It's quite possible that the cognitive and autonomic symptoms of ME/CFS do indeed result from a very small number of infected cells in the brain and/or the autonomic nervous system.
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Yes, I read about
VanElzakker's paper. I thought it was especially interesting considering my unusual symptoms when I first became ill. As with many other CFS / ME patients, my disease started with a sudden severe viral illness. I first developed splitting headache, flu like myalgias (especially in my legs), sore throat and gastrointestinal symptoms (nausea, anorexia, and epigastric pain). I was hospitalized a month after my initial illness because I had the worse chest pain of my life. I literally thought I was going to die on the way to the hospital. I usually have very high pain threshold. During my hospitalization, I had periodic waves of what felt like catecholamine surge. My heart rate was racing, I experienced whole body flushing sensation, and my left arm turned white and cold to touch. It was the most bizarre experience of my life. It lasted about 2-3 days. I had to call a nurse 2 AM in the morning to touch my left arm because I didn't think anyone would believe my symptoms unless they saw and touched my arm. The doctors didn't know what caused it. They later implied it may have been anxiety by treating me with alprazolam.
Later when I got home, I had time to reflect on my symptoms. I suspected then that there was a connection between my gut and autonomic dysfunction. I believe the portal of entry of the virus (likely enterovirus) was my stomach. Once it got past "GI barrier", it spread to my vagus nerve traveling up to the heart and beyond.
I feel fortunate that my "brain fog" is not very severe. However, Iike many others, my sleep patterns severely disrupted.
After 18 months, I was actually doing fairly well. I was able to manage going back to work in the afternoons for 4-5 hours. My relapse came after getting viral gastroenteritis. I was on my second round of Betaseron. I was taking Equilabrant at the same time. Neither was able to prevent the episode of viral gastroenteritis. It sounds like Dr. Lipkin is on the right track by pursuing "the gut". Perhaps the viral gastroenteritis triggered release of inflammatory cytokines or it caused "immune stress" to tilt the balance towards "vagal dysfunction".
This may be also be part of the reason why we all experience PEM.
Cardiac vagal control before, during and after exercise
J. H. Coote a1 and Valerie F. Bothams a1
a1 Department of Physiology, Medical Sciences, The University of Birmingham, Birmingham B15 2TT, UK
Abstract
There is much evidence showing that the rapid rise in heart rate at the onset of exercise is due to a withdrawal of cardiac vagal tone. This short review discusses the main afferent mechanisms involved in this effect. In addition to signals from central motor command it is shown that muscle mechanoreceptors of group III afferent fibres also play a significant role. Recent studies in man demonstrating this by stretching muscles such as the triceps surae or by direct compression of muscles are briefly reviewed. The evidence also supports the idea that these small fibre mechanoreceptors inhibit the baroreceptor-heart rate reflex. Several studies suggest that skeletal muscle metaboreceptors (mainly group IV) are more important for increasing cardiac sympathetic and vasoconstrictor nerve activity. At the conclusion of exercise the cessation of mechanoreceptor stimulation is an important factor in determining the rapid return of heart rate to resting level.
Experimental Physiology (2001)
86.6, 811-815.
Perhaps exercise influences vagal tone and triggers release of inflammatory cytokines. For some of us, that may be the simple act of standing. It makes me wonder if there was a way to modulate vagal tone, it may lead to at least "Band-aid" treatment.
Hip - thank you for your responses. I don't know about you but these discussions for me are therapeutic.