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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...

I did my own versions of a lot of what visible does earlier in my ME/CFS journey (logging activity, tracking steps, heart rate, hrv, etc) but stopped. What I learned was useful but as an ongoing thing it wasn’t. I also have some concerns over visible themselves. These sort of companies usually...

It’s very common for all sorts to go out on the last day(s) before recess. Not a good practice, but a common one.

The name may be off putting but such is marketing. The technology looks like it could be interesting and has apparently shown promising results An article on a phase 3 trial for an Alzheimer’s drug https://pharmaphorum.com/news/roche-preps-phase-3-brainshuttle-alzheimers-drug And relevant...

One aspect I’ve wondered about is simple awareness. Are there are ways of us getting the message out about DeocdeME to medical schools/universities (I have a teaching hospital, medical school and universities locally to me for instance). Not sure how well this would be received and it’s not the...

I seem to remember one trial run over recent years which showed Eliza performed better than modern (this was a few years ago) LLMs in fooling people that it was human. Perhaps that was the start of some of the extra sycophancy of more recent models styles?

It is really difficult to understand the motivations, for anyone else, but specifically in this case. We can guess but given the structures and politics probably impossible to know, but it does seem clear something is blocking things here from what so many say. I wonder if things will shift if...

The PTerminator? Can we add in some robotic CBT… RoboCog?