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Rest periods and can CFS people get really well?

sueami

Senior Member
Messages
270
Location
Front Range Colorado
@Kimsie, i am wondering if youwouldnt mind re summarizing what your research had led you to think are the most likely to be effective mitochondrial antioxidants. i cant read back thru this and other threads right now.

if others know of research backed mito antioxes i would also love to hear that. ahmo posted a great list from dr pall on one of my threads recently.
 

adreno

PR activist
Messages
4,841
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adreno

PR activist
Messages
4,841
And Piracetam:

Thus, we investigated the possible efficacy of piracetam to protect individual complexes of the mitochondrial respiratory chain after treatment with different respiratory chain complex inhibitors. Complexes I, II, and III were protected at concentrations as low as 500
x2009.gif
μm piracetam. A significant protection of complexes IV and V was observed at a concentration of 1000
x2009.gif
μm piracetam.
Piracetam improves mitochondrial dysfunction following oxidative stress
 

Rand56

Senior Member
Messages
675
Location
Myrtle Beach, SC
I have several other ideas for mitochondrial antioxidants, namely idebenone, mitoq, methylene blue and c60

I have some experience with both methylene blue and C60. Keep in mind, I dont believe I have CFS, so take my one measely anecdotal report with a huge grain of salt. I trialed MB years ago, and I am currently taking C60 in olive oil.

As far as the MB, I cannot exactly remember how much I was taking, but it wasn't much at all. Certainly I believe not as high as some of the Peatatarians who follow Ray Peat, because recently it seems that taking MB is the latest craze with these people. People on longecity.com were on to MB "years ago", which made me tempted at the time to atleast trial it.

As far as the MB, and IIRC, after about approx. one week into it, I started to get ocular migraine symptoms <Kaleidescope type visuals which faded away after about 20 minutes> After only a couple of those incidents, I ditched taking it. I never remember getting that type of symptom ever in my life. Strangely enough, one other time long after that, when I tried upping my dose with SJW, I got the same exact symptom. I don't know if there was any similar mechanism in play between these two which brought on this symptom. So there is my anectodal experience..lasted a whopping one week LOL. I wanted to trial it because I had heard it has MAOI properties to possibly help with my depression. I read something recently about what Peat said about it being an MAOI, and atleast according to a response that I read, I would have had to take a much higher amount for it to become an MAOI.

The C60 I started approx. 2 months ago. I learned more about it on longecity and decided to give it a whirl. Dosages with these people seem to be all over the map. I decided to take 4.5 mg's daily. Kept this dosage for approx. a month. I didn't "feel" anything. Seems like this is also the case with a number of people on longecity too. Doesn't mean though it is not doing anything beneficial. On the positive side, being that it is suppose to be liver protective, I noticed that my skin was clearer and a bit softer looking on my face. I'm a 58 year old male and I still on occasion break out with some mild acne. I typically do so after I eat shellfish. Normally if I do, it I will breakout the next day. I ate a bunch of crab one night and I did not even have the slightest of any breakouts. I first started thinking that maybe it was because of the olive oil, but I have taken more olive oil on it's own before in the past and would not see a benefit like this to the skin on my face. So I'm concluding that it might just be that my liver is functioning better...idk...makes sense though.

Just to play it more on the safe side, I backed down on the dosage and am only doing the 4.5 mg's once per week. Also trying to save some bucks by taking it less often.
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
December 19, 2014: I am editing this opening post because the thread is so long newcomers are not able to pick up certain points that keep coming up.

First I want to make clear my main points.

1. I think people with CFS need to shorten the length of their activity times as much as they can down to 15-20 minute sessions followed by 10-15 minutes of total rest - meaning lying down with eyes closed, relaxing all muscles and letting thoughts drift. These amounts of time are not set in stone, but something to work towards. Anything that is not resting is an activity, including sitting in a recliner watching TV or using a laptop. 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. The rest periods allow the body to lower the level of oxidative stress and reduce damage. A shorter activity time stops the ROS levels from building up as high.

2. I think that the cysteine/sulfate blood test will show when a person has gotten back to normal, the Genova oxidative stress analysis test is good but it has the normal reference range too high and I think the reference range from Rosemary Waring;s study should be used instead, with the Genova test. (The normal range in the Waring study is 0.09-0.12.)

If a person raises their activity level too much before the cysteine/sulfate ratio is within Waring's normal range, they will be subject to relapse, but they always raise their activity level too soon, because the symptoms go away before they reach that point and they don't have, or haven't had until now, an objective test to tell when they should raise the activity level.

3. People who have less than a 3 hour window of activity are in a special category, and have more difficulty applying these ideas than people with a 3 or more hour of activity day.

4. People who have 4 hours of activity a day or more can speed up their recovery by having less activity time, but I don't think anyone who is able to have 3 hours of activity should have less than 3 hours of activity, because if possible, we need some activity.

Here is the start of the original opening post:

Can people with CFS get well? I mean really well. Cured. I think that they can, at least those who have a 3 hour window or more of activity. Those with less might be able to still get well, but it would take longer. But to get well you have to do one of the most difficult things ever - you have to rest when you don't feel tired.

I have been thinking a great deal in the past few weeks about ME/CFS and it has been a great help to me in figuring out how to help my 2 sons with depression and schizophrenia, which I think are caused by the same thing that I think causes ME/CFS - mitochondrial dysfunction caused by oxidative stress. I want to thank Mary for sharing with me, the information she gave me has really helped me.

According to my hypothesis, the reason people with ME/CFS never get well is because when they make changes in their protocol which increase their energy, they always use that energy to increase their activity instead of letting their body use it for healing. In other words, they increase their activity much too soon.

I give a technical explanation for this below, but I want to talk about effective rest periods first so that people who aren't interested in the technical parts, or who don't have the energy to try to understand them right now, can read the practical parts first.

I have seen a fair amount of talk about rest periods and how they can help but I think that they would be more effective if the activity time was shortened and broken up more. An ideal would be 10 minutes of activity followed by 10 minutes of total rest - in bed in a quiet darkened room, complete relaxation and just letting the mind drift, not active thinking. The closer a person can get to this ideal the more progress they should make. Of course it is impossible to always follow this, it's just something to reach for. I think a timer would be needed so as not to overdo the activity periods. This is very hard to do, because if you feel like you have energy you don't want to rest.

Crashing is counterproductive and it shows that your protocol needs to be adjusted. A person with CFS should be taking rests all the time whether they feel tired or not. This is the opposite of graded exercise. These might seem like strong statements coming from someone who doesn't have CFS, but I think I have logical reasons to believe that they are true.

I have seen an article where a person would rest for 15 minutes every hour or two and they were able to increase their total daily activity by 50% over a period of 6 months. That's where they made their mistake. If they kept the activity level the same for the whole 6 months they would have made a lot more progress, and maybe even have gotten well (this person started with 6 hours of activity), in my opinion, according to my hypothesis of what causes these illnesses. A lot of people here at PR have a smaller starting window, and it would take longer for them, but if a person keeps their activity level the same, the rate of improvement should increase as time goes on. The explanation is below.
********************************************************************************
This is the technical part, for those who want to skip it. The following is according to my hypothesis of how these illnesses are caused.

The majority of energy in the body is produced by oxidative phosphorylation, which is when the electron transport chain takes electrons and uses the energy it gets from the electrons to move protons into the intermembrane space of the mitochondria, and the ATP synthase enzyme uses the energy to release ATP. This energy of the protons in the intermembrane space can be referred to as the proton motive force. This proton motive force is also used to make NADPH through the NNT enzyme.
View attachment 9251
I show the protons as dollar signs instead of H+ after they move into the intermembrane space because I think of them like money in the bank that you can spend for healing or for activity. (and I am from the USA)

The electron transport chain (ETC) is inhibited because it is full of iron-sulfur clusters, and iron-sulfur clusters are damaged by ROS, or reactive oxygen species, which include nitric oxide (NO) and hydrogen peroxide (H2O2) among others, i.e. oxidative stress. This is why you can't make enough ATP to have a normal life - the ETC is inhibited.

The ETC also produces ROS; this is normal. A healthy person can create enough proton motive force to make ATP and enough NADPH to get rid of the ROS, but a person with CFS can't. There are other pathways to make NADPH in the mitochondria, but NNT is the major one and probably normally produces about 50% of the NADPH.

So we have to keep ROS levels as low as possible to allow the body to produce ETC complexes (those are the ETC enzymes) with fewer damaged iron-sulfur clusters. Every minute of consecutive activity the ROS levels are increasing, and the rest breaks give the body a chance to lower the ROS levels. Long periods of consecutive activity will spike the ROS levels to a more damaging high.
View attachment 9252
Of course this diagram is probably exaggerated, but you get the idea.

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 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.

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.

Total bed rest is unhealthy, so some activity is needed. If a person has a large enough window of activity, they can decrease their activity time somewhat to speed up recovery. A 6 hour activity day could be decreased to 4 hours spread out over the whole day in little increments. If a person is at 3 hours or less, they should probably not decrease their activity, but just try to keep the activity periods very short as much as possible.

There are other things that can be done to increase energy production such as supplements, which I talk about in other posts. The supplements will do no permanent good if the rest periods are not taken seriously.

Very good explanation! i take this very seriously now
Short bursts of a activity followed by lying down rest enables me to do more without crashing
 

sueami

Senior Member
Messages
270
Location
Front Range Colorado
what kimsie is saying though, is dont try to do more. use as much of your energy as you can to let the mitochondria clean up oxidative stress so that the replacement clusters coming online arent immediately damaged. give yourself a month of trying out the rest protocol but only do the most basic of self care activities. i bet you will see a big improvement in energy. and when you do save at least half of that rise in energy for healing more. it likelytakes some months for enough mitochondria to come and stay online to support more"normal" activity levels.
 

Mel9

Senior Member
Messages
995
Location
NSW Australia
Thanks Sueami,

Your extra comments were really helpful to my understanding. My present problem is I am still working. I try to walk as little as possible but cannot stop altogether. I am getting used to the idea that feeling horrible like this is my new 'normal'. I do have long service leave owing me, so might eventually go to bed for a few months and see if I can get better.
 

Hanna

Senior Member
Messages
717
Location
Jerusalem, Israel
@Kimsie, I have thought about one additionnal problem in CFS patients affecting electron chain transport.

- In one study (Hokama Y, Campora CE, Hara C, Kuribayashi T, Le Huynh D, Yabusaki K. Anticardiolipin antibodies in the sera of patients with diagnosed chronic fatigue syndrome. J Clin Lab Anal. 2009;23(4):210-2.), it was found that 95% of CFS patients had cardiolipin antibodies.

- cardiolipin is found in the inner mitochondrial membrane, where it is essential for the optimal function of enzymes involved in mitochondrial energy metabolism (complex III, IV, V) according to wikipedia. Cardiolipin acts as an electron buffer pool to release or absorb protons in order to maintain the PH near the membranes.

What do you think : if someone has chronic cardiolipin antibodies (I do since 1998), no matter the supplements we may add, or the rest periods, it is likely that there is no gain, untill something can be done to suppress those antibodies ?
 

physicsstudent13

Senior Member
Messages
611
Location
US
what is the name of the piracetam injection form? citicholine is also a possible stroke or hypoxia treatment
I keep on taking the piracetam and hoping it will work but I have so many years of hypoxia and low oxygen that it doesn't have that much of an effect.
Acetyl l carnitine+alpha lipoic acid is also supposed to help aging damage of mitochondria. I'm taking ACLAR at 6g a day in powder form
 

Hanna

Senior Member
Messages
717
Location
Jerusalem, Israel
Prof Martin Pall says in one of his videos (posted by ahmo lately - last 20 mn of the video) that phospholipids help restore the oxidized cardiolipin in the inner membrane in the mitochondrion. Maybe supplementing with phosphatidyl choline/serine is key here for those with presence of cardiolipin antibodies.
May try the one proposed by adreno.
 

Hanna

Senior Member
Messages
717
Location
Jerusalem, Israel
I don't know. I've seen a prof of Immunology several months ago, and though those cardiolipin antibodies clearly appear chronically, he said I didn't have any immune problem and I am searching in the wrong direction (have to see a neurologist... who will say the same of course. same circus for 17 years).

I have also positive ANA, anti Scl70 and more, but apparently, not according to a pattern he knows. All those results are positive but not sky-high.
 

physicsstudent13

Senior Member
Messages
611
Location
US
Is the piping rock brand ok for lecithin, I was taking GNC and would guess it's better quality and less fillers
Is it possible to lower immune response as in asthma, people would be cured then if such a treatment existed. I have heard of lowering asthmatic response and treating narrowing airways through paleo diet.
 
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sueami

Senior Member
Messages
270
Location
Front Range Colorado
I feel somewhat obliged, since I have been a big proponent of Kimsie's idea of strict rest, to say that I no longer feel it is the way to heal.

I am healing out of a severe bedbound crash by increasing my activity levels.

The key for me has been what I spend my energy on. I am doing a huge amount of personal growth work, releasing old pain/loss/shame/fear as I feel it arising. I have been meditating for about six weeks. I started it because I knew if I couldn't get on top of my automatic mind and stop trying to do too much (usually housecleaning or chores) I would keep crashing. Mindfulness meditation opened up the floodgates to a bunch of repressed emotions.

This was the start, but what has really been healing me is reconnecting with my joy and doing things that make me happy and feel creative. I've done a ton of work on replacing negative thoughts with positive thoughts (I was pretty crippled by anxiety and panic attacks for several weeks in the depths of the crash -- that's completely gone. I am happy and excited about life now) and activating the parasympathetic system via vagus nerve stimulation, yoga, lovingkindness meditation and breathwork.

The book The Last Best Cure, recommended by my integrative medicine physician, who didn't understand why I wasn't getting better with the excellent rest and nutrition I was getting, has been a pivotal read for me.

Then I started searching for CFS recovery stories on youtube, many of which share a common thread of finding something that connects people to their body or their joy, and following that as they heal. One woman credited Reverse Therapy, which I had run across last year, but didn't pursue. The theory behind it fits very wellwith the emerging science of epigenetics, childhood stress, and biochemistry of stress outlined in Last Best Cure.

I start Reverse Therapy via Skype with a therapist from the UK on Tuesday.

I will report back in great detail on all of this, once my recovery is further along.

Right now I can say that my elevated heart rate is 80 percent resolved. I am up and about for a half hour or so at a time. I don't stand and do chores but I can be on the computer or watch shows with the kids or build a fire in the woodstove or shower.

I've gone out for bloodwork with no repercussions. I'm reading books again, for fun. I am incredibly happy, calm and energized about the future.
 

Hanna

Senior Member
Messages
717
Location
Jerusalem, Israel
@Great Sueami.

I havn't been better since I have done the severe pacing. In fact, before I had a 3 hours window that I have lost now. I don't say this is directly linked to my new pacing-therapy (20mn activity, 10-15 mn lying down). But I think that monitoring puts more stress on doby/mind, and appears counterproductive for me.
In the same period I had ABX treatments for bugs that had some bad side-effects, so there are clearly numerous causes to my regression.

I have not been able for a few weeks to do my daily meditations, Qi-Gong etc, continue to do some positive thinking, though nothing works now.
 

sueami

Senior Member
Messages
270
Location
Front Range Colorado
@Hanna, I'm sorry to hear that. You can get that back, I firmly believe that now. If you can read Last Best Cure I highly recommend it. Written by a science journalist with 17 different chronic, severe autoimmune conditions who spent a year exploring the mind-body connection and adopting the practices that had the most hard science behind their ability to shift the body from a sympathetic fight or flight overactivation to a more balanced, less inflammatory state.

She experienced huge improvements in her symptoms.

If you like, msg me and I will email you a copy of the Reverse Therapy book. It makes the case for how constant rest is detrimental and what the body is really wanting from us. RT has about an 80 percent success rate, though that is skewed a bit because people who try it are already open to making changes in their psyche and open to being more connected with the messages from the non-brain parts of our nervous system.
 
Messages
15,786
Written by a science journalist with 17 different chronic, severe autoimmune conditions who spent a year exploring the mind-body connection and adopting the practices that had the most hard science behind their ability to shift the body from a sympathetic fight or flight overactivation to a more balanced, less inflammatory state.
How on earth is "over-activation" supposed to result in inflammation? And I'm fairly sure that medical science has yet to prove that the "mind-body connection" can be used to improve biological illness.
If you like, msg me and I will email you a copy of the Reverse Therapy book. It makes the case for how constant rest is detrimental and what the body is really wanting from us. RT has about an 80 percent success rate, though that is skewed a bit because people who try it are already open to making changes in their psyche and open to being more connected with the messages from the non-brain parts of our nervous system.
Could you explain how this ties in with ME/CFS patients becoming well? Because it sounds like a bunch of psychobabble, with an implication that people who don't try this sort of unscientific feel-good approach are closed-minded.
 

sueami

Senior Member
Messages
270
Location
Front Range Colorado
yeah, I kind of figured that would be the response. feel free to check out the book.

iwillcheck back in in a month to update on how i am progressing.