3 ms·

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 wo

by 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.
  - lend000 4y ago
    Thanks for all the info! I'm glad you found something that worked for you. I've been meditating for 6 months and I suppose it's the best way I've found to calm my body, along with slowing my breathing rate, but I certainly don't have the ability to completely and easily physically relax from that or something like visualizations yet. > I intend to get around to publishing extensively on the matter at some point. Please post on HN when you do! It sounds like your symptoms were a bit different (even between long covid sufferers, they seem to vary greatly), but I definitely understand the difficulty in not "overdoing it" whenever you feel a better than usual. Did you try yoga or other progressive exercises, or did you avoid those stressors until you felt better? Currently, I work out about to my limit of where I get some slight and brief symptoms, and that limit is slowly increasing. I've attempted months of taking it super easy, which brought on different forms of the same symptoms (the fight or flight response, altered breathing and heart rate and brain fog), so it seemed like I might as well just get the exercise.
    - sp527 4y ago
      I limited exercise to walking while recovering. No yoga or anything like that. It doesn't seem essential to recovery, though it certainly can't hurt to do as much of it as your body permits.

by sp527 4y ago

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.
- lend000 4y ago
  Thanks for all the info! I'm glad you found something that worked for you. I've been meditating for 6 months and I suppose it's the best way I've found to calm my body, along with slowing my breathing rate, but I certainly don't have the ability to completely and easily physically relax from that or something like visualizations yet. > I intend to get around to publishing extensively on the matter at some point. Please post on HN when you do! It sounds like your symptoms were a bit different (even between long covid sufferers, they seem to vary greatly), but I definitely understand the difficulty in not "overdoing it" whenever you feel a better than usual. Did you try yoga or other progressive exercises, or did you avoid those stressors until you felt better? Currently, I work out about to my limit of where I get some slight and brief symptoms, and that limit is slowly increasing. I've attempted months of taking it super easy, which brought on different forms of the same symptoms (the fight or flight response, altered breathing and heart rate and brain fog), so it seemed like I might as well just get the exercise.
  - sp527 4y ago
    I limited exercise to walking while recovering. No yoga or anything like that. It doesn't seem essential to recovery, though it certainly can't hurt to do as much of it as your body permits.