Thanks for posting this! I just watched the Q & A part, and I learned a lot of new things. I thought I'd ferreted out tons of info on this illness, but he gave some new ideas and perspectives that helped me understand why I feel so crummy.
I'm trying to make sense of this blood volume thing. But to do this I have to read more into it than he said. Anyway, here's what I get from him and what I read into it.
We have low blood volume (idiopathic hypovolemia). But because we also have Systemic Basal Constriction, our blood pressure doesn't drop to a corresponding level. I'm not sure what Systemic Basal Constriction means, and I can't find it with Google. So I'm going to guess is means system-wide constriction of the vascular system. This could be caused by isoprostanes, which can result from oxidative stress. Or, at least, I think he mentioned oxidative stress. But regardless of this, our lower blood volume doesn't show up in routine blood tests because they test the density of blood cells within whole blood, not the total volume of whole blood. Anyway, because we have less blood flowing through us the services provided by blood circulation are diminished. One of these services is delivery of oxygen to cells. So we have less oxygen getting round there in general. But here's what I don't get. How does this all cause orthostatic intolerance. If the vascular constriction is raising blood pressure to compensate for low blood volume, why does it get worse when we stand up? We should feel equally dizzy all the time. But some how blood pools in our lower areas despite compensation by the vascular system. Unless, maybe, there is just not enough blood to keep it distributed despite vascular constriction. Or to put it another way, if there were a way to take the blood pressure in our heads versus our arms, it would be much lower in hour heads.
Sounds good to me. But sometimes a dish of beans sounds good. I wish I could ask Dr. Bell to comment on this.
BTW, while writing this whole thing a light bulb went off in my head. Immune cell tests assume a normal amount of blood. IOW, when they tell us the number of NK cells, they are basing this on the density of NK cells in the blood sample. If we have 1/3 less blood, that means we might have 1/3 fewer NK cells than people with the same score and a normal blood volume. This could tip the scale from us having minor immune problem readings to major immune problem readings. Of course, I imagine human physiology is not that simple. But I think this is worth pondering.
I like Bell. Again, he is one of our heroes.
But some things he mentioned didn't fit to me either.
First let me say, I felt so sorry for him because obviously he was sweating. He kept wiping his forehead.
Also, the poor patient who is obviously desperate. Felt bad for him. Sounds like he is still in the frustration phase.
While I do understand the feeling Bell spoke about, the need to lay down, I also think I experience fatigue. There are times when I feel the feeling and I have to lay down. But then sometimes when I am laying down, I also feel fatigue. I can be laying down feeling ok, just resting. And sometimes I am laying down feeling awful.
Also, I have some confusion like Andrew. When I was five, I started fainting when under sudden embarrassment, felt sudden / severe pain, etc. I faint when blood is drawn, unless I am laying down. It was explained to me that my blood pressure drops when it should rise and goes up when it should be lower. At least, that is the way I understood it in my seven-year-old mind.
And I have had low blood pressure often at the doc's office. So I don't understand the constricting vessels he is speaking about because it seems opposite of what I have known about myself for decades.
David H. P. Streeten, D Phil, David S. Be11
Journal of Chronic Fatigue Syndrome, Vol. 4(1) 1998 copyright 1998
Chronic fatigue syndrome (CFS) is an illness associated with severe activity limitation and a characteristic pattern of symptoms despite a relatively normal physical examination and routine laboratory evaluation. The recent description of delayed orthostatic hypotension in patients with CFS, and previous findings of reduced red blood cell (RBC) mass in other patients with orthostatic hypotension not known to have CFS, led us to measure RBC mass and plasma volume in 19 individuals (15 female, four male) with well characterized, severe CFS. RBC mass was found to be significantly reduced (p < 0.001) below the published normal range in the 16 women, being subnormal in 15 (93.8%) of them as well as in two of the four men. Plasma volume was subnormal in 10 (52.6%) patients and total blood volume was below normal in 12 (63.2%). The high prevalence and frequent severity of the low RBC mass suggest that this abnormality might contribute to the symptoms of CFS by reducing the oxygen-carrying power of the blood reaching the brain in many of these patients.