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Nearly half of Covid patients haven’t fully recovered months later, study finds

nytimes.com

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Re: Nearly half of Covid patients haven’t fully recovered months later, study finds

#151
post #146

Earlier quoted context omitted.

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.

You had ME/CFS and completely cured it using the aforementioned techniques? I'd be interested in learning more details about your journey.

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.

Re: Nearly half of Covid patients haven’t fully recovered months later, study finds

#152
post #151

Earlier quoted context omitted.

You had ME/CFS and completely cured it using the aforementioned techniques? I'd be interested in learning more details about your journey.

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…

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.

Re: Nearly half of Covid patients haven’t fully recovered months later, study finds

#153
post #151

Earlier quoted context omitted.

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…

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. Plea…

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.

Re: Nearly half of Covid patients haven’t fully recovered months later, study finds

#154

Earlier quoted context omitted.

Check out the stellate ganglion block shot - seems promising for long covid. Hypothesis is that the body is stuck in "fight or flight" mode, and this shot stuns a few of the nerves responsible "long enough" for the autonomic nervous system to "reset." Some of the reddit anecdotes are pretty amazing.

Any particular sub-reddit you read about this on?

Here is one case: https://www.reddit.com/r/dysautonomia/comments/ut4c0b/recove...

Re: Nearly half of Covid patients haven’t fully recovered months later, study finds

#155

I can't confirm this but I _may_ have had COVID Jan 2020, and ever since then I get waves of coughs / other symptoms every couple weeks or so that last for at least a week; it never goes away. Never had anything like this before that one time being sick other than seasonal bronchitis a few years in a row about a decade ago. Only other thing I can thing of is allergies but I've now lived in multiple places during the…

> I _may_ have had COVID Jan 2020 Unless you can contract trace yourself to someone who worked in Wuhan (or you worked in China then) this is fantastically unlikely and makes you a Unicorn. It is thousands of times more likely that you got one of the numerous flu like viruses going around in Jan 2020, and post-viral sequalae from viruses is not unique to SARS-CoV-2. And you can have allergies to so many things that i…

You are probably 100% correct.

However, I did work with engineers during that time who had recently traveled from Wuhan and seen family there. I also passed through both SFO and SEA airports at very busy times at the end of December/beginning of January, and had been in LA at tourist areas with tour buses full of people.

So it may not be incredibly likely, but there's a chance.

And again, could be allergies, but I'm not sure they'd suddenly start being this much of a problem at my age (late 20's/early 30's). But I'm no expert.

Re: Nearly half of Covid patients haven’t fully recovered months later, study finds

#156

Earlier quoted context omitted.

> I _may_ have had COVID Jan 2020 Unless you can contract trace yourself to someone who worked in Wuhan (or you worked in China then) this is fantastically unlikely and makes you a Unicorn. It is thousands of times more likely that you got one of the numerous flu like viruses going around in Jan 2020, and post-viral sequalae from viruses is not unique to SARS-CoV-2. And you can have allergies to so many things that i…

You are probably 100% correct. However, I did work with engineers during that time who had recently traveled from Wuhan and seen family there. I also passed through both SFO and SEA airports at very busy times at the end of December/beginning of January, and had been in LA at tourist areas with tour buses full of people. So it may not be incredibly likely, but there's a chance. And again, could be allergies, but I'm…

I flew from Cancun to SEA in the beginning of January 2020. Lots and lots of people did.

Did those engineers get sick, before you were symptomatic, and had you had close contact with them (meetings, dinners, etc)? And did you have the characteristic loss of taste/smell? If you can answer 'yes' to all of those (including that they were definitely sick with the correct timeframe) then you've got at least a better case than most people who got sick in Jan 2020. But even given someone who had visited Wuhan in early Jan and had respiratory symptoms, it is more likely that it wasn't SARS-CoV-2 and it was just normal influenza/cold-like viruses.

And you can definitely have allergies get worse as you age, late 20s is probably when mine got bad, and they've gotten worse over time and I get sore throats now and they feel nearly like a cold. My Birch allergy got really noticeable sometime in the last 10 years.

Get an allergy test, though, and see.

Re: Nearly half of Covid patients haven’t fully recovered months later, study finds

#158

I know 21 people that have had covid, from 3 to 91. 1 person had long covid, still requires oxygen months later. Either my friends and family are unduly healthy, or there's maybe something questionable about the "half". If I flipped a coin 21 times and it only came up tails once, I wouldn't believe it was a fair coin...

How many were vaccinated?

15, including the 1 with long covid

Re: Nearly half of Covid patients haven’t fully recovered months later, study finds

#159
post #121

Earlier quoted context omitted.

I have no idea if OP is exaggerating, or even telling the truth. The point is that anecdotes are worthless. Giving anecdotes any level of serious consideration is inherently exaggeration of a niche position. This subthread is now filled with comments taking an anecdote from a complete stranger -- someone they don't know and whose story they cannot possibly verify -- and attempting to shame/attack/villainize anyone wh…

no one is trying to attack you because of an alternative narrative. if you left out the “let’s not exaggerate” part it would be an anecdote of perfectly equal value, because both are anecdotes by internet strangers as you say. people are attacking you because you were highly insensitive in carrying the conversation to a point where in addition to talking about your own experience, you assumed the other person was try…

> you assumed the other person was trying to tilt the convo to their favor by using emotions, and you are trying to devalue their personal experience.

You assume the OP was telling the truth, and therefore, we should all defer to the emotional anecdote.

What if they're not? How would you know?

The only difference between us is that I don't make that assumption. Giving undue credence to anecdotes is a form of exaggeration.

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