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I wonder if there’s a way of analysing the records of those who consented as part of DecodeME, in conjunction with this data, to perhaps correct for regional variations in diagnosis or recording practices? Thinking about it that data probably holds the same problems as it depends upon a diagnosis?

Thanks @Trish Good to know. It felt like the intention was good but I got quickly lost. I say this as a child of someone with a PhD in the social sciences! I understand the need for specialist language to be specific or if describing something new, but sometimes (in all fields to be fair) it...

As soon as you say that you are excluding all severe people and probably a lot of moderate. It’s a problem many studies have had, the barriers of entry for people. And something that DecodeME (and the CureME team) did a lot of work to remove, but it was still a lot of work for a lot of patients...

Quite funny given they have accessible tools to be able to listen to the article. But then use language to make it quite inaccessible. While talking about how the perspectives of some are excluded.

Nope. Not a modern well fitted external one. I have a portable air conditioner (so a heat pump) and that is noisy! But I have to have it or I get really bad. So I use ear defenders. But it’s not great and I dream of a proper external system. I’ve previously lived in places with proper external...

Thanks @jnmaciuch :) I’ve added some resources on cytokines and a couple of non-signup/paywalled osmosis resources from youtube for earlier topics. I may play around with layout for the first couple of posts to tidy things up at some point to stop it becoming unwieldy, any recommendations welcome

Don’t we need both? Good people with good ideas and good people working hard to get the funding and wider support? Neither alone solves anything, surely it is great news we are finally seeing both come together?

That’s very true. I don’t see harm in a bit of persuasion too though. We need a good story to tell as well as having something to research. There’s a lot of diseases, a lot of people vying for funding…

Let’s be honest, the UK government spending review is coming up and this could be setting budgets for multiple years for many organisations including those that fund research. There’s also other events like the 10 year health plan and of course Delivery Plan for ME/CFS around the same time...

That seems a key point. People working together. Both researchers and charities.

The author seems to see the possibilities and that these tools obviously are and will continue to be used to help push the field forwards but also that a lot of the hyperbole is just that. Which is what I see from a lot of people to be honest, although sadly they get drowned out by loud voices...

I honestly have no idea what it may be. All of this paper looks reasonable and like the best stab we have given the limitations in diagnosis/coding though. Certainly not unreasonable or trying to inflate things as some others have. I’m interested in why you think Cornwall would be best...

Not the really accurate correlation you could do with proper data analysis but if people want a visual look, here’s ONS data from the last Census by region for over 65s https://www.ons.gov.uk/census/maps/choropleth/population/age/resident-age-3a/aged-65-years-and-over And median age...

But to do so we need to convince people, most likely politicians and policy makers, to fund the actually important scientific work. And that’s where this stuff can be useful I think, they respond to it. That said, I don’t like too much focus on diagnosis rates and certainly not on trying to...

Age would be an interesting thing to compare the data with. Shouldn’t be too difficult for someone with access to the data and some R knowledge… I also wonder about correlations with other things like poverty. There’s a breakdown here, different areas though...

Thanks both of you. Yes I’m quite used to not having things straight these days. It seems a useful thing to be comfortable with when looking at these topics, ‘it depends’ or ‘well this normally does x but can also do y’ seems very widespread. I thought tracking some core terminology may help...

A recent and interesting blog post on use of AI/ML in drug discovery https://www.science.org/content/blog-post/end-disease It also links to lost of previous pieces by the author, I’d recommend this on the silicon valley view https://www.science.org/content/blog-post/silicon-valley-sunglasses

This is something I’ve thought about. The thing is it varies so much for me. There are times I cannot even sit and being upright is torture, while others I can sit comfortably and even stand for a couple of minutes. To me that variation and the lack of oedema as Jonathan mentioned mean perhaps...

How to read a paper involving artificial intelligence (AI) Paul Dijkstra, Trisha Greenhalgh, Yosra Magdi Mekki, Jessica Morley Abstract This paper guides readers through the critical appraisal of a paper that includes the use of artificial intelligence (AI) in clinical settings for healthcare...

Thanks @jnmaciuch is there a better shorthand way of phrasing what I have? Or does it inherently lose detail? Corrections gratefully accepted! This is why I to steer clear of writing stuff and just paste resources! I find loads of things really useful in helping my understanding of papers here...