4 ms·

You might want to look into ANS Rewire. Dan Neuffer does an excellent job of covering some of the (speculative) science behind ME/CFS, which is also known as 'p

by sp527 4y ago

You might want to look into ANS Rewire. Dan Neuffer does an excellent job of covering some of the (speculative) science behind ME/CFS, which is also known as 'post-viral syndrome'. A number of researchers believe long Covid might simply be ME/CFS. Neuffer's central thesis in ANS Rewire is that CFS is a disorder of the autonomic nervous system. And that's more or less in line with the WHO, which classifies CFS as a disorder of the nervous system generally. ANS Rewire explains what you're observing with high GI foods too: insulin spikes are interpreted as a stressor by an overreactive ANS and sugar regulation in a CFS body appears to be compromised primarily because cortisol is an insulin suppressant. He recommends dietary modifications of the kind you're pursuing. Mostly it sounds like you're doing the right stuff already. If you want to recover faster, then there is one strategy that is essential: find ways to quickly and effectively relax yourself every time your nervous system produces an acute response to a stressor (usually in the form of intensified fatigue or brain fog). The most effective for me was to rotate through a large series of relaxing visualizations. So, for example, imagine yourself on a beach in the Bahamas. You do need to rotate visualizations because there's a tendency to become accustomed to any particular one. It sounds absurd, but it does work, so long as you're consistent. Takes about 1-2 months to start noticing major improvements. There's a fairly complete list of relaxation techniques you can try here: https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/relaxation-technique/art-20045368 https://www.mayoclinic.org/healthy-lifestyle/stress-manageme.... Note that Dan Neuffer's 'REWIRE' technique works along these lines, but he doesn't recommend a visualization strategy, which I found to be far more effective than what he proposes. The principle is consistent though: the nervous system will stop overreacting to stressors if it is retrained out of the pattern. The most effective way to do that is to become deeply relaxed as often as possible throughout the day and especially when you sense that nervous system activation is spiking. When you emerge from the CFS state, it will happen rather suddenly. There's an excellent description of the recovery pattern here: https://drmyhill.co.uk/wiki/CFS_-_Catastrophe_theory:_why_we_get_into_and_how_we_get_out_of_CFS https://drmyhill.co.uk/wiki/CFS_-_Catastrophe_theory:_why_we.... (Note that the rest of this website is a mixed bag, with a lot of things I wouldn't endorse; that post was written by a guest author)

lend000 4y ago
Interesting. This is very in line with my experience, and I'll try to incorporate in your recommendations and see if they work. I dedicate a significant portion of my life to managing the symptoms and optimizing my health now, which is somewhat working, but also annoying. It would be cool for it to just go away completely as you mentioned. Did you see the sibling comment about stellate ganglion block shot? Not sure if my symptoms are bad enough at this point to risk messing with such a delicate area, but there is certainly a temptation to just be "cured."
- sp527 4y ago
  I sympathize with the desire to find an effective treatment and it took me years to abandon trying. I can’t tell you whether or not you should do the same. I would advise trying the holistic nervous system approach as well as anything else you think might help (that isn’t dangerous). There’s no reason not to try everything you possibly can.
  - lend000 4y ago
    You had ME/CFS and completely cured it using the aforementioned techniques? I'd be interested in learning more details about your journey.
    - sp527 4y ago
      Yes I’m in complete remission. I intend to get around to publishing extensively on the matter at some point. I had a few false starts before I figured out that most of the strategies typically proposed are superfluous. It was hard to sustain multiple habits (CFS itself makes it much more difficult) and I suspect that’s a common failure mode in recovery. So, I pared back my approach to just 4 things that I regarded as essential: visualizations during the day as needed and as described, walking outside 3-4 times per week, meditation in the mornings (used the Waking Up app), and intense sleep hygiene (including using visualizations and other techniques to become deeply relaxed right before falling asleep). The sleep part was critical for me personally and I suspect would be for most people with CFS. At one point in my journey, I did a polysomnography and discovered that my sleep architecture is highly disordered (no surprise in CFS). In particular, the study showed I had an astounding zero percent deep sleep. My theory is that chronic nervous system activation prevents brain waves from slowing down to a low enough frequency to enter the deepest (and most restorative) stages of sleep. If you’ve ever had a random ‘good day’, then you’ve observed the difference and probably wondered why you suddenly felt so much better and how you might sustain that. In fact, you can look at r/CFS and you’ll see countless stories of people frustrated at suddenly feeling better and not understanding why. The answer, in my view, lies in how relaxed you happen to be while sleeping. I didn’t have to modify my diet or do anything else to get better. Took about 2 months to start breaking out of the CFS state and 2 more months to become consistently stable. Things keep improving, as you maintain what you’re doing. And you’ll recover roughly in step with how much you do to target the nervous system (and inflammation) and how often you do it. A good model for what you need to do is weaken and override neural patterns that have been reinforced for a long time. It doesn’t happen all at once. I would also advise limiting activity that causes overactivation of your nervous system. You shouldn’t need to go out of your way to create situations to practice what I call ‘counter-relaxation’. You’ll also very naturally want to do much more as you start to get better, so you can expand your activity slowly as you regain energy.

by sp527 4y ago

lend000 4y ago

Interesting. This is very in line with my experience, and I'll try to incorporate in your recommendations and see if they work. I dedicate a significant portion of my life to managing the symptoms and optimizing my health now, which is somewhat working, but also annoying. It would be cool for it to just go away completely as you mentioned. Did you see the sibling comment about stellate ganglion block shot? Not sure if my symptoms are bad enough at this point to risk messing with such a delicate area, but there is certainly a temptation to just be "cured."

sp527 4y ago
I sympathize with the desire to find an effective treatment and it took me years to abandon trying. I can’t tell you whether or not you should do the same. I would advise trying the holistic nervous system approach as well as anything else you think might help (that isn’t dangerous). There’s no reason not to try everything you possibly can.
- lend000 4y ago
  You had ME/CFS and completely cured it using the aforementioned techniques? I'd be interested in learning more details about your journey.
  - sp527 4y ago
    Yes I’m in complete remission. I intend to get around to publishing extensively on the matter at some point. I had a few false starts before I figured out that most of the strategies typically proposed are superfluous. It was hard to sustain multiple habits (CFS itself makes it much more difficult) and I suspect that’s a common failure mode in recovery. So, I pared back my approach to just 4 things that I regarded as essential: visualizations during the day as needed and as described, walking outside 3-4 times per week, meditation in the mornings (used the Waking Up app), and intense sleep hygiene (including using visualizations and other techniques to become deeply relaxed right before falling asleep). The sleep part was critical for me personally and I suspect would be for most people with CFS. At one point in my journey, I did a polysomnography and discovered that my sleep architecture is highly disordered (no surprise in CFS). In particular, the study showed I had an astounding zero percent deep sleep. My theory is that chronic nervous system activation prevents brain waves from slowing down to a low enough frequency to enter the deepest (and most restorative) stages of sleep. If you’ve ever had a random ‘good day’, then you’ve observed the difference and probably wondered why you suddenly felt so much better and how you might sustain that. In fact, you can look at r/CFS and you’ll see countless stories of people frustrated at suddenly feeling better and not understanding why. The answer, in my view, lies in how relaxed you happen to be while sleeping. I didn’t have to modify my diet or do anything else to get better. Took about 2 months to start breaking out of the CFS state and 2 more months to become consistently stable. Things keep improving, as you maintain what you’re doing. And you’ll recover roughly in step with how much you do to target the nervous system (and inflammation) and how often you do it. A good model for what you need to do is weaken and override neural patterns that have been reinforced for a long time. It doesn’t happen all at once. I would also advise limiting activity that causes overactivation of your nervous system. You shouldn’t need to go out of your way to create situations to practice what I call ‘counter-relaxation’. You’ll also very naturally want to do much more as you start to get better, so you can expand your activity slowly as you regain energy.