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As I understand it crossover means placebo and drug groups switch round after the initial phase right? So are they saying this will be the case for phase 3 or are they using it in a different sense here?

So here is a sickness behaviour that resolved. And in some people it seems to get stuck on like ME does.

My point is that there is very clearly a phenomenon of post infectious OI with tachycardia on standing, and maybe POTS isn't a good name for it, and maybe the research and practice around it can be dodgy but there is absolutely a real condition that people suffer from.

The evidence is in the testimony of people who report massive rises in heart rate on standing, dizzyness, tacycardia etc etc after a covid infection that is disabling and chronic. Yes maybe tilt tables and over 30bpm heart rate rise might not be the best way to diagnose, yes maybe a lot of...

I hope there is. I would love to be able to go to gatherings and play/attend gigs again if there was a really effective treatment. In some ways being functional but still shut out of the world would feel like a much more bearable but still quite rubbish sort of purgatory. I have also been...

This is a very important point. There is a RECOVER long covid IVIG trial but frustratingly it's for POTS. And i think another arm of that trial is exercise... But yeah IVIG and similar might be a worthwhile thing in the short term if it can keep some people out of a severe state. Care costs and...

Unless it resolves in the same way it sometimes (but rarely) seems to later in the course of illness. Maybe whatever lever or widget is holding the dysfunctional signalling loop open, as in you and @jnmaciuch's metaphor from a couple of weeks ago (which I may be misremembering), spontaneously...

Doesnt that depend somewhat on whether the mechinism behind short term resolving Post Viral Fatigue/ Long Covid with PEM is the same as the one behind ME/CFS? Rather than ME/CFS is some other signalling loop or whatever happening on top of that initial post viral illness, or a totally...

Ironically without a BPS approach I likely never would have gotten sick enough to consider assisted suicide.

Is this last part true? I mean in real terms of course it is, and maybe my mind has been warped by the slow pace of medical research, but surely existing drugs could go straight to a phase 3 trial if we gain from DecodeME etc evidence that they are likely to work? And if that were to happen it...

Notable that they do not mention any of the clinical treatment trials that Lipkin claimed they were close to when news of the funding pull broke, and that are mentioned several times elsewhere in this text, in their five year plan... Although perhaps they were thinking they would have strong...

There are inconsistent reports of significant improvement following a Stellate Ganglion nerve block - would that fit with what you are saying here?

I suppose what I'm getting at is, if your speculation is correct, what is it about pwME who have a longer time sick that might make it harder for them to be treated than pwME who have been sick a short time? If there is no detectable damage, as you have emphasised before? Some change in immune...

Thanks for the prompt response. I am still a little unclear on the exact implications of what you say. Are you saying that it may be hard work to find effective treatment for those of us who have been sick more than a couple of years? Or are you saying that it may be hard to treat the longer...

Could I possibly draw your attention back to this message? It would be good to have some clarity on what was meant here. Thanks.

To be clear, are you talking about early and late in terms of the time course of the disease or in terms of the chain of causality i.e. early being closer to the upstream mechanisms that cause it? Oh and would this reversal be necessary for an effective treatment or just for a cure that turns...

I've said this elsewhere on here but yes, I think the prodromal onset applies to me, if it is a thing. I have not felt healthy or well since around my 19th birthday, with all sorts of symptoms like DPDR and panic attacks and insomnia, but did not experience noticable PEM until shortly after my...

This is definitely the vibe today! Are we looking at tomorrow now or could it go up any time?

Yes I can certainly see that being the case.

At what point, or what threshold of evidence, do you suspect they will stop rolling their eyes?