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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Blood volume status in CFS/ME correlates with the presence or absence of orthostatic symptoms
- Thread starter Hufsamor
- Start date
Conclusions: Adults with ME/CFS had a significantly lower blood volume if they had a clinical suspicion of OI compared to those without a clinical suspicion of OI, as well as a significantly lower blood volume compared to the expected value. The data suggest that accounting for symptoms of OI could enhance the detection of the subset with reduced blood volume.
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Cort
Phoenix Rising Founder
- Messages
- 7,390
So glad to finally see a study on low blood volume...It seems like such a fundamental problem yet studies are rare. Small study but very good to see. Hopefully more will be coming
I've never understood why measuring blood volume can't be a test for ME, or at least a test for a large subgroup of the desease. I know finding treatment is more urgetn. But a biomarket that is so clear and identifies such a potentially high percentage of sufferers should be pushed by all the ME groups.
It was already discovered in the 90s.
It was already discovered in the 90s.
I went down the dysautonomia/POTS route a couple years ago when I passed out on a tilt table. After doing more tilt tables at different research centers, I no longer would pass out on them. I think 2 things contributed to me passing out on the first one. First of all, I was not allowed any fluids past 9:00pm the night before and the test was at 10:00am the next morning. I also was very symptomatic at the time of the first tilt table. The other tilt tests were done during the day and there was no restriction of fluids.
No doctor could really put their finger down and say I for sure had POTS, because I was riding that fine line of an increase in heart rate of 30bpm or more. I was always around the 15-25bpm range.
No doctor could really put their finger down and say I for sure had POTS, because I was riding that fine line of an increase in heart rate of 30bpm or more. I was always around the 15-25bpm range.
Low blood volume can be difficult to reliably quantify. A potential cause of low blood volume is Central Diabetes Insipidus (CDI). CDI is also difficult to test for reliably, very low specificity when differentiating psychogenic polydipsia (PPD) from CDI. For a few years, research has been progressing on hypotonic infusion stimulated co-peptin (precursor for arginine vasopressin) levels as a diagnostic test for CDI. The bottom line after several studies is that the co-peptin test is proving to be highly specific when used to differentiate PPD from CDI. This is potentially huge. The test isn't as simple as a blood draw but the interpretation of the results appears to be very straight forward.
taniaaust1
Senior Member
- Messages
- 13,054
- Location
- Sth Australia
I found one can show up okay on POTS testing if one fluid (water) loads as many of us do just to get to the appointment. I'd loaded up on so much water before a poor man's test at a dysautonomia clinic that I was peeing every 20mins (I peed 3 times just while waiting to be called in) and the found that the POTS which clearly used to show up, then actually to my shock did not.
So I suggest for anyone to make sure you dont over load yourself on fluids right before testing.
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Im so glad they are doing more research on this area as I get very severely low blood volume. I know that as it takes two bags of saline IV to recover when I collapse.