Low blood volume

[RainbowCloud]

Moved posts

Is there reliable evidence of reduced blood volume in people with ME/CFS?

Is there an S4ME thread on it?

Here’s where I read about it and another article that’s relevant too. There aren’t many studies because it sounds like it’s difficult to measure blood volume without specialist equipment but the info laid out here sounds logical to me.

https://www.healthrising.org/forums...blood-volume-in-chronic-fatigue-syndrome.234/

https://www.healthrising.org/blog/2023/12/09/chronic-fatigue-syndrome-thirsty-psycogenic-polydipsia/

One thing that I think is important to consider is that if people with ME/CFS do have low blood volume I think much the most plausible explanation for that is that they have been recumbent much of the time.

The above links confirm my own experience as I have POTS and another of my diagnoses/symptoms is diabetes insipidus, confirmed in part by my specific gravity in urine tests always being 0.005-0.010. The extreme thirst was there for me long before the ME started and I believe my POTS began before my ME started too, so for me at least it wasn’t an issue of being reclined or lying down too much. Given that, I believe there’s more to it, but the lack of research in what feels like a crucial area makes it hard to draw firm conclusions.

 

[MSEsperanza]

Lying down produces quite major changes in fluid, oncotic and haemodynamic physiology. So lying down may not be a good thing to encourage people with ME/CFS to do.

So how many hours a day lying down or how many consecutive days would start the process of changing physiology?

Or how often and for how long would you need to stand/ sit up to prevent that change from happening?

Would it also help to only slightly increase the upper body's reclined position in bed?

Apologies if off-topic.

 

[Jonathan Edwards]

Here’s where I read about it and another article that’s relevant too.

Health Rising has never been a very reliable source for science. I remember reading the Bell studies in the past and not being very convinced the conclusions could be applied to the ME/CFS population in a meaningful way.

If there is diabetes insidious present then that would explain a low volume without having any relation to ME/CFS I think.

The problem is that we simply don't have any evidence on what interventions based on these theories are of use. As I tried to emphasise in my Qeios piece it is not good enough having theories that seem to make sense and suggest certain approaches to treatment. You have to go out there and show the treatments are beneficial in trials. I have been through that process myself and it is a life work, but anything short of proof by trials isn't any use to us.

 

[Jonathan Edwards]

So how many hours a day lying down or how many consecutive days would start the process of changing physiology?

I don't know the details. The studies I am aware of were done probably in the 1950s or 1960s.
I don't think we have any answers to these questions in relation to the lives of people with severe ME/CFS and we need answers to be able to advise people sensibly.

 

[JemPD]

Lying down produces quite major changes in fluid, oncotic and haemodynamic physiology. So lying down may not be a good thing to encourage people with ME/CFS to do.

Interesting. This may be veering off topic slightly, but I have often wondered about this - when i'm lying down myself i mean.

But it takes massively more energy to sit up. I am able to walk a little (5yrds or so at a time) so am not completely 'bedbound' & I try to sit up as much as possible just because its easier to do things. I cant stand for more than a few mins even at my best - cant shower for example, has to be a bath, holding self upright on a stool is almost as bad as standing.

It interests me, because when i overdo it & end up in PEM it becomes quite astonishing how much hard work it is to lie in a bed at a 45degree angle. I'm amazed how much more energy it takes, it feels overwhelmingly hard, and its impossible to even think until i am flat.

Sometimes, because of the cognitive issues once i get into bad PEM, i dont know that lying flatter will help me. I have been moved to tears with relief when someone (carer/friend) has suggested lying flatter & lowered the bed.

I'd never have believed the effort it takes to sit up in bed before i got ME, the muscle use in sitting like that is surprising. So i wonder if there were a way to somehow support the body so that it required less effort to sit at 45degrees or more...

I suppose what i'm saying is that it feels to me like it is a bodily 'workout' to sit with the head of the bed raised while i'm in PEM, and the effort of trying to hold myself up in a wheelchair makes me vomit sometimes, it feels like when i completed an aerobics marathon in 1987 for charity & just kept dancing till i threw up. Thats how hard it is.

But i worry about those changes you mention Jo, I want to avoid that, so i wonder if it is actually the sitting up from a muscle/energy use perspective that makes lying down feel so much better - in which case is there a way to hold the body more upright so that it took no effort? (like with a support or harness of some kind - sounds daft but just brainstorming - maybe firm pillows surrounding body & a neck brace to hold the head up) would this be worth exploring.

Or if its something else drivng the urgent sense of desperate need to be flat - similar to OI where everything sometimes goes black when i sit/stand up. Blood pressure/flow to the brain or whatever - sorry this is a very 'lay' ideas

But perhaps, )ETA particularly if the positioning is such a huge factor in cases such as Maeve/Mille etc) we should have a thread on this perhaps be useful to explore?