft Germany (BMBF) Victor Pitron France (ANR) Persistent fatigue (PF), which is...

To me it sounds like an expensive excuse for running behavioural experiments on EBV patients. They will be looking for bio things where they know they won’t find anything of note, and then they’ll find some correlations between some of the questionnaire or behavioural test, and spin that into a...

Thank you! I’ve added dollars, euros and pounds to the post.

@Bivox (Sommerfelt) is able to identify PEM in children that don’t know anything about it. By asking the right open-ended questions when seeing them and excluding the known alternate explanations. I think we’d get much further by educating doctors about PEM and ME/CFS in general so they would...

https://prosjektbanken.forskningsradet.no/project/FORISS/359699 Wyller has just received 4.5M NOK ($440k, €390k, £340k) in funding from The Research Council of Norway (Forskningsrådet) for a project on what he calls Persistent Fatigue. Project period: 2025-2028 Project summary: Persistent...

Video here if anyone are interested: https://www.s4me.info/threads/video-the-pace-trial-a-short-explanation-graham-mcphee.4669/ Highly recommended!

It looks like they only adjusted for age and sex in addition to vaccine type. Assuming that data is valid, could this correlation not just be because people that are at a higher risk of cancer also have a higher chance of being in the groups that got vaccinated?

I don’t think we can make that assumption. If you take a look a the threads about the new DePaul questionnaire, what PEM is or isn’t is apparently not very well understood at all. https://www.s4me.info/threads/dsq-pem-survey-depaul-university-open-october-2025.46456/ The reduced ability to do...

Hope they take it seriously! In the link I posted, it says that she doesn’t endorse LP. But she very clearly does endorse LP in her substack and provides lots and lots of links to others talking about it. I have not watched or listened to the segment, so I don’t know what she actually said. But...

Thanks!

If I’ve said that or given that impression, I can’t remember the basis for it at this moment. So I don’t know if it’s correct. But Norway is a small and very interconnected country, and with a pilot only in Bergen (population of 300k) and only limited to patients that could be recruited without...

Some pushback about the very uncritical piece with Gill Deacon: They mostly go off of the BBC coverage of LP for LC that was highly critical of it, with experts calling it an abuse of scientific terms and quackery...

Why are there so many HBOT trials with no proper control group? The results are seriously unimpressive: They also had to be healthy enough to complete 40 session in 8-16 weeks. Seems like it probably was a waste of time.

I haven’t gotten very far in Hughes’ book yet, so I can’t comment on their arguments yet. I can only really speak about the Norwegian context, but it’s my impression that the BPS proponents are against e.g. any measures to reduce the spread of covid because people don’t get sick, they just have...

@forestglip we’re still running into the issue of justifying why this approach would be better for determining who should be included in studies or not, because we don’t know what we’re trying to optimise for, because we don’t know how the relevant parts of the underlying biology affects how the...

You’d have no way of knowing if you’ve actually drawn up the lines in a position that aligns with the underlying biology. All of these things would be nice in theory, but I don’t see how we could make it a reality.

We also don’t have a good reason to think that it’s not substantially different. We simply know far too little at this point.

If the sensitivity is 100 %, it would identify all cases of PEM as PEM. If the specificity is low, it would identify some cases on non-PEM as PEM. So I think what you’re suggesting is a questionnaire with virtually 100 % specificity (no false positives) and lower sensitivity (some false...

I’m sorry to hear that. They excluded Oxford.

That seems to be the opposite conclusion of e.g. Hunt and Hughes. Hunt tied the psychologisation of ME/CFS to the neoliberal (capitalistic) politics, and Hughes’ recent book seems to argue that western psychology in general has very conservative roots, with chapters like «Psychology’s roots in...