Mitochondria (including Naviaux): what are the implications for resting schedules?

[Cheesus]

The problem for me is that I have....the POTS overactive Sympathic nervous system. This is, I assume, the 'wired but tired' state. If the parasympathetic nervous system can't be immediately switched on during the 15 minutes then the resting will not be happening. Those surges of adrenalin just don't allow it.

I have found meditation to be immensely helpful for the wired but tired feeling, though it is not a quick fix. Low dose naltrexone has also been hugely beneficial for my overactive nervous system - probably more than meditation.

 

[trishrhymes]

@Sasha

I haven't read through the whole thread, but I did once engage in aggressive rest therapy.

I was much better then than I am now, and I was doing 45 minutes of absolute rest followed by 15 minutes of activity. It was insanely boring but I kept at it. After about two weeks I started to feel really awful. i got all sorts of new symptoms. Then after a few months, my condition started to change remarkably and I improved rapidly. I knew beforehand that I was about to improve because I was constantly hungry.

Unfortunately I ultimately got ahead of myself and did too much, and drove myself into a horrendous two year crash that I am only just coming out of with the help of LDN. I tried aggressive rest during that time, but I was so sick that I could not physically rest enough as I still had to do things like brush my teeth and answer the call of nature. I am pleased you have reminded me about aggressive rest because I am now well enough to 'get behind' the ME as it were.

It is going to take a lot of willpower to do it again. It is really difficult. I think I may try to give it a go though. Want me to keep you updated?

That sounds really interesting, Cheesus, please do report how it goes. I'm thinking about trying aggressive rest therapy, but not sure I have the will power to rest so completely - I'm tempted to at least put the radio or a CD on just to stop me going mad with boredom and using up energy mentally fighting myself.

 

[Cheesus]

That sounds really interesting, Cheesus, please do report how it goes. I'm thinking about trying aggressive rest therapy, but not sure I have the will power to rest so completely - I'm tempted to at least put the radio or a CD on just to stop me going mad with boredom and using up energy mentally fighting myself.

I think what rest really is depends on how sick you are. For some rest is only complete and utter silence, eyes closed, lying down. For others rest might be listening to a quiet podcast. Whatever it means, you need to have excess energy left at the end of the day. One good way to make sure you get more rest than you immediately require is to force yourself to continue resting for a while longer when your boredom tells you it is time to get up.

 

[Cheesus]

I'm sorry, @Sasha, I have just noticed you wanted to keep this about mitochondria specifically. Unfortunately I really do not know much about that. Certainly a rise in GSH might explain why I suddenly felt so awful after resting for a few weeks. I always assumed it was a herx because my immune system had enough energy to do its business.

Whatever it was, the connection between the initial worsening, subsequent improvement and my aggressive rest was crystal clear.

 

[Sasha]

Don't worry, @Cheesus - I've long since given up trying to keep it on track! I think the upshot is that no-one knows the implications for resting, based on what we now know or suspect about mitochondria.

 

[Sasha]

@Sasha

I haven't read through the whole thread, but I did once engage in aggressive rest therapy.

I was much better then than I am now, and I was doing 45 minutes of absolute rest followed by 15 minutes of activity. It was insanely boring but I kept at it. After about two weeks I started to feel really awful. i got all sorts of new symptoms. Then after a few months, my condition started to change remarkably and I improved rapidly. I knew beforehand that I was about to improve because I was constantly hungry.

Unfortunately I ultimately got ahead of myself and did too much, and drove myself into a horrendous two year crash that I am only just coming out of with the help of LDN. I tried aggressive rest during that time, but I was so sick that I could not physically rest enough as I still had to do things like brush my teeth and answer the call of nature. I am pleased you have reminded me about aggressive rest because I am now well enough to 'get behind' the ME as it were.

It is going to take a lot of willpower to do it again. It is really difficult. I think I may try to give it a go though. Want me to keep you updated?

I think that would need a new thread on aggressive rest therapy (or to add it to an old one, if there is one). That's a very interesting account and people need to be able to find it on a properly labelled thread.

 

[Cheesus]

I think that would need a new thread on aggressive rest therapy (or to add it to an old one, if there is one). That's a very interesting account and people need to be able to find it on a properly labelled thread.

That is a good idea. I will do just that.

ETA: Here is said thread

http://forums.phoenixrising.me/index.php?threads/aggressive-rest-therapy-my-experience.46904/

 

[Mij]

@Sasha

this applies to MS, but I think this would be of benefit for us too

Important innovations in imaging, including those pioneered by Dr. Martin Kerschensteiner at Ludwig-Maximilians-University in Munich (Germany), are allowing researchers to probe the oxidation states in individual mitochondria in real time, giving them a window into the inner mechanisms that leads to neuronal damage in response to ROS and pave the way for treatments that can prevent neurodegeneration and disability.

https://drkarenlee.ca/mitochondria-how-the-power-plants-of-our-cells-are-linked-to-progressive-ms/

 

[ghosalb]

I wonder if combining resting with less eating will be helpful. If our metabolism is only say 30 % efficient and we eat normal portions, that has to overburden the system and possibly damage it even more. I try to take as long a break as possible between meals and to keep my mind distracted when I get hungry, I try to do small chores. I find that I am lot more energetic during these times.

 

[taniaaust1]

It takes a little over 2 weeks to replace most of the ETC clusters, so every 2 weeks we want to see animprovement in the function of the ETC clusters, and that means the electron transport chain will work a little better every two weeks, as long as the person does not increase activity levels which will draw the extra energy into ATP instead of NADPH!

How does NADPH get rid of ROS? NADPH is used to recycle GSSH back to GSH, or glutathione. So this is what is causing those low GSH/GSSH ratios. And the ratio you get when you are tested is the whole cell, not just the mitochondria, so you can be sure that your GSH/GSSH ratio in your mitochondria are worse than what the tests show.

This problem with glutathione is also why detox becomes such an issue

that all makes so much sense to me as if I increase my activities a wee bit to test out my bodies reaction to a new level of activites eg if Im trying to change my baseline.. I find I need to test it out over 2-3 weeks before i can really say that new level is safe for me to make sure it isnt going to be negatively impacting. Its only via that longer period can I really be sure.

I found having extra glutathione to be benefical to me (one of the very few things which helps me) so this makes sense.

Does it mean that those who have developed MCS have had more of this damage, further advanced damage?

Note that Kimsie suggests not just "loads of rest" but keeping periods of activity very short (this is key), and alternating with periods of complete rest (not just reclining watching TV, etc.), with timings based on what might be the underlying biology.

Wondering what people think of this, especially in the light of the Naviaux findings.

What would be the ideal rest/activity schedule? It's really tough to do 15 mins on / 15 mins off (I've done it today and I feel stunned, groggy and weakened).

How soon should one see effects, if this is true?

If you manage to stick to a good schedule (whatever that is) but then blow your budget one day, are you back to square one?

I find the longer I do something for, the longer I need to rest so yeah this all makes sense. This all gives me food for thought, maybe I arent recovering any due to when I do do things, at times Im probably doing them too long for.

As I have severe POTS and dysautonomia though, this makes the little bouts of frequent doing much harder as to get up, Im setting that off each time hence why I prefer doing something in a bit longer block with having a longer rest period.

If you are doing a good schedule for you, if its going to be having benefits, I'd think you'd be starting to show improvement in 2-3 weeks. Its important to keep a journal as very slight improvements are easy to miss.

For every 15 activity minutes I do.. I need AT LEAST 2 hours rest.

 

[taniaaust1]

"
I don't understand this:

"It takes a little over 2 weeks to replace most of the ETC clusters, so every 2 weeks we want to see an improvement in the function of the ETC clusters, and that means the electron transport chain will work a little better every two weeks, as long as the person does not increase activity levels which will draw the extra energy into ATP instead of NADPH!"

How do we know that it takes a little over 2 weeks? Are we supposed to feel this difference? I've done this and I still feel as though my "energy bank" remains the same.

For me if Im pacing correctly yes I can feel the difference and from my own experience I've learnt it needs to be over 2-3 weeks, if I try to judge over one week I can end up getting the wrong opinion of something being okay for me when it actually isnt.

If it isnt working for you it may mean you havent got the rest to activity level right (or that you are like in a different subgroup of CFS or ME and dont physiologically have the same thing going on with all this, a different illness). I think it can be very difficult for people to get the rest to activity level right and many may think they are resting enough but are not.

 

[taniaaust1]

I enjoy power walking when I'm rested and able because I don't use up mental energy or use my arms and can be outdoors. I know from experimenting that I can walk for an hour or a little less and not experience delayed PEM the next day. I'm using this as my guide line.

If only I can see what is going on in my cells then maybe, just maybe I would do the 15 min on and then off.

I could never regularly "power walk" for exercise for more then just a minute, that's too aerobic like for me so would have the same response on my body as running for a minute. Signs of PEM do need to be looked further then just a day as it can have an acculmative affect and may appear even days later with the build up of that affect.

 

[taniaaust1]

@Sasha I don't do these types of activities days in a row, I give myself at least 3 days of rest in between, otherwise I feel terrible and can't cook for myself etc. I spread it out, and it depends on how I'm feeling too.

You need to find the sustainable base level for yourself for activities so you arent having all these up and downs with things. Once you know what that is.. eg how much is safe for you to do in a day consistantly over say 2-3 weeks without ill effect. Then do it in little chunks and then you may find you will start to improve.

 

[taniaaust1]

I don't know.

My general question is, what does our knowledge (or theories) about what's wrong with our mitochondria imply for how we should most effectively rest?

I think we need to consider that we could do different things to rest but with some ways of resting, the recovery of the mito is slower, eg someone can rest laying in bed watching tv but its probably slower then someone actually resting by not doing a thing.

We also should be considering other things affecting our mito too to help heal this eg we may be on mito damaging drugs. So this fixing the mito I dont think should be solely about how we do our activities and rest but also considering if we are doing anything else harmful to them preventing us from healing.

When I was doing aggressive rest therapy which did lead to a ME remission, it was complete resting I was doing (no radio listening, no tv watching in rest periods). I actually used to force myself to sleep (which wasnt too hard at that time as I had hypersomnia back then)

 

[taniaaust1]

I find it hard to switch my mind off. Lots of tired but wired. I'd spend 15min attempting to rest then be back to activity!

that's a problem with all this. "attempting to rest" isnt probably all that helpful if a person isnt actually managing to rest eg laying there mind going 100 miles per hour, thinking about all the things you want to be doing instead of forcing yourself to be laying there in bed.

This is why short rest periods are currently inefficient in my case as it takes some time for me just to be able to wind down before I get into true rest. You've really got to be able to let go and not care about stuff while you are resting to really be able to do this well.

Some may trial this but have it fail as they were just attempting to rest and actually did not rest.

 

[taniaaust1]

@Sasha yes, I was thinking a while back that I should consider only power walking for 30 minutes instead of one hour.

I personally dont think you should be doing any power walking till you've worked out your safe daily activity limits in which you arent crashing (can you go a couple of weeks without crashing?) and only then introduce some exercise. Maybe one which doesnt get the heart rate up fast at first and introducing it slowly.. till you can know how much you can safely do of exercise of a daily level.

Its better to work up to a safe activity level rather then be cutting back and back trying to figure it out (and probably damaging things in the mean time.

 

[taniaaust1]

I wonder if combining resting with less eating will be helpful. If our metabolism is only say 30 % efficient and we eat normal portions, that has to overburden the system and possibly damage it even more. I try to take as long a break as possible between meals and to keep my mind distracted when I get hungry, I try to do small chores. I find that I am lot more energetic during these times.

if you are more energetic when hungry, have you considered you may have an issue with certain foods in which you havent figured out yet. That turned out to be one of my issues. I was always far more energetic if I was missing meals and not eatting much.. actually felt like I had some energy. It turned out I had 3-4 different food issues though.

 

[taniaaust1]

And how do you stop yourself falling asleep, and subsequently messing up your sleep patterns?

falling asleep is a type of completely rest so in this mode of helping mito it would still fit. You may well find if you try this that even if you do fall asleep that you will very soon wake up. I used to find that my naps would only last 15-20mins and they'd be far more refreshing then just laying in bed resting for that same amount of time.

Unless you experiement with it, you dont really know and it may actually have the opposite affect and aid you in sleeping better at night too

 

[taniaaust1]

Under utilizing our energy on the other hand might lead to decreased signals to maintain existing capacities, though its possible a hypometabolic state is protective here..

I dont think this method of doing things is necessarily under utilizing our energy as one can still do a lot in a day but just with doing it in small blocks at a time with rest in between. Its not necessarily about doing less but the way things are being paced out over the day.

(I thought still find there is an level of activity in a day which I cant go over without giving me issues but then maybe that means I didnt rest long enough).

 

[taniaaust1]

@Sasha I was thinking about this 15min activity and 15min off resting period schedule and I would find this difficult to do because I find that *trying* to get myself into a restful state (especially mental wise) takes whatever time it takes just to get into that zone. I would not want to force myself to get back up or read or even talk once I finally get my mind to relax and rest. I reboot once I feel that calm rested feeling and that can take whatever time it takes.

Do you understand what I mean?

you could still do activities in short amounts but in your case it would just mean that your rest periods would have to be longer to allow yourself to get into the rest mode.

If you are having to "force" yourself to get back up, this to me would mean you are doing too much.

So things come back to knowing how much your body can happily be doing each day before trying to break everything down to be using a method such as this one for improvement