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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...

Some useful terminology Names for T helper cells CD4, CD4+ or CD4-positive, Th, helper T cell Names for cytotoxic T cells CD8, CD8+ or CD8-positive, Tc, cytotoxic T lymphocyte, CTL, T-killer cell, cytolytic T cell, killer T cell (not to be confused with natural killer/NK cells or natural...

Afferent and efferent nerves? What on earth are those I asked myself. Some text and video resources to help understand the basics of nerves, the central and peripheral nervous systems and some deeper resources for the adventurous Khan Academy Nervous system introduction (a series of short...

I wonder if there’s possibility of using something along the lines of https://www.opensafely.org/ ? Although you wouldn’t be able to make changes to update records there may be a way to analyse the data to get a better idea of numbers

Yes, companies routinely use LLMs and other AI/ML and data privacy is maintained. It’s not a technical problem but a policy and public perception one. I don’t think it need be a privacy issue but because of the lack of trust there would be a privacy issue, if that makes sense? Getting reliable...

ORCHESTRA Delphi consensus: diagnostic and therapeutic management of Post-COVID-19 condition in vulnerable populations Elisa Gentilotti, Lorenzo Maria Canziani, Maria Giulia Caponcello, Anna Maria Azzini, Alessia Savoldi, Pasquale De Nardo, Zaira R. Palacios-Baena, Beatrice Tazza, Natascia...

Yes, I very much saw my role as a librarian rather than an author here, I don’t have the knowledge for much else! Cutting and pasting useful snippets and organising them in one place to be easily referred to. Some key terms, acronyms and definitions or concepts which can be built up over time...

Thanks @Jonathan Edwards that’s useful. They definitely confuse me! And I suspect many others, so we may just get a lot more confusion rather than much useful information.

I was thinking of doing a members survey on neuropathy but have no idea on how to phrase it or if it would be worthwhile. I know I have some sensory neuropathy, early in my illness a doc did a test where he moved my big toes and I could’t feel him doing so. And I do have odd loss of sensation...

I’m happy to give a bit of curation/library management a go. I have been looking for a way to contribute that isn’t load bearing and I can dip in and out of and this could work.

Thanks Andy.

That’s my understanding. It’s not a replication but looking for genetic correlations between ME/CFS and other diseases. They’re saying “okay here are our identified 115 genes, do these pop up for other diseases too”. However if the genes are relevant and the people in the (Leeds) UK Biobank...

Will the underlying dataset from DecodeME have rare variants and other data used here? Or is that not coming until SequenceME? Presumably if it is present replication would be fairly straightforward with access to the model (a shame it hasn’t been made available)? Or even a wider attempt to...

Physical Therapy Management of Postural Orthostatic Tachycardia Syndrome Using a Pacing-Forward Clinical Approach: A Case Report Powers CD, Miranda NA, Davenport TE Abstract Objective: Postural Orthostatic Tachycardia Syndrome (POTS) is a form of autonomic dysfunction that affects hemodynamic...