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When I was digging around this before I wondered about something not being as efficient around cleanup meaning the response goes on for longer and potentially amplifies more than normal. Ubiquitin proteasome area. Not sure we’ve really got any evidence for this though. But I still like your...

Interesting, thanks @Kitty Maybe that is more the case in some areas than others? Maybe it was partially age, being a younger otherwise fit and healthy looking person? Maybe it was my own pride and prejudice showing! It certainly felt like I got a lot of looks. Maybe they weren’t judging but...

Thanks @ScoutB I wonder how much is the entire training and system of healthcare is about delivering treatments. There’s possibly less about what is a significant part of it which is not being able to. There is a wider human nature aspect of saying ‘I don’t know’ being hard for many/all of...

Was definitely something I was self conscious of when first ill and less severe, and I would probably have benefited from using a chair more often. Even now, being severe and v rarely getting the opportunity, the fact I can when at my best briefly stand and can move my legs or walk a few steps...

How about more predisposition rather than presupposition? So if biological systems ABCD and E somehow involved in the disease state and different people have different susceptibilities within these systems caused by small genetic differences and it is those which we are seeing in the results of...

There was also a few other genes (as well as FBXL4) from PrecisionLife’s combinatorial analysis around metabolism, more implicating lipid and cell membrane systems than clearly saying mitochondria I think though (my clustering results here too). Having more knowledgeable and experienced minds...

The link appears to have become garbled in the matter transference process, here it is for others

Only just catching up with these posts but please don’t apologise. It’s great to have another researcher here discussing their work and wider aspects of ME/CFS. The more the better!

Absolutely. Given we have prevention of future death reports, it seems like banging the drum to make hospitals at least safe for severe/v-severe patients is a clear obvious focus.

You are, in this paragraph, repeating what I see as a the problem. You do not blame patients directly but you do state that the reason to take action is because patients have been excluded from physician care and that has been contributed to by the actions of patients. My counter is this is an...

Here’s the researcher access page for DecodeME, it seems like the best possible, ready made, validated data set. https://institute-genetics-cancer.ed.ac.uk/decodeme-the-worlds-largest-mecfs-study/researcher-access Some data (like the summary information from the GWAS) is also freely available...

Have you got a complete list of the genes you are most interested in @mariovitali ? Apologies if you’ve already posted, thought it easier to ask the expert than search! And to play devil’s advocate, this is a view of successes, do we have a view of failures or at least of not yet confirmed...

Yes, I think it’s just that this is all this paper shows us. It’s researchers being understandably cautious about wider speculation. Or at least drawing a distinction between speculation and evidence.

Is this an entirely unique pathway for B cells, so is your expectation that this would only be seen in antigen+cytokine triggered b-cells? Or are the same pathways/mechanisms present elsewhere in different cell groups, perhaps used a bit differently as often seems to be the way! Wikipedia also...

Aha! Thanks for the clear explanation @jnmaciuch , very much appreciated.

Can you elaborate? I don’t understand what this means (or how it would happen or manifest) so my head was very much in the ‘okay, lipids, mitochondria, phospholipid bilayer’ space.

From the DecodeME candidate genes for PRDX6 (genecards link) This would support the idea of ‘stiff’ membranes from lipid build up wouldn’t it? Here’s the papers referenced https://www.sciencedirect.com/science/article/abs/pii/S0891584905000821...

Agreed. To me the question is how we approach that and the justification and arguments we use to do so. Maybe we can focus on the message of ‘this makes communicating the good new scientific discoveries (which yiu as a charity are supporting) harder’? Some of the other more grassroots patient...

The anecdotes and justification used for the action needed which keeps on accepting a false premise posited by medial professionals for their own failings and putting blame on patients. I’m sure it’s unintentional but that is how it can be perceived and it keeps on being repeated. I don’t...

On the POTS thing I officially have a POTS diagnosis, from one of the questionable ‘specialist cfs/me’ services and doctors, although on paper supported by a cardiology department. But I don’t think I have POTS, I don’t tend to say I do. But do have OI and something weird cardiovascular… Maybe...