Rest periods and can CFS people get really well?

[Gingergrrl]

Sorry about that. Adreno explained.

@Kimsie No worries and thank you for the info. My doctor was not familiar with the research study or the kit by Genova but was open to the idea and not against me trying it. It is on my (long) list of things to explore further in 2015.

 

[Mel9]

@Kimsie I didn't even try to read all the science in your post b/c I know it is over my head, but wanted to comment on this part. For me, if I have a day or even a few hours that I can breathe better or have more energy, I always feel the need to do something. I feel a sense of accomplishment and relief when I get something done and if I am able to do something with family or friends, I feel better psychologically that I was able to participate. It is so hard to rest in those rare moments that I am able to do something. And what I "do" is still a fraction of anything that I did in my former life.

How do you force yourself to rest if you have a rare moment of feeling better?

My husband has now learnt to remind me when I have done enough

 

[Hanna]

@Kimsie, thanks for this thread. I want to give your hypothesis a try and began two days ago to pace myself according to your instructions (with some failures here and there, but trying to apply it really with a chrono.) as I have a 6-8 hours "activity" window per day.
I'll try to report how my body reacts. I know that takes time.

My supplementation already includes D-ribose, NAD, carnitine, magnesium, active folate and B12 (and more else).
Would it be interesting to take the glycinate-malate form of magnesium ?
I take Epsom bath salts bath twice a week for sulphate.

 

[Kimsie]

@Kimsie, thanks for this thread. I want to give your hypothesis a try and began two days ago to pace myself according to your instructions (with some failures here and there, but trying to apply it really with a chrono.) as I have a 6-8 hours "activity" window per day.
I'll try to report how my body reacts. I know that takes time.

My supplementation already includes D-ribose, NAD, carnitine, magnesium, active folate and B12 (and more else).
Would it be interesting to take the glycinate-malate form of magnesium ?
I take Epsom bath salts bath twice a week for sulphate.

Do you normally get PEM? If you do, and you find you are still getting PEM with the rest periods, then you need to adjust something. If you can add some magnesium with malate in it, that would probably give a little boost to the NADPH synthesis.

Don't worry if you can't exactly follow the rest periods all the time; by making changes towards shorter activity periods you should be able to make progress, but the more you can break up the activity with total rest periods the faster progress should be.

 

[sueami]

I should report in. I found this thread last Saturday, as I was starting a pretty strong pre-Christmas-exertion crash.
I did my best to break up the remaining Christmas activity with 15-20 minute rest breaks. I was able to rest pretty well and consistently Sunday and Monday, then we had to travel an hour to loud, rather chaotic extended family on Tuesday, I had shopping to wrap up with DH on Wed and we traveled again (through heavy snow that turned the return trip into 2 1/2 hours) to celebrate with the same family yesterday.

Though I had periods of that profound mitochondrial exhaustion, a return of light heart palpitations, and flu-like symptoms episodically throughout, as the days went on, I was able to bounce back from feeling exhausted and sick with a rest period. The greater energy/well feeling lasted from 15 minutes to an hour or more sometimes.

I'm surprised that I feel as well as I do this morning (I don't feel like I'm in a crash, just the usual low-level fatigue) and I'm excited to incorporate these rests into my days now that the huge extra stress of the holidays are gone. Can't wait to see how much better I can feel!

One other thing I've noticed, I've consistently slept 9 1/2 to 10 hours a night for several years now, exhausted deep sleep every night. The last couple of nights I've been waking up feeling as refreshed as I'm likely feel with this dysfunction after 8-9 hours. Resting during the day is shortening my nighttime sleep, which should have been a no-brainer to consider, but I've always hated napping so I've resisted it. (Lying in front of the woodstove with the cat snuggled up to me has made napping much more appealing. )

 

[Kimsie]

I should report in. I found this thread last Saturday, as I was starting a pretty strong pre-Christmas-exertion crash.
I did my best to break up the remaining Christmas activity with 15-20 minute rest breaks. I was able to rest pretty well and consistently Sunday and Monday, then we had to travel an hour to loud, rather chaotic extended family on Tuesday, I had shopping to wrap up with DH on Wed and we traveled again (through heavy snow that turned the return trip into 2 1/2 hours) to celebrate with the same family yesterday.

Though I had periods of that profound mitochondrial exhaustion, a return of light heart palpitations, and flu-like symptoms episodically throughout, as the days went on, I was able to bounce back from feeling exhausted and sick with a rest period. The greater energy/well feeling lasted from 15 minutes to an hour or more sometimes.

I'm surprised that I feel as well as I do this morning (I don't feel like I'm in a crash, just the usual low-level fatigue) and I'm excited to incorporate these rests into my days now that the huge extra stress of the holidays are gone. Can't wait to see how much better I can feel!

One other thing I've noticed, I've consistently slept 9 1/2 to 10 hours a night for several years now, exhausted deep sleep every night. The last couple of nights I've been waking up feeling as refreshed as I'm likely feel with this dysfunction after 8-9 hours. Resting during the day is shortening my nighttime sleep, which should have been a no-brainer to consider, but I've always hated napping so I've resisted it. (Lying in front of the woodstove with the cat snuggled up to me has made napping much more appealing. )

That's great! I hope that when you lie down with the cat you aren't petting it! That's too much activity for a total rest period, sorry to say.

When you say heart palpitations do you mean that you can feel your normal heart beat, or do you mean sometimes feeling an abnormal heart beat?

 

[sueami]

Most of the time, the cat is just a nice belly warmer. If she wants pets, then I stay on the floor longer so I get those 15 minutes in.

I'll double check to see if I'm skipping beats next time (that was happening a few months ago in a previous crash when my adrenals were tanked by some unusual life stress), but I think it's more of a fluttery, unpleasant sensation in the heart center -- rather hard to describe, but I experience something similar in low-potassium episodes.

I realized I was putting off resting this morning and when I laid down, I made the connection why: I don't feel the fatigue/wired-but-tired feeling when I'm on the computer or moving around but it becomes quite palpable when the other stimuli are removed, and I don't like it. That's why I've been avoiding naps or resting even (which is of course only making it worse.)

It's good to recognize why I'm fighting a healing behavior and to understand why it benefits me to just be with the fatigue. It does lift sooner if I lie down sooner.

 

[sueami]

Actually, I am having skipped beats, mixed with that thudding heartbeat sensation and the weird fluttery feelings.

I was skipping beats a lot back in Sept and my reg doc ordered an echocardiogram that he said came out fine, while my functional medicine doc felt the skipped beats were happening as a result of hormonal disregulation (i'm perimenopause) caused by adrenal fatigue (DH had just lost his primary source of income when the magazine he designs shut its doors.)

I'll monitor to see if the heard arhythmias subside as I rest more post-holiday.

 

[Kimsie]

Actually, I am having skipped beats, mixed with that thudding heartbeat sensation and the weird fluttery feelings.

I was skipping beats a lot back in Sept and my reg doc ordered an echocardiogram that he said came out fine, while my functional medicine doc felt the skipped beats were happening as a result of hormonal disregulation (i'm perimenopause) caused by adrenal fatigue (DH had just lost his primary source of income when the magazine he designs shut its doors.)

I'll monitor to see if the heard arhythmias subside as I rest more post-holiday.

I was wondering because I'm perimenopause, too (still at 57!), and for the last 3 years I have been able to feel my heart beat whenever I hold still. This started at the same time that D started his symptoms and I was sick at the same time as when he had mono, but I wasn't all that sick and I never was tested for mono, but the heartbeat started while I was sick, then went away for about a month and then came back for good. I can't help wondering if I could have problems with my mitochondria, too, only I don't have many symptoms, yet. I am going to have my cysteine/sulfate ratio checked soon and that should tell me if I do or not.

With me it's just that I can feel my heart beating when it appears to be beating normally, I don't think I am having skipped beats. I haven't been to a doctor for it in particular.

I am afraid this is rather off topic. Sorry to you others...

 

[sueami]

When I was being scheduled for the echocardiogram, the staffer who was making the referral told me that she was getting trigeminies quite badly a few years back, in her late 30s, making it hard for her to work full-time.

That's the type of arrhythmia that I was diagnosed with at the start of my strange health problems about 5 years ago -- I didn't feel it then. Now if I take my pulse I can feel when the beat doesn't happen when it should, and I have sensations in the chest at the same time.

Because her episodes seemed to be tied to her cycle, she was put on some sort of hormone replacement therapy by her physician that reduced but not quite eliminated her arrhythmias. We discussed hormones because I'd just started my period after a several-month hiatus and wondered if there was a connection.

My functional med doc suggested I take a tiny dose of DHEA (5mg) and a half-teaspoon of maca powder daily. Apparently maca contains the precursors that the adrenals use to make other hormones. That has helped, or else the stress-management/cognitive work I did around DH's employment situation and my health were sufficiently stress-reducing in themselves.

So could be hormonal levels needing support, or adrenals tiring out? I keep wondering about the connection between CFS and adrenal fatigue. I notice that I can push myself through the early and even the middle stages of that deep mitochondrial exhaustion by keeping busy. A lot of the other symptoms don't seem to appear when I push through the fatigue, until I lay down to rest.

I suspect my adrenals are somehow stepping up to bat, and that I have been draining them badly by not resting immediately upon feeling any fatigue. I vow to do better for my mitochondria and my adrenals in 2015!

 

[Hanna]

Do you normally get PEM? If you do, and you find you are still getting PEM with the rest periods, then you need to adjust something. If you can add some magnesium with malate in it, that would probably give a little boost to the NADPH synthesis.

Don't worry if you can't exactly follow the rest periods all the time; by making changes towards shorter activity periods you should be able to make progress, but the more you can break up the activity with total rest periods the faster progress should be.

When I decided to begin this new mito-pacing programme, I was in fact in the middle of a big PEM (I overdid the whole week - as I had noticed some first longlasting improvement for years ). It is still there, struggling with more O.I and pain.

I have introduced glycinate/lysinate magnesium instead of the malate one. Will correct the inexactitude.
I wonder if I'd better add some niacinamide too to my 25 mg NAD...

One more thing, @Kimsie , could you please explain a little bit more -in a simple way- what are those iron-sulfur clusters ? I havn't understand yet (sorry for my poor scientific background + brain fog + foreign language).

 

[Kimsie]

When I decided to begin this new mito-pacing programme, I was in fact in the middle of a big PEM (I overdid the whole week - as I had noticed some first longlasting improvement for years ). It is still there, struggling with more O.I and pain.

I have introduced glycinate/lysinate magnesium instead of the malate one. Will correct the inexactitude.
I wonder if I'd better add some niacinamide too to my 25 mg NAD...

One more thing, @Kimsie , could you please explain a little bit more -in a simple way- what are those iron-sulfur clusters ? I havn't understand yet (sorry for my poor scientific background + brain fog + foreign language).

The most technical parts are blue and you don't have to read them if you don't want to.

It isn't very important to understand exactly what iron-sulfur clusters are (except they have iron and sulfur molecules in them), but it's important to understand that the electron transport chain uses iron-sulfur clusters to pass the electrons through the chain. That's how the energy is passed from the electrons so that the protons (H+) can be moved into the intermembrane space so that we can utilize the energy to either make ATP or NADPH.

(Heme is also used in some parts of the ETC to move electrons, so both heme and iron-sulfur clusters have to be functional for the ETC to work well.) Here is an illustration that is from Wikipedia's page on oxidative phosphorylation that shows the first unit of the electron transport chain, which is called Complex I.

They call the iron-sulfur clusters Fe-S centers in this illustraton, and you can see that the electrons have to move through each one of the iron-sulfur clusters. If even one of the iron-sulfur clusters is non-functional, then it breaks the chain in that particular Complex and that Complex I will be non-functional even if the rest of the iron-sulfur clusters in it are good. The complexes are scattered around in the inner membrane, so if a certain percentage of them are not functioning, then it takes longer the CoQ10's and the cyctochrome C's, which move around through the inner membrane transporting the electrons from one complex to the next, to find a complex which can accept the electrons, and energy production through oxidative phosphorylation is slowed down or inhibited. How much it is slowed down depends on how many of the complexes are not functioning.

So you can see that the higher percentage of good iron-sulfur cluster (meaning the less ROS, or oxidative stress) at the time the cluster is assembled, the less inhibited the ETC will be.

I think that niacinamide is helpful, as long as you are strict about the rest periods.

 

[Hanna]

@Kimsie, thanks for the additionnal explanation!

 

[Hip]

This is because in these illnesses when the body is active it has to use all of its energy for the activity, and ROS, or oxidative stress, builds up in the mitochondria.

If ROS were driving ME/CFS, then patients would feel much better when taking antioxidants. However, antioxidants generally do not make a great deal of difference to ME/CFS patients' symptoms.

I even tried the spin trap antioxidant called tempol, which specifically acts as a Mn-SOD (aka: SOD2) memetic, which is the SOD that is found exclusively in the mitochondria; but tempol did not improve my ME/CFS symptoms.

Prof Martin Pall appeared to go into remission from his ME/CFS after taking an antioxidant protocol; but in general, antioxidant show little benefit for ME/CFS.

So your theory would not seem very likely.

 

[taniaaust1]

If ROS were driving ME/CFS, then patients would feel much better when taking antioxidants. However, antioxidants generally do not make a great deal of difference to ME/CFS patient's symptoms..

My allergy symptoms are helped by antioxidents. Thou one cant say that is much when one has so many different symptoms.

 

[adreno]

If ROS were driving ME/CFS, then patients would feel much better when taking antioxidants. However, antioxidants generally do not make a great deal of difference to ME/CFS patient's symptoms.

Are you sure about this? ROS is tied to microglial activation, which seems central to ME/CFS. And antioxidants do seem to be able to help with this, if they can cross the BBB.

But I agree that the problem probably starts with immune system activation (in turn increasing ROS) rather than the electron transport chain. On the other hand, ROS also leads to increased inflammation.

 

[Kimsie]

Are you sure about this? ROS is tied to microglial activation, which seems central to ME/CFS. And antioxidants do seem to be able to help with this, if they can cross the BBB.

But I agree that the problem probably starts with immune system activation (in turn increasing ROS) rather than the electron transport chain. On the other hand, ROS also leads to increased inflammation.

Adreno, my hypothesis is that these illnesses begin with oxidative stress that the body can't deal with. I have stated over and over that in my two sons this oxidative stress was caused by the Epstein Barr Virus, or mono. My personal belief is that usually there is a virus or infection that starts the process going.

According to my hypothesis this oxidative stress damages the iron-sulfur clusters and if it continues for long enough - i.e. about 2-3 weeks or more, enough of the electron transport chain complexes are damaged to cause a vicious cycle which continues even if the original virus or infection is resolved.

So my theory is that these illnesses are started by immune system activation, which raises ROS as a defense, but becomes a vicious cycle involving the electron transport chain.

I think there might be some confusion because there are so many things to explain about about my hypothesis and it becomes so complex that no one wants to, or is able to, wade through all my explanations and so I break up my hypothesis into parts to try to explain only part of it at a time, and then people don't understand the whole.

If ROS were driving ME/CFS, then patients would feel much better when taking antioxidants. However, antioxidants generally do not make a great deal of difference to ME/CFS patient's symptoms.

I even tried the spin trap antioxidant called tempol, which specifically raises Mn-SOD (aka: SOD2), which is the SOD that is found exclusively in the mitochondria; but tempol did not improve my ME/CFS symptoms.

Hip, I am pretty sure that you have either not read, or not understood, my explanation of how ROS is involved these illnesses in the opening post of this thread, according to my hypothesis. It doesn't matter if your SOD works perfectly if you don't have enough NADPH to support glutathione reductase, because SOD makes H2O2 and without enough NADPH you won't have enough reduced glutathione, (and thioredoxin), in your mitochondria to get the H2O2 down to normal, and H2O2 damages iron-sulfur clusters. This is the heart of the vicious cycle causing these illnesses, according to my hypothesis.

I have not been able to find antioxidants which deal with H2O2, and are not ultimately dependent on NADPH, and that can be taken in large enough amounts to deal with the ROS. As you can see in this diagram glutathione, vitamin C and vitamin E all depend on NADPH availability.

Prof Martin Pall appeared to go into remission from his ME/CFS after taking an antioxidant protocol; but in general, antioxidant show little benefit for ME/CFS.

So your theory would not seem very likely.

This whole thread is about the only treatment I feel is really able to deal with the heart of the problem. Antioxidents are just a little booster that a person could use with the rest periods. According to my theory, antioxidents could never overcome the vicious cycle, or at least, I haven't found one yet that could, but I keep looking.

 

[sueami]

I've noticed two interesting psychological phenomenon of testing out Kimsie's theory.

For the first time ever, I've gone into a crash feeling calm and even sanguine about it. Having a theory that makes sense of what is potentially going wrong has let me relax and go with the flow in a way I never have in a crash. I usually waste a significant amount of energy resisting the crash and worrying about how long it will last, will I really come out of it, have I done permanent damage, etc.

Instead, I've been reasonably content to nap or zone out in front of the wood stove or in my sunporch or bed, for days on end now. As a result, much of the most unpleasant effects of a crash have not materialized, or not for very long. The flu-like feeling, the body aches, the palpitations and skipped heartbeats are minimal this go round.

Not stressing out about being in a crash has let me do one other thing -- pay close attention to the signs that I am still under mitochondrial stress. Before, as soon as the ill feelings started to lift, I would focus on feeling better and expand my activity levels.

I ignored the subtle signs that I was still struggling -- the slight breathlessness.after a half-flight of stairs, the fatigue in its various manifestations, the unpleasant sensations in the heart center when I've been active for 15-30 minutes (sometimes food prep and eating takes longer 15 minutes.)

Now I notice them, and it renews my determination to keep resting, instead of feeling determined to catch up on work as soon as I started to feel better.

I do want to re-read you r early posts, @Kimsie, to better understand why you think this is actually, ultimately fixable, but I've run out of time to be on the computer, so that will have to wait.

Thanks again for posting this theory and protocol. I'm quite grateful you did.

 

[Gingergrrl]

@Kimsie I want to echo @sueami's post and ask you besides implementing the resting, what else are we supposed to do as part of your hypothesis? I don't understand any of the scientific diagrams (not b/c of you, they are just above my comprehension level.) But I was wondering on a practical level, what else do you advise besides resting?

I am interested in the Genova cysteine/sulphate test kit but how do you find a doctor familiar with this to test out a supplement protocol? Did you find a doctor in your son's case? You can always send me a PM if easier.

Thanks again!

 

[Sushi]

I am interested in the Genova cysteine/sulphate test kit but how do you find a doctor familiar with this to test out a supplement protocol?

I have called Genova in the past to ask if there are any doctors near me who have ordered such kits. They kindly gave me names.

Sushi