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Well this seems big. Thanks again to all involved. Including everyone here. I’m going to take some time to rest and digest this all. Will catch up woth and join in all the discussions later. I’m sure there’s many long ones ahead of us!

I just saw him in the online users list here so I guess it’s pre-recorded? Or he’s multitasking. What sort of cake do robots eat? We don’t want to leave them out.

Definitely. It’s spin or be spun. It may not be pretty but it is how things often work. Important that it’s backed up but the messaging is part of things.

We can do that :) It would be nice if DecodeME shows something that interests people outside our world. Something that tickles the fancy of more smart intellectually curious people…

Which raises the question of if there’s anything else we can do to encourage, enable or support that? We can talk about it, we can produce factsheets, you can do the work you’re doing, but will that really have an impact on an authoritative medical textbook? If there are no really good...

Agree, I’d skip some of the bits in the ‘What is ME/CFS’ intro, they seem to be trying too hard to make the ‘this is a serious disease’ point without adding much. And phrases like ‘marginalised racial or gender identities’ also don’t add anything and will turn some people off. But apart from...

I’m only just digging into this in more detail and others have I think raised most of the questions that popped into my head already. But a couple of other thoughts Interesting. I wondered what differences there could be between the myoblast culture and this sort of grown muscle model, I know...

Hopefully something nice to wake up to :)

Absolutely. Huge thanks to the whole team. It feels like a big day for us all. But for the team involved in all these years of preparation and work it must be significant, especially with all that effort and no doubt a feeling of a weight of responsibility to get it right (which is clear from...

:) :emoji_popcorn:

Ah okay, thanks. I misunderstood the comment/context. I hope we get more info from them at some point, thanks for sharing what you’ve heard so far.

Ultimately people are going to have to try some things to see if they work or at least if they can shed more light on what’s going on. Some of those will likely carry risks. The question for me is not that this is done but how that is done. Is it based upon a mechanistic framework, is there...

Do they have evidence of autoantibodies in ME/CFS? If they do, that alone would seem interesting.

This was where my thoughts went immediately. If we assume both studies are sound I wondered if rather than contradicting each other could the two studies work together to help narrow down what the factor could be?

I only realised after seeing this post that these are outsourced, that may influence how his has ended up being written? edit, whoops, I think the below is in response to the original guidelines being updated not the CKS, I misunderstood as there’s no date, will leave my comment below. I also...

Or non-symptomatic? Or would that be on a spectrum of severity? I think I’ve mentioned mine was possibly triggered after ending up in hospital after a kidney infection wasn’t treated properly and went bad. I do seem to be a rarity but the descriptions of post-sepsis syndrome and ME/CFS do seem...

The trial seems to have been conducted by SetPoint who make the device, here’s their PR. Are we thinking this is a complete waste of time or perhaps having a marginal effect somewhere, maybe downstream rather than directly modifying immunology? What are the questions over the study… Would the...

I wasn’t sure where best to put this buy while looking through some audiobooks at my library I came across the book “Dirty Genes” by a Dr Ben Lynch a partial description of which is: Full description here. The author has a website and a bio which can also be found here. In short he’s a...

And you could probably argue that one of the reasons PACE was ‘successful’ was the messaging (as well as support from influential people). If we can combine good science, evidence and a good message that seems to me more likely have success than just relying on the science. I know some...

Agree. It’s amazing what is impossible until it becomes possible. And thanks for raising this example. Although I understand these points have been made it’s really helpful to have counters/examples to the common talking points those of us who are in contact with MPs and government departments...