The short “Dysfunction Junction” article on the autonomic nervous system and ME/CFS by Dr. Pocinki first appeared on the SMCI website about ten years ago. Even a decade later its portrayal of those problems present in this fundamental system of the body is the most evocative I’ve ever seen.
Through his testing Dr Pocinki uncovers an autonomic nervous system that is not at rest when resting, which flops around like a fish out of water at the slightest provocation, and which may even be causing the unusual problems with stimuli.
Check out a classic in
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Some work has gone on in POTS to identify the autoimmune basis of the autonomic nervous system problems there. The work has been very promising but slow. Fluge and Mella are doing a blood vessel study alongside their Rituximab study.
As to remedies – other than Rituximab – I don’t know.
The frustrating thing for me is that I did recover from CFS using a mind body therapy that addresses the problem of an overstimulated nervous system.. there are people out there who can help you to ‘reset’ the SND.. but people call them quacks… oh well..
Has anyone out there seen this Dr. Poconki and had any success with his treatment protocols. I’m in desperate need of some help and at least he’s semi close to me. Looking for a little hope.
Well at $400 an hour plus travel expenses even if I managed to be ” lucky” enough to get through the extra long wait list it would NEVER be doable for me. It is ABSOLUTELY SICKENING !!!!! We need treatment! And not only for the wealthy. Sickening!
This does point to a repeating issue with the nervous system though! Doctors find problems where they look for them. Some research was done on a small call with POTS/OI that challenged the nervous system assumption.
They very simply put fluids into ME patients to resolve the now widly acknowledged issue with low blood volume. And guess what? The nervous system signalling normalised.
Reseachers do forget sometimes that both nervous and immune systems are dynamic – the monitor and respond, they do not only control blindly.
It is so important to keep sight of these inter-relationships and not assume which is chicken, which is egg. I was very pleased that Shungu and Natelson while assuming oxidative stress is the primary driver, they remain open to any one of Oxidative/Immune/Mitochondrial pathology. These are the kinds of open minds we need.
I wonder though to what extent funding panels our the issue here. They like a solid hypothesis of X is causing Y and Z. Where what we need is one of X, Y and Z are all happening, our research aims to examine this relatioship and establish which of the three is the causal issue.
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The short “Dysfunction Junction” article on the autonomic nervous system and ME/CFS by Dr. Pocinki first appeared on the SMCI website about ten years ago. Even a decade later its portrayal of those problems present in this fundamental system of the body is the most evocative I’ve ever seen.
Health Rising’s Quickie Summer Donation Drive is On!
So, a decade later has anyone, anywhere followed up with research to try and understand how one might possibly remedy this dysfunction?
Some work has gone on in POTS to identify the autoimmune basis of the autonomic nervous system problems there. The work has been very promising but slow. Fluge and Mella are doing a blood vessel study alongside their Rituximab study.
As to remedies – other than Rituximab – I don’t know.
The frustrating thing for me is that I did recover from CFS using a mind body therapy that addresses the problem of an overstimulated nervous system.. there are people out there who can help you to ‘reset’ the SND.. but people call them quacks… oh well..
Meant to say ANS
Hi Rebecca, people recover from ME/CFS in all sorts of ways. Congratulations on your recovery. Anything that reduces the stimulation of the nervous system is a good idea in my book. I encourage you to put your story on Health Rising’s Mind/Body/Pacing recovery stories section – https://www.healthrising.org/forums/recovery-stories/categories/mind-body-pacing-exercise.125/
Wyller thinks the autonomic nervous system works abnormally for compensation, right?
Has anyone out there seen this Dr. Poconki and had any success with his treatment protocols. I’m in desperate need of some help and at least he’s semi close to me. Looking for a little hope.
He gets great ratings on Dr’s websites. I heard he’s booked up but if I was in the area I would get on his wait list. Good luck!
Well at $400 an hour plus travel expenses even if I managed to be ” lucky” enough to get through the extra long wait list it would NEVER be doable for me. It is ABSOLUTELY SICKENING !!!!! We need treatment! And not only for the wealthy. Sickening!
Wow…I know how you feel! What a shame that the less well off among us are deprived of access to health simply because we’re less well off.
This does point to a repeating issue with the nervous system though! Doctors find problems where they look for them. Some research was done on a small call with POTS/OI that challenged the nervous system assumption.
They very simply put fluids into ME patients to resolve the now widly acknowledged issue with low blood volume. And guess what? The nervous system signalling normalised.
Reseachers do forget sometimes that both nervous and immune systems are dynamic – the monitor and respond, they do not only control blindly.
It is so important to keep sight of these inter-relationships and not assume which is chicken, which is egg. I was very pleased that Shungu and Natelson while assuming oxidative stress is the primary driver, they remain open to any one of Oxidative/Immune/Mitochondrial pathology. These are the kinds of open minds we need.
I wonder though to what extent funding panels our the issue here. They like a solid hypothesis of X is causing Y and Z. Where what we need is one of X, Y and Z are all happening, our research aims to examine this relatioship and establish which of the three is the causal issue.