Congratulations! So lovely to see you pop up on my feed with such fantastic news x

Thought should leave this here

journals.physiology.org/doi/full/10....

Randomised to get 5-10mg dapagliflozin. Can't see in abstract or press releases how the dose was assigned. Any idea @hswapnil.bsky.social @jamiekwillows.bsky.social

@jamiekwillows.bsky.social I was looking through the UKKA guidelines (18 oct 21) for this but couldn't find it. Just seen its in the 2023 update! But not that summary figure. Where is that one?

CAR-T therapy. Again in trials currently

Perhaps we could design investigations template for ME/CFS patients with polyuria....this should be part of standard care so should not be classified as research. First step would be detailed fluid balance chart to understand patterns. Alongside autonomic diary if pts well enough. Focus group?

@dr-kevinlee.com And endocrinologists!

Its v complicated! Yes but hypoK not all renal wasting. Managed to ⬇️ that. Redistribution in setting of hypovolaemia & high lactate.

Renal tubular and mitochondrial genetic screen negative. Working diagnosis ME/CFS with secondary tubular dysfunction

pmc.ncbi.nlm.nih.gov/articles/PMC....

It takes time though and does need services with MDT input..... trying to understand an individuals physiology for purposes of supportive management should not stop once have diagnosis. Similarly to understanding phenotypes of PoTS to direct therapy - it adds to conservative and self management too

How can it be acceptable for hospitals to say no. Need to have guideline of what tests are helpful, how to interpret & what treatment to offer. You can understand why someone who is polyuric may struggle with orthostatic intolerance,⬇️cerebral perfusion etc. Once have angle to work up....

Would be really interesting to study this subgroup. Its so hard since doesn't fit neat box and when issues in multiple pathways hard to work out. Once you start doing Ix can pick apart. And then target. Seeing whether common patterns would be v interesting. We really do need specialist centres

Have you managed to do paired serum & urine osmolarities and electrolytes?

So awful most these pts are not investigated or taken seriously. Really needs early intervention since seems to develop into vicious cycle. Need to try & maintain hydrated state to manage symptoms which is v difficult in the face of a renal concentrating defect. How many of your pts are polyuric?

Renal physiology so complicated at the best of times! Polyuria of any cause can cause loss of gradient in the kidney (medullary washout) with reduced response to ADH. Reports of reduced production too. Found few papers suggesting lactate may cause direct tubular injury.

I've found this article very helpful before and can see it is also about Patrick.

www.healthrising.org/blog/2023/12...

Hope was resetting gradient step would help and can then maintain K and may recover. Chronic low K can also downregulate aquaporins. Similarities to lithium.

pmc.ncbi.nlm.nih.gov/articles/PMC...

iv fluids actually reduce urine output....