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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.

Looks like they’re sending out emails (including a pdf) to people previously contributed feedback

Thanks for the live-blogging @Jonathan Edwards we’ll make an influencer of you in no time ;) *liked and subscribed*

This has also been covered by @forestglip in the writeup (Referring to the findings from Sharpe et al.1996)

Do people think it could feel or be experienced very differently although be a similar underlying mechanism then? Or that combination of factors I mentioned before to? What some of us seem to be describing is an outsized bodily response to what some may characterise as a normal infection...

Which raises the question, what sort of group/subgroup sizes would we need to be able to distinguish this?

Yeah that’s why I’m so interested in if there’s a correlation with severity and response. I want to see nice graphs of both dose and severity responses. That information could be really useful. Good point about there potentially being other, maybe even better ways of determining that if we can...

I think @Utsikt is just suggesting start low and ramp up as opposed to start high and ramp down? Which gets you to the same place, an understanding of dose response and minimum effective dose.

@Felis Catus describes something similar I think. I’ll try and write something more over the next few days and send it to you.

Thanks @Jonathan Edwards that’s really useful. Even talking about it here with something comparatively innocuous feels like quite a responsibility. I don’t envy anyone having to weigh some of these factors up. I’m really torn on this. On the one hand I want clear, indisputable evidence. I want...

The infection that triggered everything for me was kidney stones, a kidney infection that wasn’t handled well by people and got out of hand and sepsis that was thankfully handled well. And I was so out of it in that that I couldn’t stand and was being wheeled around. And while recovering wanted...

What I began to experience with ME/CFS in terms of OI was unlike anything I’ve experienced before with any sort of illness or infection apart from perhaps myocarditis. I used feel tired and have a desire to lie down with illness/infections but not anything close to the level of discomfort and...

Ultimately in Asimov’s writing this wasn’t solved until sometime after resource allocation was taken over by the robots… Humans have too many problems of self interest and so on. It may not be the solution. Maybe there isn’t one. But perhaps on the path to wherever we’re going we will need more...