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There’s considerable confusion in other patient groups about GWAS. Understandably so, it is all rather complicated. I see people interpreting the results as there definitely being something wrong with the 8 highlighted genes. Some who have dna data for themselves are finding they’re not having...

Idly googling around for links between HFE and immunity and this review came up. Can’t say I understand much of it so obviously unable to judge the quality but it does seem clear that HFE’s role is very much not limited to iron homeostasis “The hemochromatosis protein HFE 20 years later: An...

Seeing HFE pop up is intriguing. I’ve long wondered if my haemochromatosis and my ME are mutually reinforcing each other in some unhelpful way (beyond the fact that haemochromatosis treatment plus having to travel for it is a sure-fire way of ending up with PEM) Clearly, simple iron levels by...

We start with the genetic signal for ME/CFS. Basically, candidate genes are nearby, but which are playing a part in causing ME? Thanks. I think I get the general idea now of how you get from 43 candidate genes to 29 priority candidates to 8 ‘headline’ candidates One remaining question, since...

Thanks for trying but it’s still gobbledegook to me. They all sound like candidate genes to me, not just the 8 highlighted, so what makes those 8 special? And how much attention should we pay the others on the list Chris shared? Maybe someone else can dumb it down further? Mind you, my brain is...

Dumb question time: what’s the difference between a candidate gene, like the ones on this list, and the 8 ‘headline’ genes, in very simple terms? Thanks

Agree. It would be better if authors, here as in most other studies, just skipped the whole general background stuff which a) almost always consists of a mix of poorly evidenced received wisdom and the patently obvious e.g. ME is nasty to have, and b) is unnecessary. Why not just limit the...

The Conversation: AI will soon be able to audit all published research – what will that mean for public trust in science?

International with qualifications Source: Emerge

The PEM sheet looks good. I didn’t notice any major issues though I’m a bit too foggy right now to be reliably language-switching so don’t take my word for it. A couple of things to consider: In the title there’s only ‘PEM’ but in the text it’s the French version MPE, maybe change the title to...

Pacing up and graded activity are essentially gentler forms of GET. Some details may vary - notably there's more flexibility than in hardcore GET - but the key point is that for all three the goal is to gradually increase activity. That’s in contrast to pacing as recommended for ME where an...

Welcome @trenteliason, great to see you here and engage. You come across as someone who wants to get this right and is sensitive to the issues Speaking of sensitive, I’ve listened to a couple of the TikTok accounts and they highlight an extremely sensitive and tricky issue to navigate: the...

And a Substack (haven’t read anything yet) https://stephenfortuna.substack.com/

Someone pointed me to TikTok where, believe it or not, I’d never ventured before. Features pwME recounting their personal stories www.tiktok.com/@what.doesnt.kill.u.mov

Is there a pattern emerging here? Fairly recently Per Fink made a very odd comment about allegedly wealthy ME charities throwing their weight about. Unfortunately I can’t recall where I read it, it may have been in some Danish language media, and I can’t find it again As an aside, during my...

The film maker’s other work can be seen here and here. I didn’t look at much (too much movement) but the little I saw looked very competent and professional This quote is a little concerning Let’s hope they focus mostly on people’s experience of ME rather than more or less speculative hypotheses

I haven’t read the paper but the basic premise that different framing gets different answers has long been known, and sometimes exploited, by any pollster worth their salt

Iceland and the Faroes have gene databases linked to some health records. Don’t know if that includes anything relevant to ME. The Icelandic one is large and run by a private company, the Faroese appears to be publicly funded but is rather small. Note the name of the Icelandic one

My impression is that slow reaction time may be more prevalent than the level of discussion about it suggests because unless you regularly do things where reaction time is critical, like driving or gaming, it’s not a major issue day to day, compared to all the other symptoms We’ve discussed...

I’ve only been able to read a minuscule number of posts in this thread. At the risk of repeating points already made I want to add my voice to those advocating for strategies involving deflect and return to own talking points rather than wasting time trying to defend any it’s not mental/psych...