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

[CFS_for_19_years]

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).

By trial and error I think one can come up with something that works and won't leave one feeling groggy. For someone like myself with GERD, it's not recommended to lie down until after 2 hours have past after a meal. So when I was experimenting with planned rest periods (which I don't do now since I'm mainly bedbound anyway) I stayed upright and did my usual activities (sitting or very light housework) and then took a 45-minute rest prior to lunch and another 45-minute rest prior to dinner. I rested on my bed with the lights out, no TV or books, eyes closed.
I can't say that it did anything to help with my energy levels or being able to heal, but it could be one example of a template for activity and rest.

 

[Luther Blissett]

When I was first diagnosed, I was with an occupational therapist for other health matters, who co-incidentally had ME. She advised me to alternate 30 mins activity (any, even watching TV) with 30 mins complete rest. I did this for a couple of weeks very strictly, until I had developed a kind of routine.

I think this helped me avoid the problem that many have at first, where they push until they crash. I've had a very slow deterioration in some aspects in the years since, but I seem to avoid a lot of the problems that a lot of you have. (No bad reactions to medications, sensitivity to chemicals etc.) When I do crash now, I'm usually able to recover by sleeping extra, and taking more rest. I have not had a period of long crashes, maybe the longest was 14 days, but that was a rare event.

 

[Sasha]

Thanks for the comments, guys - but we seem to be talking about a huge range of schedules that people have used for pacing, that aren't based on what we know or suspect about the function of the mitochondria, and I'd like to get back onto that track (which may mean that no-one posts anything, but that's fair enough!).

Kimsie's proposed method was based on what she thought was the issue underlying the mitochondrial problem (not just for us, but for her sons, who had different health issues).

Does anyone have thoughts about the biology and its implications for resting schedules?

@alex3619, @Hip - wondering if your thoughts on this have developed since you posted on Kimsie's original thread.

Kimsie herself didn't post on that thread again - I'd like to have known how her sons got on, using that schedule.

 

[trishrhymes]

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

I have had ME for 26 years, and don't think I've ever heard the phrase 'aggressive resting therapy', though I have read a lot about pacing in various versions and have been helped a bit recently by wearing a Fitbit to help me stop myself doing too much, so I'm crashing less often, though my health isn't improving.

I have a couple of questions:

1. Has any clinical trial been done on this compared to, say, more self directed pacing? I can imagine it would be hard to study because there would need to be some way of measuring whether people were actually adhering strictly to the complete rest lying in the dark. I imagine using an actometer to check for physically resting and a continuous heart rate monitor to check whether the person was relaxed might be possible, but how do you know if they've been listening to the radio, for example. I guess that would be down to self reporting. And what measure of success would you use, and over what time period? We've seen the fiasco of the PACE trial questionnaire based nonsense. So are we left just with anecdotal evidence?

2. How do people who practice this method cope with the difficulty I have - an overactive mind that won't switch off and gets bored and restless if I try. Can you use relaxation CD's or listen to music or the radio? I find relaxation CD's useless anyway, as my mind just fights them and they wind me up. On the other hand I use CD's of all the Harry Potter books read by Stephen Fry to help me sleep at night. It is so familiar I can drift off to his soothing voice, and if I'm wakeful it's sufficiently engaging to distract me from my own thoughts that might wind me up. And how do you stop yourself falling asleep, and subsequently messing up your sleep patterns?

The biology is fascinating, I know enough to follow the science in outline, but not enough to know whether this particular interpretation in relation to ME has any validity, so I can't help there.

 

[lansbergen]

an overactive mind that won't switch off

If you mean the brain is in overdrive and wont stop, I can tell you in my case it disappeared with overall improvement.

I did no resting therapy but learned to recognise the first sign it was time to stop and drop everything right away.

 

[alex3619]

@alex3619, - wondering if your thoughts on this have developed since you posted on Kimsie's original thread.

I have not done much additional thinking along these lines. I have not gotten deep into biochemistry for several years now, largely because my memory is kaput.

However the hypometabolic findings have additional interpretations, which in some ways are similar to the notion of resting the mitochondria, and in some ways are against it.

The first is that our mitochondria are inherently resting. They cannot increase activity. So when we push we are drawing on alternative pathways, including producing lactic acid, and cannibalizing our own proteins, metabolites etc. This implies that pushing ourselves will not be good. I think Myhill has said similar things.

Another aspect is that this is an enforced hypometabolic state. Something is doing that. An increase in energy use might trigger an increase in the enforcing signal. Pushing is bad. This would apply in graded exercise too.

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.

We need to know more of the science. Its very early days yet. What pathways are affected, and what feedback loops are involved, could change all our reasoning.

The hypometabolic state can change all our theories. Its going to be a wild ride, and I mean that in a fun and fascinating sense.

 

[Mij]

@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?

 

[Mij]

@alex3619 what are your thoughts on what Kimise wrote here:

"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"

 

[alex3619]

@alex3619 what are your thoughts on what Kimise wrote here:

"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"

First, without a reference, something to confirm the basic idea, I cannot comment on that part. The body does change, and I would expect key mitochondrial elements, to change fast. However if we are hypometabolic there might be issues with the rate of change.

Second, there is nothing magical about two weeks as this would be a continuous process. It would imply however, presuming its correct, that it takes many weeks to see positive benefits, not just two, unless the rate of improvement is very fast. In other words, you would not expect to see improvement in just a few days. WIthout a measure of rate of change its impossible to give a time frame. A rapid turnover, such as two weeks, just means that things might be improved in reasonable time.

What we know from spontaneous remissions, and perhaps rapid declines, is that changes can occur in hours. I personally favour the idea that there is some kind of master switch, or switches.

 

[Seven7]

Well when I could use the HR, is all very straight forward.

Your HR will tell you when things are too much. If you wake up with HR over 8% of RHR you know you over did day before. Keep HR under AT while on activity, When I am not recovering my HR will not go down so you know how much activity you can handle when you go by HR.
So in the day I am ok I can lets say walk for 15 min, with HR under AT then I rest for the 15min. When I try the next set my HR has to be back to resting HR. If it is not then, I know that rest period is not long enough so I go double the 15min (so 30min rest). If the RHR does not go back I know I cannot handle another set.

Now regular activity, lets say I wake up with RHR of 84bpm. Then I start my breakfast (nothing crazy just standing leisurely) and 2 minutes in I hit 115bpm (My AT) then I know that day I can handle 2min tops in activity before I need a rest period.,

Your heart rate will tell you what you need to know if you monitor it and learn its patterns.

 

[Sasha]

Thanks, @Inester7, but I want to keep this thread on the topic of the mitochondria, and the implications of what we're learning about their function in our disease state for a resting schedule.

People have a lot of interesting things to say about pacing, but they belong on a pacing thread!

 

[trishrhymes]

Hi Sasha, I think it was my fault the subject of heart rate monitors was raised when I was wondering how compliance to a study protocol for aggressive rest therapy might be monitored.

Something that I'm wondering about is since mitochondria act within individual cells in tissues such as muscle, how would my reading a book while lying down resting my muscles (using brain cells not muscle cells) impact on the recovery of the electron transport happening within a muscle cell.

Maybe that's a silly question -after all when we use our muscles, we inevitably engage the brain too, though not necessarily the same parts of the brain.

 

[Sasha]

I've wondered that also, @trishrhymes.

 

[Chris]

I find this timing business fascinating, and it connects with several things for me. I used to start most mornings (like Inester 7 I have read Nancy Klimas and Connie Sol on this HR thing, though I find using the thing a bit irritating, and I am not so strict) by taking a short walk alongside the beach very close to where I live. I used to walk maybe 10mins, rest on a bench for 5-10, then return more slowly, often experiencing some warning symptoms on the return, and being moderately wiped out for the rest of the morning--if I tried to do anything, I usually triggered PEM. Now I usually walk barefoot on the sand, and when I feel those first internal signals that say "far enough" I sit on the beach--feet at same height as hips--and lean my back against a log. I sit there for maybe 15 m,my mind pretty relaxed, then return a bit slowly, and most mornings after a short rest I can do some things, though as before any excess activity will trigger trouble. This was started long before I read what Kimsie recommends, but it is fairly close, and it seems to work--I get some pleasurable mild exercise without ruining my day. If my RHR is above 72 or so upon waking I stay put.

I am also very interested in how Low Level Light Therapy may help us, and timing plays a role there too. Lew Lim, CEO of Vielight, makers of several LED devices, has settled on a Pulsing rate of 10 Hz for his latest, the 810 intranasal and the Neuro, which is based on a more powerful version of the 810 plus 4 transcranial capsules, all synchronized to 10 HZ, and at a Duty Cycle of 50%, which means they are actually emitting photons for about 50% of the time. The advantages of Pulsing (as compared with Continuous Wave) are that it penetrates deeper, reduces the risk of heating tissue--and maybe, though he has not articulated this--gives a bit of time for those antioxidants to mop up some of the ROS that are a side effect of the increase in ATP that is the best documented immediate effect of Red and Near InfraRed light in the range of approx. 630-900nm. There is a German LED unit called the Repuls that uses a Pulse of 2.5Hz, with the articulated aim of helping clear those ROS (it is becoming clear that there are other signaling messages going on triggered by this light energy).

There are as yet no published reports on using LLLT for ME, but there are a couple of short papers using it on a mouse model of MS, which seems to share a good many pathways with us, though of course not all. These recorded benefit during a one week series of sessions, but that a week's pause was needed before another week proved beneficial. I would guess that mice live on a timescale considerably quicker than we large mammals, though I have no idea what the ratio might be. It apppears that timing, duration and frequency are all equally important in trying to make this stuff helpful for us. I would suspect that there are several timescales that are relevant here--Kimsie points to 15minutes and two weeks as important--I wonder if there are not more at play? I do wish Kimsie had added a few references--I would love to learn more about this timing business. Does anyone have any published references to the time frames that Kimsie uses?

 

[Mij]

@Chris may I ask how long you've been ill? Sasha, this is on topic, the question has to do with the duration of illness, and since this resonates with Chris it would be interesting to compare short term and long term mito function.

 

[ahmo]

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.

correct.

 

[Chris]

@Mij, I was hit by ME in 2007, so nine years; mind you, I was already 74 back then. I will just add a word about what I wrote about LLLT--in my view, Pulsing the light is a form of introducing mini-rests into the active intervention--I just wish again I had more info about how long these processes take--I find Kimsie's two week timing very interesting, but would love to know more.

 

[Chris]

The more I think about this topic, the more likely it seems to me that there are probably multiple metabolic rhythms going on simultaneously, all having some effect on the final result--life is built on intersecting rythms--diurnal (blue light to wake in the morning, cut it in the evening--melatonin), hormonal (more evident in women, obviously), brain rhythms (Lew Lim has deliberately chosen to pulse his 810 and Neuro at 10Hz to encourage the Alpha rhythms of the brain, while recognizing that there are many other rhythms playing simultaneously). The two week thing sounds very interesting, but I wonder if it is really the single master key? The 15m rest after 15m activity sounds like another intuitively relevant one.

 

[loops]

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.

 

[Cheesus]

@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?