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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...

That’s key for me. And how the service is run and interacts with patients is as critical to this as what medical advice they give.

I think this is a great idea @jnmaciuch. We do ask all sorts in threads but some of these fundamental questions sometimes do feel like they don’t easily fit. Or you may feel silly asking or don’t want to derail things too much. I’ve found myself going off into other resources and going down...

Recommended by Hutan Ubiquitin proteasome pathway

Recommended by @jnmaciuch https://aklectures.com/ and their YouTube channel https://m.youtube.com/@AKLECTURES Immune system playlist https://m.youtube.com/playlist?list=PL9jo2wQj1WCNaYmBK_B81PlrX4OYLwb13

Thanks @jnmaciuch those videos look like a handy resource. And @Sasha I’m sure we’ll all discuss and help each other along the path of understanding as we always do :)

Everything… ok I shall continue with my crash course in blaggers biology then :)

Any suggestions on topics for background reading/learning for those of us not versed in this stuff who want to have the best chance of understanding what you’ll be talking about? DecodeME got me learning about DNA. This paper built on that with B cell repertoires, receptors and lifecycles as...

A correction to this has been published https://link.springer.com/article/10.1007/s00431-025-06112-w

There’s some info in a methods section in the supplementary sections (search for Stanford ME/CFS cohort) Stanford was diagnosis by specialist clinicians in the Bay Area using ICC and IOM criteria CureME they don’t mention criteria directly (but as you say we know) Stanford they say the group...

Sorry about that, I messed up the first link. Fixed now The DOI link doesn’t seem to be working, but is as quoted in the citations, so will leave it and hope it starts to work at some point…

Immunotherapies for Postural Orthostatic Tachycardia Syndrome, Other Common Autonomic Disorders and Long COVID: Current State and Future Direction Blitshteyn, S., Funez-dePagnier, G., Szombathy, A., & Hutchinson, M Abstract Postural orthostatic tachycardia syndrome (POTS), neurocardiogenic...

I think Mario was referring to o3 reasoning, one of the newer models from OpenAI.

A couple of other bits I found useful: HEAL stands for “hierarchical estimate from agnostic learning” (I found the older paper useful in understanding the background to this updated framework) Video on the STRING database I also have some AI generated summaries of the papers and comparisons of...