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I was listening to Terry Pratchett’s Truckers today and this quote with seemed appropriate to some of the discussion here They’re fun children’s books about Nomes, little people in a human world, but also like so much Pratchett come with a message. As Wikipedia says “The main theme in the...

Glad you found it useful. It’s all a bit beyond me to be honest, but I find it interesting. It sounds as if this is a process for inferring information on most but perhaps not all HLA genes? So there’s some room for error and it may not be complete. I guess we’d need SequenceME for that. This...

Great, thanks @Jonathan Edwards. I suppose that’s what this paper was doing too. It can take a while for the teeth in the cogs to click into place for me but it’s nice when they do. When learning about the MHC I was interested that Class II crop up in endothelial cells, given the issues...

After a comment from Simon in the thread on Fluge and Mella about DecodeME looking at HLA I dug out the DecodeME Data Analysis plan (link) which says this This is a reference to the methods in the above paper. Relevant section copied below And from the methods

The UK Biobank resource with deep phenotyping and genomic data Clare Bycroft, Colin Freeman, Desislava Petkova, Gavin Band, Lloyd T. Elliott, Kevin Sharp, Allan Motyer, Damjan Vukcevic, Olivier Delaneau, Jared O’Connell, Adrian Cortes, Samantha Welsh, Alan Young, Mark Effingham, Gil McVean...

Oh this is exciting! DecodeMe is looking at SNPs, these are if I understand common (as opposed to rare) variations of single nucleotides within the DNA. So it’s looking for patterns of common variants within the population of people with ME. I guess since the MHC/HLA (the bit of the DNA that...

Agree. To me there is a relatively small group of people who have actively caused harm and been a barrier for years. Most have been indifferent and lacking in knowledge or awareness. And while it would be lovely to see recognition and some justice around the actions of the former group I don’t...

Sure, I understand this. I see it all as part of the environment though. And I’ve seen both the lack of ability to effect change that MPs have but also the significant change if you get the right person at the right time. Let’s see. IMHO it’s worth a try. That’s all we can do.

But we do. Our politicians still decide on and change the funding and remits. Even on what happens in education which feeds into research. We have big spending reviews and long term plans for the NHS and ME/CFS coming up. I see every reason to be pushing for our cause. Yes, it could well be. I...

I’d say HIV/AIDS is a great example of what I’ve been trying to say. It took great discoveries to change things but also great amounts of lobbying and pressure by a vocal community. People worked together, learned from each other. Treatments and different drug combinations took time and effort...

For a few months when I was first getting ill I used stools a lot. I could walk around the house or when out for short distances, but found half a dozen steps then a sit down, then half a dozen more, worked best. Thankfully flexibility/agility wasn’t an issue but getting up/down off the floor...

Cats. They’ll happily leave an air conditioned room to find someone to sit on, no matter how hot it is. If they can complain at that person about the weather, all the better.

To expand a bit, the funding bodies have their funding allocated by politicians, their frameworks and remits set by them too. Problems there have been highlighted and influence them involves others outside those bodies. We’ve also discussed the need for clinical changes, these can be influenced...

Because of who gives the money to and sets up the funding bodies, who sits on them and advises them, because of all the other points we’ve talked about in this thread…

So in summary…is the the message to send Don’t waste money on the current clinics in the NHS, they’re crap Don’t waste time building big funding pipelines, they’re crap But be ready to get behind good science when it comes Because I agree with all that. But feel we need to work on the third...

I wonder if we can flip this around from thinking about what structures need to be built. So here’s my question What obstacles need to be removed to enable high quality research into ME/CFS in the UK? Or even if we wanted to sell it to politicians.. What obstacles need to be removed to enable...

This is the thing that fascinates me about this. I used to live in Singapore. 25-35 and very high dew point all the time. The country depends upon air con but didn’t live in it, I acclimatised. I spent time in places without it. I used to do long hikes, run even (not in the middle of the day)...

Using machine learning involving diagnoses and medications as a risk prediction tool for post-acute sequelae of COVID-19 (PASC) in primary care Seika Lee, Marta A. Kisiel, Pia Lindberg, Åsa M. Wheelock, Anna Olofsson, Julia Eriksson, Judith Bruchfeld, Michael Runold, Lars Wahlström, Andrei...

Thanks @Jonathan Edwards that’s really useful insight. And yes I meant all the surrounding supporting stuff rather than lab resources. I’m coming at this in a sense of, the people and processes and all that side of things are hard and time consuming so why not get prepared there. We want to have...

Agree. But equally (as I think I said before) we need to prepare, to ensure we are ready to do trials when we have the mechanisms. It is possible to do some things in parallel. If we only think about these things after we have the answers we will face potentially needless and long delays. I...