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The Rosmalen paradox. I want to secure funding but unfortunately for me it is biomedical research: ME/CFS isn't a FND. I want to do my day to day research: ME/CFS is a FND.

I'm probably heavily biased since I don't belong to the mild/moderate group, but I wouldn't have a problem with a biomarker for severity. That would be an outstanding finding, if it indeed measures more than inactivity. Long-Covid patients haven't been sick for too long so a marker might not...

There were some decent visualisation of the data. Unfortunately, with Twitter down I can't find it. At the end of the day it is the order of magnitude that is deceicive. Whether the numbers are still slightly increasing or have stabilised is not too decisive if one sees how significant they...

I agree there are multiple difficulties and any assessement is hard and becoming increasingly harder to do in the future. However, that doesn't mean we should make up numbers. The numbers are significant enough already, they are gigantic! But the data I've seen, perhaps I've looked at the wrong...

Is the statement "our community is unfortunately growing larger and larger as the days pass." backed by data? The last data I saw, which is very hard to come across and definitely not too acurate, was that the number of Long-Covid patients had roughly stabilised with the number of recovering...

A year ago a small, yet significant in what it found, preprint emerged from this study https://www.s4me.info/threads/preprint-long-covid-is-associated-with-extensive-in-vivo-neuroinflammation-on-18f-dpa-714-pet-2022-visser-et-al.27980/. Unfortunately, it seems results didn't hold up at a larger...

Well it seems like I'm not the only one confused by the selection of patients. According to the above Tweet from Prusty either severe LC patients or HC are taken from the Charite, none of which is stated as such in the paper, or did I miss something (perhaps a LC & ME/CFS overlap that is...

Yes, there's actually even quite a few studies on this subject. It has been shown that blood plasma levels of cellular fibronectin increase after major trauma resulting in vascular tissue damage, after inflammation, in other diseases such as atherosclerosis, ischaemic heart disease, inflammatory...

That is correct. I guess I got a little bit confused with the selection of different patients. Thanks for correcting me.

Yes. Some ME/CFS patients might also have LC+ME/CFS. Furthermore those patients called HC, never underwent a Covid test, so it isn't even clear how they differ from the no LC group.

To add to that levels of cellular Fibronectin are usually extremely low in plasma and only trace amount of it are detactable in plasma. So it isn't clear to me whether the measurements are mainly statements about cellular of plasma fibronectin. Plasma levels of cellular fibroncetin are known to...

Performs a test of 120 things on a cohort of 12 patients vs 3 controls. Constructs a machine learning classifier based on these results. Says nothing about the accuracy of this classifier amongst this cohort on which is was constructed (which will probably be close to 100% due to the lacking...

The problem I have with this paper is the lack of consistency at different levels. Sometimes they use some ROC analysis to provide some statistical analysis for a certain set, sometimes they do multivariate clustering on a different tiny subset, sometimes they do something different or split the...

The paper has now been published and is accessible https://www.frontiersin.org/articles/10.3389/fmed.2023.1208181/full?utm_source=F-NTF&utm_medium=EMLX&utm_campaign=PRD_FEOPS_20170000_ARTICLE

Now published - see post #12 I just had to share this study, it's way too funny and a good example of the quality of psychological research. I'm not using the usual formatting here as there's no use to it. It starts of funnily with being published in the European Journal of Forest Research...

Soon you'll be considered to have a psychosomatic illness if you criticise clear flaws in psychosomatic research. The cure for which is of course GET, where your "graded exercise" is the graded acceptance of such flaws.

If they are focusing on circadian rhythms I'd be interested in Cortisol readings as well.

These trials do exist. There was the metformin trial that made big waves and now there's a massive randomized Paxlovid trial (n=2000) looking at the prevention of Long-Covid https://classic.clinicaltrials.gov/ct2/show/NCT05852873?term=Paxlovid&cond=Long-COVID&draw=2&rank=3.

I agree and that creates even more political and pseudoscientific effort for those wanting to avoid the sceneraio, i.e. those who caused and are causing the situation. There will be larger efforts to dismiss us if liability lawsuits suddenly become a realistic scenario. But I don't want to...

I think the power structures are particularly relevant. For a large part this means that LC is still viewed as psychosomatic. Admitting that LC is physiological and at the same time can cause ME/CFS at a political level, doesn't only mean that one has neglected and forcefully harmed ME/CFS...