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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...

The comorbidity question is particularly difficult and I'm feeling a bit bad about my pragmatic approach here. Which is that - for now - it's detrimental to ME patients and organisations to be too closely associated with any of the contested "acronym syndromes". This isn't intended to throw...

A carefully moderated/facilitated peer support forum/group is a beautiful thing (that's why we're all here!) but things can go very wrong if you don't have the resources and the right people to see to it going right. Stating the organisation doesn't endorse anything in particular is not enough...

The more I see of placebo effects and attribution bias the less I think those stories and studies have to offer. Recovery stories claiming a causal link between this or that treatment or attitude are doing more harm than good. There's a case for carefully vetted case stories for newspaper...

Dilemma all right. Exacerbated by the fact that many patient organisations have limited resources so need to make some hard choices. Ideally different organisations make different but complementary choices so we all can piggyback off each other a bit. The worst scenario would be if everybody is...

A very mixed bag. Documenting the lived experience of severe patients is valuable and many of the issues raised by the 5 patients deserve to be documented on the public record. However, I think I would have preferred to simply read the 5 accounts as they were given. I suspect all that...

Some extracts from the interview have now been posted here: https://www.rnz.co.nz/national/programmes/ninetonoon/audio/2018782096/dr-rosamund-vallings-on-covid-long-haulers-and-cfs-me

Way out of my depth here. If somebody could translate into plain English? What to make of this: significant differences in viral loads between groups? The graphs don't help, I can't make head nor tail of of Fig2a-c. Is the viral load higher in patients or in controls? Either way, what I recall...

:rofl: Hadn't thought of that. Would save the fine, too. I can't get myself to the library these days but if any other bookworms happen to get a bit shoddy with their shelving, they didn't get the idea here.:bookworm::D