Thanks for covering this topic! Getting IV fluids weekly has improved my quality of life. If more doctors understood this, more patients would get IV fluid treatment.
TYSM will sdd thid to my files ss I fight now s fourth yesr for them. Only received one nurse visit in two snd s hslf yesrs since my cardiologist rxd them.
Ps myself and sppsrently st least s few other patients in Natelson’s mount Sinai PEM trial ehich measured our blood volume w nuclear medicine methods two days in s row before esch of two days of five minutes of bike exercise with CPET
displayed not low blood volume but hiiiigh blood volume. 🥴😮💨 severely high as in critical care wards.
I figured I must have induced this by drinking soooo much salt 🧂 water 💧 so on the fternoom of day 1️⃣ one as the pem kicked in I cut back on intake. A lottt. I was very determined to see if I could see what effect that had on day two measurements but was really stymied bc holy hell my thirst I slesys violent. Especially off pots meds as I was.
The real shocker to me isn’t just that I had high blood volume. It’s that restricting fluid in setting of pem increased it. 😮💨 severely.
We can wonder how much reducing intake may have increased blood volume or ehether thst is just what my body does during pem. But holy hell there’s a there there.
And it’s not what eveb most of the smartest conventional wisdom suggests.
That is interesting. I wonder if that is a case of different conditions causing similar symptoms. There is a danger of lumping multiple patient groups under one vague criteria. ME/CFS (IOM report/ what CDC now uses) is far too vague. We need to stratify patients using biological findings.
Level of blood volume may be one aspect to stratify patients.
I wonder if this difference could be due to cause of onset.
Thanks for researching and writing this! I've had ME for half a decade. The first couple of years were horrific. I fainted while getting blood tests because my blood was so thick it took ages to get enough for testing. I read an article on Health Rising about low blood volume and it resonated with me. It recommended oral rehydration salts (ORS), which are cheap. I now drink a litre a day, which is a lot. Of all the supplements I take, and dietary and lifestyle changes I've made, nothing has had a bigger impact than ORS, though I remain housebound and unable to work.
Very interesting and disturbing. I wonder if RBC lifespan has ever been investigated in ME? There are various tests available. In my microscopy experiments which put RBCs under moderate stress, a proportion remain visually sound for several days, while others turn transparent suggesting a ruptured membrane causing 'ghost cells'. The difference is striking and to me suggests the presence of vulnerable cells.
My very first ME symptom was an inability to stand for more than a few minutes before feeling I was about to faint. I’d have to lie down immediately. Along with that came the classic ME symptom not much mentioned anymore of feeling I was not in fact fainting but actually dying…
I have another classic symptom which is an inability to tolerate most drugs. They are ok for a day or two then I feel like I’m being poisoned. I imagine that could be a result of having less blood? Would that not magnify the level of drug in the system to a whole new level? Which after a day or two would presumably be quite toxic if your system doesn’t clear it quickly enough?
Thanks for covering this topic! Getting IV fluids weekly has improved my quality of life. If more doctors understood this, more patients would get IV fluid treatment.
I wrote about my experience with IV fluids here: https://colleensteckelmeiccinfo.substack.com/p/iv-fluids-for-treating-myalgic-encephalomyelitis
TYSM will sdd thid to my files ss I fight now s fourth yesr for them. Only received one nurse visit in two snd s hslf yesrs since my cardiologist rxd them.
Ps myself and sppsrently st least s few other patients in Natelson’s mount Sinai PEM trial ehich measured our blood volume w nuclear medicine methods two days in s row before esch of two days of five minutes of bike exercise with CPET
displayed not low blood volume but hiiiigh blood volume. 🥴😮💨 severely high as in critical care wards.
I figured I must have induced this by drinking soooo much salt 🧂 water 💧 so on the fternoom of day 1️⃣ one as the pem kicked in I cut back on intake. A lottt. I was very determined to see if I could see what effect that had on day two measurements but was really stymied bc holy hell my thirst I slesys violent. Especially off pots meds as I was.
The real shocker to me isn’t just that I had high blood volume. It’s that restricting fluid in setting of pem increased it. 😮💨 severely.
We can wonder how much reducing intake may have increased blood volume or ehether thst is just what my body does during pem. But holy hell there’s a there there.
And it’s not what eveb most of the smartest conventional wisdom suggests.
That is interesting. I wonder if that is a case of different conditions causing similar symptoms. There is a danger of lumping multiple patient groups under one vague criteria. ME/CFS (IOM report/ what CDC now uses) is far too vague. We need to stratify patients using biological findings.
Level of blood volume may be one aspect to stratify patients.
I wonder if this difference could be due to cause of onset.
Thanks for researching and writing this! I've had ME for half a decade. The first couple of years were horrific. I fainted while getting blood tests because my blood was so thick it took ages to get enough for testing. I read an article on Health Rising about low blood volume and it resonated with me. It recommended oral rehydration salts (ORS), which are cheap. I now drink a litre a day, which is a lot. Of all the supplements I take, and dietary and lifestyle changes I've made, nothing has had a bigger impact than ORS, though I remain housebound and unable to work.
Thank you so much for this article. Really encapsulates the lived experience through science.
Very interesting and disturbing. I wonder if RBC lifespan has ever been investigated in ME? There are various tests available. In my microscopy experiments which put RBCs under moderate stress, a proportion remain visually sound for several days, while others turn transparent suggesting a ruptured membrane causing 'ghost cells'. The difference is striking and to me suggests the presence of vulnerable cells.
Aspects of this have been explored in earlier studies, to be addressed in my next post.
My very first ME symptom was an inability to stand for more than a few minutes before feeling I was about to faint. I’d have to lie down immediately. Along with that came the classic ME symptom not much mentioned anymore of feeling I was not in fact fainting but actually dying…
I have another classic symptom which is an inability to tolerate most drugs. They are ok for a day or two then I feel like I’m being poisoned. I imagine that could be a result of having less blood? Would that not magnify the level of drug in the system to a whole new level? Which after a day or two would presumably be quite toxic if your system doesn’t clear it quickly enough?
Wow! I just got diagnosed with hypovolemic POTS (and have ME/CFS and LC) so this was an incredibly fascinating read.
Amazing work. Very interesting and enlightening.
There was one typo I noticed:
In an obituary about Streeten, published in the Journal of Clinical Endocrinology and & Metabolism
and &
Merci!