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I’ve been through the key structural elements part of the document and I think it’s good, thank you @Jonathan Edwards it certainly could describe what we want. It could though describe something less than what we want. Some specifics.I want to be able to regularly and reliably get vaccinations...

Yes. Yes. Yes. I just want to get support in a way that doesn’t make me worse. My problem is not that the NHS isn’t making me better it’s that interactions with the NHS have been and continue to be things that make me worse! I largely mean support for non-ME/CFS healthcare needs to be...

Agree. In my experience and what I’ve seen from other conditions those best able to help people navigate the system, remove obstacles, etc. are specialist nurses. Continuity is key for me too. Being able to build up a relationship, understanding and trust is vital.

LocusZoom is failing to load for me for the locations of tryptase alpha, beta, delta and gamma. Not sure what the issue is, would need to look at the underlying data or try some manual locations I expect. Will try to do so later unless someone else gets time to prod around. There’s not much...

*looks up to the cliff, tries to follow where @V.R.T. Is pointing, runs over and picks up another pebble* “this one?”

Indeed. My general approach is like someone flailing around on a beach picking up pebbles and holding them up to passers-by and saying, in a hopeful tone, ‘is this interesting?’ I think there are lots of interesting pebbles :) If they tell us anything., who knows. Maybe one day they will.

I have been doing more digging and speculating… So MCTS1 seems to sometimes work in concert with E2F1. E2F1 is in the area of this peak on LocusZoom for DecodeME which is below the significance threshold but there seems like there could be something going on in this region (you may need to...

Thanks so much @Andy that’s great to hear!

Thanks @jnmaciuch useful to have your expertise on my wild speculation.

Presumably we’ll find out more about any alleles once the X and Y results from DecodeME are released, does anyone know how things are looking on that front? @Andy perhaps?

I just noticed that revisiting this paper, my JAK-STAT pathway senses started tingling. So elevated MCTS1 leading to increased JAK2 protein so hypersensitive JAK-STAT? Maybe something here with the interleukins and complement to to keep a bit of an IFN loop going too?

Interesting news. Seems pretty wild that they’ve approved it after only testing safety not efficacy. I know levodopa is the main PD ‘treatment’ and it seems dopamine producing neurons do decay, but there’s a lot of questions still on what the mechanisms of PD are AFAIK. Maybe we’ll find more...

The UCL study talked about a fair bit recently is using the same platform as this paper and is also focussed on on immune/neurological function so maybe it can tell us more, from their funding document

It may be worth mentioning that they’re using the same SomaScan proteomics platform as the Hoel, Fluge and Mella paper. I hope the Imperial team are aware of and can try to reproduce and build upon the existing findings.

I was going to ask those more knowledgeable and experienced in this field (like @DMissa ) what the chances are of someone else looking at ME/CFS proteomics would be of reproducing this. It looks like the Rosetta Stone study is using the same kit at least, I wonder if they're aware of this paper...

Of course :) and thank you!

Yes, it does sound to me very like what happens when a minister is given the usual placeholder answer by a department official and says ‘no, try again’.

Agree. It’s short term thinking. We want to get people back to work but won’t do what is needed to enable that is an abdication of responsible policy making.

Even the video here is an odd mix, in that it talks of some quite severe symptoms and yet also the people are up to interviews, out in the world, walking around, in the garden in a wheelchair. Many would love to do those things! There seems to be a lack of representation of severe (and...

I wonder if it’s possible to make the case for ‘a service like this, but without the problems’ as a way of selling it to the DHSC? They may be more willing to act if they’re seen as stepping in to improve things than just scolded for their failure?