In my own specific case, I had severe brain stem compression. This structural problem was causing my POTS, PEM, and classic CFS/ME presentation. No amount of mindfulness ever fixed me. But surgery did. And my surgery was informed by peer-reviewed medical research. I’m not going to assume that everyone on this board has brain stem compression, though I suspect there are others.
That's fascinating, jeff_w, that brainstem compression could cause all the symptoms of ME/CFS, including PEM and severe POTS.
Are you now free of all ME/CFS symptoms after surgically addressing the craniocervical instability that caused your brain stem compression?
I wonder if your experience throws any light on the nature of regular ME/CFS? Could some sort of brainstem compression, or perhaps brainstem swelling due to inflammation, be found in regular ME/CFS, causing or contributing to the symptoms?
If you look at the
ME/CFS brain autopsies, they found enterovirus infection in the brain stem. Dr John Chia says enterovirus likely enters the brain by traveling along the vagus nerve, which runs from gut to the brain; and this nerve happens to enter the brain at the brain stem (the vagus connects to the medulla oblongata of the brain stem). Thus you might guess that the brain stem would be one of the brain areas infected.
If you have an ongoing non-cytolytic enterovirus infection of the brain stem, you might expect some inflammation and perhaps swelling there.
After I developed ME/CFS from what appeared to be coxsackievirus B4 meningitis/encephalitis, I always had this inflammatory feeling in my head at the position of the nape of my neck (which would correspond to the location of the cerebellum and brainstem), and so I wondered if stretching and elongating the neck might allow for better blood flow to the region, which might then relieve the inflammation and in turn perhaps improve ME/CFS symptoms.
So a while ago I did some experiments where I applied a substantial force to pull my whole skull upwards from my spine for around 5 or 10 minutes, in order to stretch and elongate my neck (basically I used some household furniture to wedge my head in place, and then used some of my bodyweight as a downward force, sort of hanging my body under my skull).
After this neck stretching exercise, I noticed some mild improvements to my ME/CFS symptoms, improvements which would last a day or two. But because my stretching setup using furniture was awkward to use, I never really pursued it for longer than a few days of daily application. But I had plans to build an easier to use neck stretcher, so that I could apply it daily for many weeks, to see if further improvements might accrue.