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Thank you @trudeschei. Really interesting how different the time course of ME is from the typically presented one for so many respondents. As for the number of responses you got - 5822 - that's just amazing.

I've no idea about the science behind it but I sort of do this anyway because I find that if I lie down for more than about 45 minutes my POT on getting up again is much worse than if I get up briefly after 35 minutes. So my day is a series of lying down/reclining for 35 minutes, getting up and...

Another similarity that struck me is the way all 3 cases initially tried to maintain a semblance of normal life, then tried to adapt their lifestyle in order to do so - they showed remarkable grit in the face of adversity - yet overall, apart from some temporary partial remissions, they all...

Disappointing that they keep pushing that linear time course conception of PEM. Parts of it are good but others are at the very least highly misleading. Yes, immediate symptoms are different from short- and long-term ones (though many of us would call the immediate syptoms fatiguability, not...

He had a brief cameo in a quite good feature on Long Covid. They interviewed a couple of affected women who came across well but also illustrated that Long Covid has the same presentation problem as ME: they just looked way too healthy to garner the sympathy vote. Not meant as a criticism, just...

I made my comment in the context of some people on all sides aggressively making very definite statements such as Long Covid is or is not ME or that all PVF is or is not ME - when really we have no idea what's what except that we're all ill and it's high time we had a proper and open-minded look...

"Accelerate Post-Infectious Research" I like the general terminology "post-infectious illness". Better than arguing over what's ME, what's Long Covid, what's CFS, what's PVS, etc. We know so little about any of it or how to tell one from another. Let's have some decent, large longitudinal...

Way above my head. However, this study highlights the possibilities inherent in publicly available datasets that other teams can dive into, in this case with machine learning algorithms. In this study they only used a few and quite small datasets. Yet for machine learning I would have thought...

The earlier slides are a recap of recently published studies (discussed elsewhere on the forum). The slides showing the preliminary results from 2-day CPET exercise provocation studies currently underway are interesting (the transcript related to these starts at page 15). They're looking at...

Haven't been able to follow the whole thread so maybe this has been covered already but isn't it premature to assume that whatever it is the nanoneedle shows actually reflects exclusively biomedical illness? Is it not possible psychological illness could also register as 'not healthy' on the...

https://www.gets.govt.nz/MOH/ExternalTenderDetails.htm?id=23802052 I'm having some very mixed feelings here. Nice to see the Ministry of Health showing some interest in long Covid. But but but. We've had what, something like 2000-2500 people directly affected by Covid in NZ of whom a few...

My Polar tells me I run a lot. I think the algorithms just aren't made to account for tachycardia and they misinterpret any high heart rate as being the result of exercise. To get a heart rate of 160 a healthy person would have to run quite fast. I just need to walk slowly to the bathroom. You'd...

Forever? Oh no you won't @DMissa. What you will be doing is sort this whole mess of a disease out once and for all, and that in the very near future. That an order by the way ;). No pressure. Do you think you'll be giving a presentation on this paper at some point, preferably a somewhat...

Hypothetical questions. Note that the quote below is about a hedgehog virus, not the current, or any, human corona virus. 1) But if a hedgehog corona virus can evolve this ability is it possible the human ones could do the same? Probably not all that likely given it doesn't seem to have...

What would be the best - and safest - way to objectively demonstrate impaired functioning?

Problem is, thanks to not enough good research, we still don't have anything ready to plug straight into a research project (at least nothing I'd consider good enough). Because Jason's PEM questionnaires aren't specific enough to separate post-exertional fatigue from PEM and somehow he doesn't...

Invite them here? Reading our discussions should at least alert them to how devilishly difficult it is to ask the right questions - especially of people with permanent PEM - in order to clearly distinguish between post-exertional fatigue or plain exertion intolerance and ME-style PEM. Also...

I've only watched the first 40 minutes. Nothing much new to us but overall quite good. But also some odd bits. I googled "Polyvagal theory", just very superficially. TBH, it sounds like a form of brain retraining dressed up in academic clothes. Admittedly it would be preferable to GET or...

Interview now available here (about 14min): https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018782946/understanding-long-haul-covid19 Pretty good interview. Sounds like they have another study coming out soon(ish) where they tested pwME at baseline and during a crash, as well as one...

Not a bad start (but whose dumb idea was the CFQ?!). This bit puzzles me though. They say all but one person in the cohort of 42 had PEM but only 19 had ME (CCC). They say themselves more people would have qualified for an ME label had they used IOM or Fukuda instead of CCC. But if all but one...