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Ivan Watson (the first commenter in that screenshot) has been sharing his personal theories about ME in ME facebook groups since well before this CCI thing came out. Before that, he was telling everyone that ME is caused by candida. And various other things. Jen has always been very clear that...

This is a great example of "garbage in, garbage out", as my old statistics teacher would say. They've taken 3 different conditions, and run a factor analysis on reported "symptoms". In my opinion this does not show anything useful. It's just a bit of playing with a statistics program. You...

That's a ludicrously poor measure. I'd imagine that waking still tired at least once weekly would be reported by the majority of teenagers, university students, and people working long hours.

I think this thread is rather relevant here. https://s4me.info/threads/a-thought-experiment-how-to-create-a-syndrome.10594/

That is SUCH a good point!

What approach is going to be taken by the upcoming GWAS for ME? 23andme data is not guaranteed to be accurate... and it doesn't cover a lot of genes.

Y'know, that's pretty similar to things that Simon Wessely has said about ME...

Yeah, a similar (and crappy) article could easily be written about the ME/CFS community.

This 'disability pride' & identity sort of stuff is common amongst disabled and chronically ill people in my generation (I was born in the 90s). The reason behind it is they want to push back against the idea that disabled/sick bodies are worth less than able/healthy bodies. They don't want to...

Do you mean a p value? If not, what is a q value??

Is this Esther Crawley's doing?

What is MCID?

Sigh...

Scares me a little. Next thing will the DWP be putting trackers on disabled benefits claimants to monitor their activity and then saying "you walked 200m today so we're taking away your benefits as you're clearly not disabled". Or BPS fatigue clinics tracking whether patients are doing...

@RDP

I assumed it's just to do with energy being used on digestion and so less energy for other things?

I think this explanation doesn't work with him because my PEM is not something that can be proved to him, it's just what I report. Also I suspect he cares more about what the house looks like than about my quality of life, anyway.

This is a very good idea, thanks

And that is a COMPLETELY different thing. Jen Brea and Per Fink very clearly have completely different aims.

Yeah but that doesn't mean that hEDS and chronic Lyme are not in themselves valid diagnoses. Just because some people over-diagnose them.