Myalgic Encephalomyelitis Community
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Blood Volume

Epogen is a human Erythropoietin, glycoprotein that controls red blood cell production in bone marrow.

Used as a treatment in orthostatic hypertension a condition in which blood pressure drops upon standing,

causing dizziness, light headedness or fainting.

Dr David Streeten discovered while treating patients for orthostatic intolerance that one had a low plasma volume and another had a low circulating blood volume both of these patients turned out as having an

ME/CFS diagnosis, when contacted by Dr David Bell who had ME/CFS patients with the same symptoms further research was carried out with results published 1997-1998

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Yes, this is definitely a factor in Myalgic Encephalomyelitis. International ME expert Dr Byron Hyde discusses in his book 'Missed Diagnoses: Myalgic Encephalomyelitis and Chronic Fatigue Syndrome' many abnormalities known to be found in classic ME patients. One of these is low circulating blood volume. Dr Hyde says that many of his patients have just 75-50% of the circulating blood volume humans should have. And in a number of his patients even less than 50% of normal circulating blood volume.

No wonder ME patients are ill! It's a wonder ME patients can even function at all like this!

Dr Hyde argues that there are many objectively testable abnormalities in ME patients - which he has personally documented over decades and there are around at least 4000 research studies proving - if only the money and clinical resources are devoted to testing these patients.

Tragically due to the psychosomatic proponents doctors are discouraged from investigating physical symptoms ME patients have to find the underlying cause - including and especially by NICE Guidelines which are an appalling travesty - as they believe medical testing would encourage the patient to 'erroneously' 'believe' they are really ill! It's an insane and clinically very risky approach when there are thousands of documented research studies showing biomedical abnormalities in the bodies and central nervous systems of ME patients.

The psychosomatic approach in the UK puts lives at risk - and literally costs lives - by not investigating medical symptoms in ME patients so the underlying causes - which may be treatable - remain hidden.

Dr Byron Hyde's book is available at Amazon.

There's a long way to go for us patents to get justice but we will keep fighting!

The scientific facts can't be ignored forever!


Neurocirculatory asthenia is a long winded term for the rather straightforward findings following Dr. Bell and Dr. Streeten's research. In plain English, it describes a person's inability—arising from the brain—to maintain adequate, normal blood flow to all areas of the body.

The test of any theory is does it adequately describe the symptoms we know of while predicting areas for research previously not suspected, it also as Bell has said ends one theory "Nobody can say that a half-normal blood volume is psychosomatic,"

POTS (Postural tachycardia syndrome) an autonomic nervous system dysfunction with similar symptoms that ME/CFS experience

Understanding poor circulation, blood pooling, heart arrhythmia, headaches, poor digestion caused by the autonomic nervous system management of vascular constriction and dilation provides some insight for treatment that eases some of the symptoms.


Thanks Ian123, good explanation.

Some patients with classic ME have POTS and/or neurally mediated hypotension (NMH), both arising from autonomic nervous system (ANS) dysfunction.

The difficulty is POTS causes many similar symptoms to CFS and some people may be told they have CFS when actually they have POTS and not CFS.

However some patients with classic ME also have POTS as one part of the ME.

The way to discern whether a person is suffering from POTS alone or POTS as part of ME is to check whether in the patient there are other medical anomalies not normally found in POTS which are recognised biomedical abnormalities in ME. Where there are, the person will have ME with POTS as a part of the ME, and where there are not a person may just have POTS.

Unfortunately none of these assessments and tests are currently performed in clinical practice so anyone reading this will find it extremely unlikely at best and probably impossible to get any such clarification from their doctors.

However over time we hope there will be an increasing emphasis on proper ME knowledge, treatment and testing, and far better clarification of differential diagnosis.

Some patients with CFS who do not have Myalgic Encephalomyelitis may not have POTS, nor NMH and these may be the patients with a more basic fatigue of other potential causes who MAY (but still may not if they have other biomedical abnormalities) respond to graded exercise.

The fact that these groups of patients are not differentiated in the majority of research is the reason why there are conflicting findings in graded exercise therapy trials.

Classic ME patients have such a nature and range of physical abnormalities in their bodies and central nervous systems that in this much more specific patient group graded exercise can only be detrimental.

Now that increasingly researchers are attempting to sub-classify groups of fatiguing illnesses, over time research will be more targeted to specific patient groups which should - if done right - yield less conflicting results.

Having said all this, anyone with a diagnosis of ME who suffers orthostatic intolerance - dizziness, sweatiness, on being upright, such that they have to sit or lie down because they feel faint - or at worst suffer actually blackouts when in an upright position - should be offered testing for conditions that cause orthostatic intolerance, which includes POTS and NMH.


There is no doubting the added complexity of co-morbid conditions when a wide spectrum of causality will produce the symptoms.

Continuing with circulation of blood controlled by the autonomic nervous system

pause the subtitles as often as needed, reading and understanding are one task too many for me unless it's slowly (cognitive impairment from brain blood flow ?)


The link mentioned above by Ian123 is Dr Kenny De Meirleir who is a renowned ME expert (not based in UK :-( but contributing a lot to understanding of ME internationally).

In the youtube film he discusses ME and blood circulation and the various mechanisms involved in this very good and short video.

It was produced by the Dutch ME group ME/CVS Vereniging as funded by the government i believe who invested in educational materials about ME.

I watched this myself a while ago and was impressed.

It can be understood by a lay person, but like Ian123 said, if you have cognitive dysfunction, may need to watch more than once or pause and replay bits of it to take it all in (But that is because of the subtitles; not because of medical jargon so can be understood by lay people!). However it's worth a watch and it's not long and is very useful.

I'll attempt to post the link again here as it didn't come up as a hyperlink in original post.

Studies have shown that the cognitive impairment in ME is directly caused by decreased perfusion (blood flow) to the brain in ME patients, which is particularly pronounced on even minor exertion.


Dr. Visser, a Dutch cardiologist, has treated thousands of ME patients he now focuses on ME/CFS



Ok, hopefully this shortened link to the above mentioned youtube film will work as a hyperlink!

Third time lucky hopefully!

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