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But the Fluge/Mella pilot study - not Placebo controlled - does seem to have generated enough data to warrant the new phase II RCT, doesn't it? How would this be fundamentally different here, in the most ideal case? Ah right, I was rather thinking about potential pharmacodynamic mechanisms...

Could you elaborate? As far as I know, I don't know what data they have nor what diagnostics, inclusion criteria etc they use. If done properly, why would it not generate useful data? Genuinely curious. Also genuinely curious: how come adverse events tend not to be dose dependent? How...

I don't disagree. They likely are just piggybacking on the Fluge/Mella hypothesis they're using for their phase II. Who knows if they're on the right path. If it's actually a T-Cell mediated disease like JE seems to believe, their hypothesis might not go very far. Agree as well. I don't know...

And that might show that not everything must be "inherently ok" to be potentially useful. I'm not advocating for or against the use of teclistamab, I'm just sharing what I heard from the doctor looking into it. I personally believe there is merit in case studies to generate data, if patients...

No idea. I doubt it, I would assume they're just taking the Fluge/Mella rationale of killing LLPCs. Again, "dangerous" is relative, and specifically relative to the dose. 1g of paracetamol will help your headache, 4-5g will kill you. Is paracetamol a dangerous drug - one could argue it is, and...

I guess dangerous is relative, but yes - it seems like they're doing their own case studies. Whether the risk is higher than in a pilot trial, like the one Fluge and Mella did on Daratumumab in Norway, I don't know. Less regulated for sure. But clearly still under medical supervision. In the...

I've been in email contact with Dr Habets since his post on X and he'd been saying that by the end of July he'll know whether it has a positive effect in his case study. If so, he'd recruit more patients. Just today he sent me some more info. So it seems like he might be seeing positive...

I've been taking Agomelatine for 7 weeks now, so this might be a bit early but as a first little update: I am feeling better. The first two weeks it really messed with my sleep (nightmares, sleep paralysis) but that didn't last very long. As of now, it "cured" my sleep onset and sleep...

Sorry, I'm too fatigued to go through the past 5 pages to see if anybody brought up a potential mechanistic link between PEM and exercise/stress induced leukocytosis? I remember Dr Puta mentioning leukocytosis in connection with catecholamine release during his presentation at the ME/CFS...

To my native (and hopeful) ears it sounds a bit like he's making a distinction "...the extent of the consequences - also psychological consequences - also among school-children..." to include psychological consequences in his term consequences, but not saying Long COVID is psychological. I might...

FWIW baclofen and sodium oxybate are used in narcolepsy - and seem to improve my quality of sleep and restfulness to an extent as well. Some S4ME posts regarding orexin antagonists and orexin in PASC

Very interesting, thank you! Oh, I didn't want to imply that this could be a miracle cure. Just trying to wrap my head around potential consequences. E.g. as gamma IFN had been found increased in some studies. If I understand your hypothesis correctly, this would/should promote the vicious...

Yes, from what I've seen - and I haven't looked into it too deeply - it did seem to broadly affect lymphocyte proliferation. And was just wondering how, based on your hypothesis and isoprinosine's mechanism of action, you'd expect this to affect pwME.

Huh, I was under the impression that inosine pranobex is a legit medication with robust effect. But I'm not sure what exactly you mean by "don't do much". Thanks for your opinion in any case!

@Jonathan Edwards do you have any insights on this by any chance?

@Jonathan Edwards Following this hypothesis, would we expect any deterioration with Imunovir / inosine pranobex? (Just revisiting drugs that were in vogue at some point.) The Czech Wikipedia article on it is pretty thorough (Google Translate). Some studies mentioned further down in the article...

Has anybody made some pragmatic observations in the meantime? I've got hold of baclofen, clonidine, and agomelatine and have been trying them out for a little while. No blinding yet. To me, all of them subjectively improve sleep onset. Sleep maintenance is drastically increased by baclofen 25...

Agreed!

Abstract Post-COVID-19 syndrome (PCS) is an escalating global health concern, marked by persistent cognitive, neurological, and psychiatric symptoms following acute SARS-CoV-2 infection. Although its underlying mechanisms remain incompletely understood, mounting evidence implicates chronic...

@ME/CFS Skeptic have you had time/interest in going through this study? Potentially even the observational Russian one as it's shown an improvement in SF-36 physical functioning (but inherently flawed due to no blinding)?