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What about if there was something that gave an extra susceptibility to whatever upstream effect there was. Like something which meant it was more likely for there to be an increase in D2 receptor density? Not that it looks like that’s the case for VWDE which seems more structural, maybe it could...

National trial for an under supported and often misunderstood condition, great! Oh….

There was a bit more in the full post, but probably better if @forestglip answers Ohhhh. Juicy! Nothing like a bit of premature over interpretation and speculation:) I remember mention of pituitary expression in the thread on the PRIME workshop, but the gene looks intriguing. VWDE on...

I don’t want to speak on behalf of @forestglip but does this answer your question @chillier ?

Oh yes! It is an interesting projection isn’t it. No wonder it was hot in Portsmouth and Oxford this year! Edit: i think maybe those are all supposed to point into the UK while some of the others (Florida, Australia) are correctly pointing outwards to their locations? It is confusing though

As its been referenced here I’ve posted a link to the CureME email in the updates thread so others can read it first hand including the mentions of this paper and the HHV6 project.

Latest update from the CureME team, can be read here and covers a range of topics on current projects, recent publications and sample usage http://eepurl.com/QShnc4nywr

Luck, chance, underlying genetic predisposition, something unknown. There’s lots of possibilities. Plenty of young people who rest and pace become severe.

Nobody has said that. To me it’s an unhelpful misinterpretation or misrepresentation of what has been said. I think it’s also misinterpretation of the results to make the claims you have. I don’t know what the studies tell us about the causes but I can see that the papers are not saying that...

Ah. Yeah, that doesn’t seem a convincing conclusion. I don’t know what it would mean if they exist. It’s not an area I’ve paid much attention to and have little understanding of. I’ve been doing s bit more reading recently but it’s pretty basic stuff. But some sort of subtle changes caused...

Does it need to be causal though? I can see how they could exist as a downstream effect of other things and so still interesting/useful.

We have no evidence of ongoing viral activity being a cause of ME/CFS despite loads of attempts to find it and antivirals have afaik failed to help at all. I’m really interested in the HHV-6 study and was an early participant but I’m not expecting it to find that the reason I am severe is...

Would you envision these changes being transitory @jnmaciuch or would it be a ‘it depends’ situation? I guess there’s different timescales involved depending upon the causes and effects here and maybe that could feed in to some of the confusion?

I share a lot of the sentiments @V.R.T. It’s good they’re looking to put some money towards good research. Beyond the admirable funding of things like CureME/the Biobank it’s been pretty poor. It’s often looked to me like a clear separation between the Ramsay funding and the rest of the MEAs...

I think it’s probably little to do with us doing anything right or wrong a lot of the time. They’re busy, sometimes things align. As much luck/chance as anything. Just really pleased you keep on trying and that you got a positive response here :) I hope so too. You’d expect someone on their...

Yep. I obviously don’t have your knack :)

Imagine going from the byword for good evidence based reviews and practice and trusted worldwide to the situation they find themselves in now. No doubt the organisation blames others and factors outside of their control. If only they would face up to the problems and these unhelpful beliefs...

In the same ballpark one of the avenues I went down early on and have heard others look to rule out was Addison's_disease, possibly supported by a local doc’s interest in cortisol

Nice work getting in contact. And agree if they can listen, learn and adapt it’s definitely worthwhile. This was an area I thought they may be interested in but haven’t heard anything...

That’s a shame. Hopefully we’ll here more later and video/audio or summaries will be available for those unable to follow live. Although the main thing here is that some of the right people seem to be getting together and sharing interesting work and discussions.