Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Mitochondria (including Naviaux): what are the implications for resting schedules?

Discussion in 'General Treatment' started by Sasha, Sep 15, 2016.

  1. Sasha

    Sasha Fine, thank you

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    "Aggressive resting therapy" has a long history in ME/CFS and some people have done well on it - others, not so much.

    Until now, the rationale for how much you rest and when hasn't been based on the details of our biology (AFAIK).

    Is there now a chance to do that?

    In the light of the Naviaux findings, I was interested to read the posts below, from an old thread that resurfaced in the past few days. In the first post, @Kimsie proposed these ideas about mitochondria and what schedule we should therefore use when we rest:

    A useful summary here from Hip:

    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?

    Lots of questions.

    Please don't take this thread off-topic by discussing supplements or the impossibility of following this programme if you're too sick. Please start other threads for those topics - I'd like this thread to stick to REST ONLY. :)
     
  2. Mij

    Mij Senior Member

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    "So activity uses up the energy that could be used to fix the electron transport chain. By having frequent rests to allow the body to produce NADPH and lower ROS levels, the function of the ETC should improve over time, as long as the person doesn't use the extra energy for activity."

    So basically investing that "extra" energy from resting to reinvest long term to create more energy?

    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.
     
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  3. ahmo

    ahmo Senior Member

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    I think I've been really influenced by these posts from Kimsie. I'm no longer pushing myself. (And I've also had no emergencies which have forced me to push.) And I've had no crashes for at least 2 years. Mind, I don't do much. I'm pretty self-sufficient, take care of my own shopping weekly.

    But I've also stopped pushing to increase my exercise, much as I'd like to. OTOH, I feel like there's an immediate benefit to the minimal resistance exercises I do. OTOH, I don't seem to be able to repeat my few repetitions of arm, leg, abd exercises for many days. And if there's anything else going on, either mental effort, emotional upset, or physical demands, no way I can exercise.

    My exercise tolerance does not seem to be improving. But I'm also not deteriorating, as far as I can tell. I'm unclear whether my most pressing symptoms are from oxidative stress or POTS-lite: light-headed, shortness of breath, generalized feeling of yuk. Antioxidants help somewhat, but I'm not really able to keep these symptoms at bay.
     
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  4. Sasha

    Sasha Fine, thank you

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    When you say "I've done this", what exactly did you do?

    But what Kimsie was talking about goes a long way beyond not pushing yourself. Did you do what she suggested?
     
  5. Mij

    Mij Senior Member

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    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 :D then maybe, just maybe I would do the 15 min on and then off.
     
  6. Mij

    Mij Senior Member

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    I've tried shorter activities and rested for shorter periods of time, not exactly 15 minutes but something similar to that and overall I'm not sure if it makes any difference. Am I supposed to bank up more energy over time? I don't force myself to do more, I'm done with that.
     
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  7. ahmo

    ahmo Senior Member

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    I wasn't as rigorous as suggested. Just far more mindful to rest after activity. Recently I was feeling great, but found tht instead of an hour of mild activities, which I'd expect, I was feeling poorly after 1/2 hour. Instead of pushing through, I lay down. That's the way I've implemented the resting. I'm not timing it minute for minute.
     
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  8. Sasha

    Sasha Fine, thank you

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    How many days in a row would you say you did 15 mins (ish) stretches of activity, alternating with rest?

    Yes, the idea is that by not letting ROS get so high, your mitochondria can use the stuff it would otherwise use to repair ROS damage to heal themselves, so you'd get increasingly more efficient mitochondria and hence more energy.
     
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  9. Sasha

    Sasha Fine, thank you

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    So I think it's fair to say that you haven't done what Kimsie was suggesting. That's not a criticism - it's just important that we know whether any of us has tried that pretty strict set of rules and, if they have, what the results were.
     
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  10. Mij

    Mij Senior Member

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    @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.
     
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  11. GlassHouse

    GlassHouse

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    I'm not sure what is considered rest. Is it laying down in a dark room with no sound or is it anything that's under a person's anaerobic threshold (at which point the cells switch from ox phos to anaerobic metabolism)?
     
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  12. Mij

    Mij Senior Member

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    Do you think this applies to us though?
     
  13. Sasha

    Sasha Fine, thank you

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    I wonder if we're talking at cross-purposes, Mij. I think Kimsie is talking about doing any activity (even if it's just reading) for no more than 10-15 minutes and then having complete rest. So when you say, "types of activities", I think you must be thinking of something different.
     
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  14. Sasha

    Sasha Fine, thank you

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    Yes, that's how Kimsie is defining it - and it includes just letting your mind rest, rather than any active thinking.
     
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  15. Sasha

    Sasha Fine, thank you

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    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?
     
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  16. Mij

    Mij Senior Member

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    Yes, I was referring to body movement type activities in that post, but it also applies to resting mental activities such as talking.. I lie down, wear earplugs and a eye mask throughout the day, sometimes for 15 minutes, sometimes more.
     
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  17. Sasha

    Sasha Fine, thank you

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    So you're resting properly... but the key thing for what Kimsie is saying is limiting the length of the active periods (reading, talking, sitting, walking, anything).
     
  18. Jenny TipsforME

    Jenny TipsforME Senior Member

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    When I did an activity diary for the CFS/ME centre (at a time when I was working and doing relatively well) I noticed that I tended towards quite a long warm up and cool down in activity. I mean mentally, I wasn't so well that I was working out! So I would rest, do low level activity, go to work, do medium activity, do low activity, rest, sleep.

    This is sort of the opposite of the 15min on 15min off approach. But it worked for me when mild.

    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!
     
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  19. Mij

    Mij Senior Member

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

    frog_in_the_fog Test Subject

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    I am all for this "Aggressive resting therapy" concept. I think this all fits quite well with what the research is uncovering. If we can't wake up the energy production cells in our bodies, we should work to develop methods to best utilize what energy we have. If we can somehow boost our energy reserves in the process, this is a real win.
     
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