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To revisit the discussion of pathways, triggers, complexity, and concerns over disease categorisation I thought I’d give an example from software development. In a simple software bug, someone performing certain steps will cause a particular problem to occur. This is reliable, repeatable. The...

I’m sure we all look forward to hearing more on your thoughts! And I really like the reminder that nature finds ways of doing things, which we often miss trying to look for logical or efficient paths or patterns. I like Hutan’s idea of people with higher levels being more ‘protected’. I also...

I wondered if the hand grip strength results seen in ME/CFS had been repeated for LC, a quick search turned up this https://www.nature.com/articles/s41598-024-52401-z

Thanks that is interesting. So a sort of fingerprint and then that varies with various diseases? interesting thoughts on evolutionary selection over time and up regulation too.

Maybe going a bit off topic but I’ve been interested in how significant my response was to the covid-19 vaccines and often wondered if there is something to be learned here. Largely because of just the way I used to work troubleshooting problems in large complex computer systems. If you have...

Thank you @Yann04 and @Wyva for sharing your memories, and the link! It looks interesting, I'll listen later. Some questions/thoughts. I'm not specifically directing that anyone or even expecting answers! Why would here be a skew towards IGHV3-30 gene usage? My understanding is VDJ...

One thing I’ve particularly enjoyed is papers which I’ve gone off and learned about the background and science involved in more detail. It can take many months. Picking up bits and revisiting and re-listening to papers but it’s really interesting. I’m just starting to understand bits about B...

Time for some more wild conjecture from someone with no medical training and little understanding… Maybe all people with a susceptibility to ME/CFS have the imbalance (maybe not the right word) seen in mild/moderate and something about severe causes things to become balanced again? Could there...

I’ll try and do the more formal structure as this looks useful, but it came to me that PEM for me is perhaps described best more poetically… please feel free to move if better elsewhere I know the journey But I don’t know how long it will take Or exactly what I’ll see along the way

Having it public would be a really useful resource

Agree, those with the biggest financial incentives to do the right thing and follow the science and get people vaccinated (amongst loads of other preventive healthcare measures) are health insurers and drug companies. So they will.

It would be good to get the thoughts of someone a bit more familiar with this sort of study. The numbers look quite low for getting much useful from GWAS from what I’ve read around DecodeME. But they’ve used CDC diagnostic codes for diseases, and MyCode looks like a proper healthcare system...

Maybe for mild/moderate people the compensatory mechanism for whatever is going on elsewhere is working while in severe it’s not or has stopped or paused for some reason. Or it may not even be a distinction as clear as severity but just for different people with ME/CFS at different times or in...

I’d hoped any drug trials we saw in the UK would have been done by people who cared about or at least understood ME/CFS. This all looks very generic and boilerplate.

Dr Jacqueline Cliff Has been doing the HHV-6 reactivation study which is ongoing https://www.brunel.ac.uk/research/projects/reactivation-of-herpesviruses-in-chronic-fatigue-syndrome

Yes, limited space but recording available after. This from an email I received

To me uncertainty and partial information and things we as patients need to find ways to be comfortable with. If there’s anything we know about ME/CFS it is that it isn’t simple. I’m hugely hopeful about upcoming science, but expect that in even the most enlightening studies we’ll only uncover...

Presumably makes them feel a bit woolly?

Absolutely. The more I learn about biology the more you can see it using fundamental chemistry and physics, not just the ‘simple’ stuff but including crazy quantum and probabilistic stuff. Amazing stuff. So much more for us to learn and (try to) understand.

The way I suppose I would probably think about it is a complex circuit with lots of different electrical pathways/tracks and switches and components. Or maybe even just the electrical system in a house. And depending upon which switches are enabled different lights switch on. And sometimes you...