Could POTS (ME?) be bi-modal: with both post-exertional malaise and under-exertional malaise?

SNT Gatchaman

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We're currently talking about whether ME/CFS is a blood disorder.

On the back of the new long COVID micro-clot finding and noting changes over time in myself, I'd like to raise a separate discussion. I'm (very) slowly improving and am probably at the milder end of moderate currently (long may this continue). My observations and thinking are in this context, probably relevant only to the milder and/or more recent patient group.

It's been noted that POTS patients are often worse in the morning and then improve over the day, even describing being at their best just before bed-time. I experience this. This could relate simply to overnight dehydration and autonomic changes of course. POTS and ME patients also have "unrefreshing sleep" as a hallmark feature.

I've also noted a paradoxical pattern that if I have a bad night's sleep, I feel much better during the day and my POTS symptoms are less.

This made me consider the possibility that reduced cardiac output and the immobility of sleep might be having a negative effect. This would seem to take effect without the 24-48 hour delay typically seen in post-exertional malaise.

So, could "under-exertional malaise" be due to effects on RBC flow in the micro-circulation that occur e.g. overnight, in the context of lower cardiac output. Post-exertional malaise might take effect due to shear forces further damaging abnormal RBCs transiting an impaired micro-circulation, in the context of higher cardiac output.

This could lead to a diurnal variation in micro-circulation performance. Constant swings in the tissue and blood metabolic environment that result in cellular adaptations.

Potential mechanisms to consider for this model would be a relative "settling" of the micro-clots that puts them in more contact with the capillary endothelium and promotes the action of their internal inflammogens. A dynamically impaired micro-circulation could reduce venous-side volumes outside of the usual vascular homeostatic compensations.

We don't know if micro-clots are a COVID-related phenomenon only, but the symptoms overlap (including hallmark PEM) seems very important to me. Offers the intriguing possibility that there might be an optimal amount of activity to reduce symptoms, or potentially even help clear the micro-clots.
 

SWAlexander

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"It's been noted that POTS patients are often worse in the morning and then improve over the day, even describing being at their best just before bed-time. I experience this. This could relate simply to overnight dehydration and autonomic changes of course. POTS and ME patients also have "unrefreshing sleep" as a hallmark feature."
For sure that is me. on the other hand I very glad to have more energy now, regardless what time, then I had 3 months ago.
 

SNT Gatchaman

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The unrefreshing sleep aspect has given me an idea for another little experiment I could do — check out the levels of lactate in thigh muscle and cerebral ventricles, using MR spectroscopy. It should be possible to measure these immediately after sleep, and then say 1200, 1700 and 2200.

Would be a nice complement to any potential relationship with diurnal variation of venous oxygen saturation that I want to try and show.

There's potentially a lot of info that could be gained from a single early-onset ME patient, looking in depth, that might guide larger patient studies. I'll see if I can get anywhere with this.
 

SNT Gatchaman

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@SWAlexander Not sure. I'm thinking less relevant during sleep, rather trying to evaluate beginning vs end of day. Measuring during sleep would likely disturb the sleep every time the cuff inflated too. You could do invasive monitoring with a radial artery line but that would be uncomfortable to say the least.

The extreme of this type of investigation though would be to put a subject on a tilt table, with full ICU type monitoring and sedated and see what happens to orthostatic control through the night. Somehow they'd have to remain asleep and not fall off the table too... All very fanciful, so let's hope some useful answers point the way without it.

Basically it would end up being like NASA astronaut investigations but on an early ME patient. Like the doctor who deliberately infected himself with H. pylori to prove the cause of stomach ulcers, would make an epic scientific paper...
 

SWAlexander

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SNT Gatchaman I see your point.
My point is, the unrefreshing sleep aspect. Is low oxidant the reason why there is no energy in the morning but somehow better later in the day? Is it posible that some people not getting enough oxidant during sleep because of low blood pressur?
 
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