Rest periods and can CFS people get really well?

[Kimsie]

@Kimsie do you mean three hours of straight activity or three hours split throughout the day? Are you saying three hours should be the goal?

I am struggling more with just eating and drinking right now and having weird episodes that are different than PEM and either dehydration or not eating enough?

No, no. I am not giving any particular amount of time as a goal. I am trying to get across some principles that people can try to implement in their own way. I try to give examples of how someone might be able to implement the ideas, but they are examples, I am not saying any particular person should do it exactly that way.

People who have less of a window will have a harder time implementing the ideas. Each little change can make an improvement, but small changes will take longer to see the improvement. Even with larger changes, I wouldn't expect to see any improvement at all for at least a week or maybe two. The worse off a person is, the smaller the changes and the improvement will be. But if you can keep improving even a tiny bit you are going in the right direction.

I mean any amount of time that can be split up into smaller amounts of consecutive activity time.

One principle is that a shorter amount of activity before complete rest will be less damaging than a longer one. So if a person plans to spend 1/2 hour on a task, doing the task for 15 minutes and then resting completely for 15 minutes and then doing the task for 15 minutes is better then doing 1/2 hour together.

In your case, I don't know if it is possible for you to break up your tasks more than you do, but think of sitting as a task. So you sit on the couch for 15 minutes, then you lie down for 15 minutes and relax completely and empty your mind, then you sit for a while again. Maybe this doesn't apply, but I am trying to show that you start with your actual activities, and think of how you can modify them to break the activity up with rest.

People who drive themselves places more than 5 or 10 minutes away should leave early so that they can lay the seat back and rest before they do what they went to do, assuming they are in a place where it is safe to do that.

If you are having trouble with dehydration and nutrition, this is a different problem and you have to find a way to get those nutrients.

Another principle is that as long as a person who is seeing improvement does not raise their activity level, their improvement should be exponential, with a faster rate of improvement as time goes by. Increasing activity will slow or stop the improvement.

 

[Kimsie]

@Mary I read the article but not sure how it applies to me as it seems the people they quoted can travel or go on walks or even exercise (and then alternate these activities with rest.) I am nowhere near that level and get short of breath walking across the room. I still cannot lift anything over my head, carry anything, bend down to pick things up, etc, and am almost positive now that I have orthostatic intolerance.

I don't take long naps b/c I am not actually sleepy or tired (on most days) and most of my worst symptoms are autonomic dysfunction. Even when I sleep for 9-10 hours straight, as soon as I stand up to brush my teeth or put my meds together, I am short of breath. So if I added 15 min of rest, I am not sure how it would help my particular case? I also don't know what NAGPH is?

I don't mean to sound negative and I like the idea but if I rested any more, I would not be able to spend any time with my family (which is already limited) or prepare for a trip to see my cfs MD. I am finding that increasing fluids and electrolytes along with magnesium are more helpful to me than resting b/c when I sleep too long, I get dehydrated and lately this includes getting really shaky, dizzy, and in most severe state, severe tachycardia.

I think the orthostatic hypotension might be cause by low norepinephrine, which is what gives my son depression, but he doesn't have hypotension. I have explained in other threads, but the pathway that makes heme and catalase is affected, and that affects norepinephrine production.

Do you remember your dreams? Do you take a lot of folate? Have you ever had your B6 tested (but you don't have to be low in B6 for the B6 to get drained by folate, in our experience.) Do you take any B6? I don't want to explain all about this because I don't think you have the energy to learn about all the pathways involved right now.

Taking BCAA's with B12 would probably give you a temporary help with the hypotension, if that is what is causing those symptoms. Maybe glycine, too, if you tolerate it. These would help you make more norepinephrine.

NADPH recycles glutathione, and so it helps get rid of ROS. That's the most important thing to know about it.

Keep taking those fluids.

 

[taniaaust1]

This is something I would have to think about. Do you have any tests showing that your SOD2 is depleted? What is SOD2 dislocation? Does it escape from the mitochondria? I can't find this on the web. Tell me some more, if you don't mind.

If the SOD2 is depleted then the only thing I can think of off the top of my head is manganese supplementation.

If you look at my gene results under my post you see I have a SOD2 mutation.. does anyone know if that would deplete SOD2? (whatever that is). Kimsie do you think mangnanese could help me due to having a SOD2 mutation?

 

[taniaaust1]

Gingergrrl - you don't sound negative. I think Kim was referring to people like me - I can manage 3 to 4 hours of light activity a day. So usually my day ends at noon or 1:00 and I do nothing, except maybe light cooking, the rest of the day/evening. So if I broke up my morning activities with plenty of resting, my day would lengthen because of rest periods and also I'd probably crash less and eventually would be able to do more. But your case is quite different than mine.

Have you had testing like Nutreval done? Something that measures amino acids and everything? Nutreval testing revealed some important irregularities for me, like low leucine and glycine, and copper, among other things. It might be helpful for you if you haven't done it already.

With 3-4hrs of light activity but having a day which is ending at 1pm, you do sound like a person who spacing things out and resting more in between things would help.

 

[taniaaust1]

The worse off a person is, the smaller the changes and the improvement will be.

I personally do agree with that based on my own experiences.. the sicker one is, the smaller the improvements will be (they may be soo tiny at first they are hardly noticable) but the more weller one gets, the greater leap in improvement from there. When I reach the point in which I was 70-75% well, I very quickly recovered from there.

[quote} People who drive themselves places more than 5 or 10 minutes away should leave early so that they can lay the seat back and rest before they do what they went to do, assuming they are in a place where it is safe to do that. [/quote]

I personally find it near impossible to rest well in a car with this illness. Cause of that and I did need to stop and rest back when I was still able to drive and driving trips to my specialists in the city (it was a 50min drive to get there), I ended up buying a panel van so I could rest properly on a mattress in the back, pillows, etc in the back. I actually ahd to sleep rest at times in the car to do that trip. Its the only way to really be able to rest properly in a car. Resting in a car may sound easy to a not sick person but to us, its usually real, real uncomfortable (unless one does what i did).

If you are having trouble with dehydration and nutrition, this is a different problem and you have to find a way to get those nutrients.

I think most of us do end up with some food issues with this illness. One study found that 50% of us had fructose intollerance, lactose intollerance is more common in us too. One can take years to end up finding out one also has food issues or nutritional issues too.

Does the fact that most of us develop food issues fit into your theory??

Due to the ME/CFS I developed problems to milk protein I think it was (it wasnt to the lactose), food intollerance to cashews, peanuts, coffee, artifical sweeters

. I also developed hyperinsulinema so are on a very low carb diet (but maybe that was due to my PCOS).

Last year at over 40 years old I had my first severe food allergy reaction where my lips swelled right up and my tongue and mouth and throat was affected, I have an epi-pen now.

 

[nandixon]

This is why the cysteine/sulfate test is needed so badly. It will be an objective blood test which can lend support to the fact that the person with CFS has a real illness, and the illness isn't caused by being out of shape or lazy or anything like that. When we can prove that some people have to have total bed rest to improve, and the government will save a lot of money by giving it to them (bed rest) so that they will be able to do things for themselves later, they will be more likely to give people the help they need. (Many people are not so bad off that they need total bed rest, I think taniaaust is in that state at this point, from what she says.)

The plasma cysteine/sulfate ratio is available as part of this test:
https://www.gdx.net/product/oxidative-stress-analysis-2-test-blood

 

[Kimsie]

If you look at my gene results under my post you see I have a SOD2 mutation.. does anyone know if that would deplete SOD2? (whatever that is). Kimsie do you think mangnanese could help me due to having a SOD2 mutation?

A little manganese might help, but don't take too much because taking one metal can throw others off. Have you ever had a RBC mineral panel done? That would show if you had a problem with low manganese.

I have ++ on SOD2 rs4880 and ++ on rs2758331 myself.

I think that unless you have had a test showing you have problems with your SOD2 then it probably isn't that much of an issue. I assume that you were normal for quite a number of years before you got sick. I mean, you haven't been sickly since you were a young child, have you? You had the SOD2 mutation before you got sick. It might have contributed to your getting sick, but it isn't the main thing, in my opinion.

 

[ukxmrv]

Is there any explanation @Kimsie for the morning/afternoon split to my day and the difference in functioning therein?

In the mornings my activities need to be very low and most of my time either in bed or lying on the sofa. If I was (for example) to try to walk out of my home to the shop or to bathe or cook a large meal then the rest of my day would be one of severe weakness in the body and with a mind unable to think straight.

However, if I rest in the morning with little of physical or mental activity (just things like feeding myself lightly, going to the loo and some light concentrating activities) then my afternoons lead to better physical functioning and I am able to swap to things like balancing cheque account, paying bills, having a bath, mending clothes and if a very good day very light housework etc for a few hours. Every few days if I am careful I could leave my home for a short time.

Just as a p.s. in the 80's we used to do what we called ART or aggressive rest therapy. The way it worked was that the patient stayed in bed or on the sofa and only did the minimum that she could. Then is until, she was a little stronger and could undertake any light household activities as she could before. This could be for day or weeks. I still use this if I have been forced into doing something like a doctors appointment and have bad PEM after,

 

[Kimsie]

The plasma cysteine/sulfate ratio is available as part of this test:
https://www.gdx.net/product/oxidative-stress-analysis-2-test-blood

Thanks! For some reason our ND, who uses Genova for another test, was not aware that they had this ratio.

I notice that their reference range is different than the one from the Waring study. The top of the Waring reference range is the bottom of the Genova reference range, but most of the patients in the Waring study would still have been in the high zone on the Genova study.

 

[Kimsie]

Is there any explanation @Kimsie for the morning/afternoon split to my day and the difference in functioning therein?

In the mornings my activities need to be very low and most of my time either in bed or lying on the sofa. If I was (for example) to try to walk out of my home to the shop or to bathe or cook a large meal then the rest of my day would be one of severe weakness in the body and with a mind unable to think straight.

However, if I rest in the morning with little of physical or mental activity (just things like feeding myself lightly, going to the loo and some light concentrating activities) then my afternoons lead to better physical functioning and I am able to swap to things like balancing cheque account, paying bills, having a bath, mending clothes and if a very good day very light housework etc for a few hours. Every few days if I am careful I could leave my home for a short time.

Just as a p.s. in the 80's we used to do what we called ART or aggressive rest therapy. The way it worked was that the patient stayed in bed or on the sofa and only did the minimum that she could. Then is until, she was a little stronger and could undertake any light household activities as she could before. This could be for day or weeks. I still use this if I have been forced into doing something like a doctors appointment and have bad PEM after,

Do you take any supplements in the morning?

The one thing about the ART is that someone can stay on the sofa or the bed, and not actually have any periods of total rest. I am sure that it was very helpful, though.

 

[Kimsie]

I personally do agree with that based on my own experiences.. the sicker one is, the smaller the improvements will be (they may be soo tiny at first they are hardly noticable) but the more weller one gets, the greater leap in improvement from there. When I reach the point in which I was 70-75% well, I very quickly recovered from there.

I personally find it near impossible to rest well in a car with this illness. Cause of that and I did need to stop and rest back when I was still able to drive and driving trips to my specialists in the city (it was a 50min drive to get there), I ended up buying a panel van so I could rest properly on a mattress in the back, pillows, etc in the back. I actually ahd to sleep rest at times in the car to do that trip. Its the only way to really be able to rest properly in a car. Resting in a car may sound easy to a not sick person but to us, its usually real, real uncomfortable (unless one does what i did).

What you did with the mattress, etc, is the best way. Some people might be able to rest by laying the seat down and having a blanket if it is cold. Needless to say you might need to carry a timer around with you so you don't miss an appointment or something.

I think most of us do end up with some food issues with this illness. One study found that 50% of us had fructose intollerance, lactose intollerance is more common in us too. One can take years to end up finding out one also has food issues or nutritional issues too.

Does the fact that most of us develop food issues fit into your theory??.

Yes, there are a lot of things about my hypothesis that I have not posted about because it gets so complicated and it's hard for most of the people here to wade through my technical explanations.

My son with depression started having issues with food reactions within a few months after he started being sick. I thought that it was because of gut dysbiosis, but now I realize it is because his zinc is being drained. Taking large doses of zinc cures his food reactions, if he lowers his zinc for a couple of days they start up again, but it only takes 3 days of high zinc to get over them. Zinc is not an issue with S, my son with schizophrenia.

There is a problem with heme synthesis for most people with this mitochondrial dysfunction. This is because of a couple of things: H2O2 and a low NAD/NADH ratio both inhibit alpha-ketoglutarate dehydrogenase which makes succinyl-CoA, which is used in the first step of heme synthesis, and for many people, the folate cycle is draining available B6, which is a cofactor in heme synthesis.

I don't know why some people get the problem with the draining of the zinc and others don't, it must be genetic. In orthomolecular theory this is called pyroluria and although I disagree with them that the B6 is drained by the same thing as the zinc, because it is often drained without the zinc being drained (as in my son, S) they have established that the zinc is being drained in the urine, and that it has something to do with heme synthesis.

Due to the ME/CFS I developed problems to milk protein I think it was (it wasnt to the lactose), food intollerance to cashews, peanuts, coffee, artifical sweeters

. I also developed hyperinsulinema so are on a very low carb diet (but maybe that was due to my PCOS).

Last year at over 40 years old I had my first severe food allergy reaction where my lips swelled right up and my tongue and mouth and throat was affected, I have an epi-pen now.

I am afraid that the IGe sensitivity will stay with you forever, but the other ones might go away eventually. Have you had your zinc tested?

According to my hypothesis this mitochondrial dysfunction causes a cascade of enzyme inhibitions, so a variety of systems can be affected depending on the genetics of the individual.

 

[adreno]

Taking large doses of zinc cures his food reactions

How much zinc is that?

 

[Mij]

Do you take any supplements in the morning?

The one thing about the ART is that someone can stay on the sofa or the bed, and not actually have any periods of total rest. I am sure that it was very helpful, though.

There are many of us with POTs or some form of OI and low cortisol- makes mornings the worst time of day. I find resting/lying down in the mornings makes the rest of my day more productive. I can't say total rest does it though. I feel better when I'm horizontal in the mornings. I also avoid showering in the morning as this makes it worse.

 

[Kimsie]

...

Increasing ATP production will lead to increased ROS. I am not sure that if energy is not used it will make much of a difference, due to the dynamics.

Which dynamics are you referring to?

Here is a quote from this study. since this study was done in the 60's I have updated the names of the enzymes.

The NNT activity varies directly with that of NADP dependent isocitrate dehydrogenase, and inversely with the NAD dependent isocitrate dehydrogenase activity.

In other words The NNT activity goes up and down with the NADP dependent isocitrate dehydrogenase activity, and opposite to NAD dependent isocitrate dehydrogenase activity (which is the ATP producing mode).

So to me it looks like when ATP is needed these two pathways, isocitrate dehydrogenase and NNT, switch to the ATP generating modes and when less ATP is needed and more NADPH is needed the NADPH modes become more active.

... So its how much we do, and put demand on the electron transport chain, that matters most.

Isn't that what I have been saying? Except that I add that the rest periods give the body a chance to reduce ROS.

There are other sources of oxidative and nitrosative stress predicted in ME though, including failed NO synthesis leading to peroxynitrite. This ties in to B12 metabolism. Other sources include immunological activity.

Undoubtedly there are other sources of oxidative stress. But this is a cascade of enzyme inhibitions where one problem leads to the next, and if you fix the source of the problems, then the other dysfunctions down the line will be corrected, too.

Increasing NAD (and CoQ10) might indeed improve energy capacity. Its how much of that we use that determines the ROS, not how much ATP is hanging around, from what I see.

I don't understand why you keep saying it isn't how much ATP is hanging around. I never said anything about ATP hanging around, I said how much proton motive force a person has and whether they need to use it for ATP or whether it is available for NADPH synthesis. That is the place where your body has to make a choice.

Once ATP is made the energy stored in the ATP is no longer in the most economical form for NADPH synthesis under these conditions, i.e. there is plenty of NADH and ATP is low. One ATP can buy 1 NADPH in several pathways, but 3 protons can buy either 1 ATP or 3 NADPH. Each NADPH made by the NNT costs one NADH, but with the electron transport chain being inhibited, the NADH/NAD ratio is already high and there is a surplus of NADH. If the ETC was not inhibited, the opposite would be more economical, because 1 NADH can make 3 ATP. The body automatically wants to use the most economical pathway according to the available resources.

...

However, as a caveat to the caveat, what counts is this - does it work? I use my lemon rules as a heuristic simply because reality often trumps theory. Its why science requires testing. For a patient this comes down to trying a protocol to see if it tastes like a lemon or not. Sometimes, even with all the theory, there is no other way available to us to be sure if something works or not.

Resting has certainly helped people with CFS, and breaking the activity up with rest periods, too. My son D is putting this into practice these 2+ weeks while he is on break from school, so we may be able to report on the effects later.

 

[Kimsie]

How much zinc is that?

About 55 mg a day, but split into 2 doses

 

[nandixon]

Morris & Maes suggest some possible causes for the mitochondrial dysfunction seen in ME/CFS in their March 2014 paper:
"Mitochondrial dysfunctions in myalgic encephalomyelitis/chronic fatigue syndrome explained by activated immuno-inflammatory, oxidative and nitrosative stress pathways"
http://www.ncbi.nlm.nih.gov/pubmed/24557875/

Full text is not available yet, it seems. There's also a related paper for which the full text is available:
"Oxidative and Nitrosative Stress and Immune-Inflammatory Pathways in Patients with Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS)"
http://www.ncbi.nlm.nih.gov/pubmed/24669210/

 

[Kimsie]

Update: My son with fatigue and depression has been putting this protocol into practice as much as he can for a little over a week and today he feels remarkably better, with hardly any supplements. Normally if he does not either have high doses of folate (4-5 mg), or the NAD recipe and other supplements to push the ETC, he feels fatigue. If he has high dose folate, he has depression, but not fatigue. The NAD recipe does not work as well as it did at first for the depression, and we have realized that it is only a temporary fix if you use it without the rest periods.

When he is at home he has been trying to adhere to not more than 15-20 minutes of activity followed by not less than 15 minutes of total rest. The first 2 days he was at home most of the day. Then he was gone most of the time for 2 days, but rested more than usual, then the last 4 days he has stayed at home following the protocol and being quite bored. He has been sticking to the protocol quite well, but I can see that it is harder today because he is feeling so good.

I weaned him off of most of his supplements except the multi, B6 and zinc and some antioxidant types such as NAC, vitamin e and C, etc. I stopped giving him niacinamide, but most days I give him glutamine for glutathione synthesis. Yesterday we added high dose B12 because from my research in the last couple of days it looks like B12 might have a mechanism for detoxifying H2O2 that doesn't consume NADPH.

We have been talking about ways he can incorporate rest periods into the hours while he is at school when it starts up again next month (community college).

I realize that since he doesn't have CFS this may not seem to apply, but I really think that the underlying cause of CFS and D's problems are the same.

 

[PennyIA]

I will state that having been through chronic pain in the past and seeing family members fall into the feeling better/overdo/crash cycle... that I have had periods of remission. And during those periods of remission I CAREFULLY monitor and adjust my activity levels and enforce down/rest times. I can't in all good consciousness not do ANYTHING when I'm feeling better - I'm a single mom living with an 11 yr old and he deserves as clean a house as I can provide... which means I have to take care of some things as soon as I am able.

That said - when I'm in remission, I limit my activity dramatically during the first few weeks, and only gradually allow the slightest increase in effort. So, I typically do 15 minutes of cleaning per day as long as I'm not bedridden. I'll spend the first few weeks of remission doing two 15 minutes of cleaning per day. And I will only add more time to it if I don't see any negative impacts. And I won't add any more time until I've been able to sustain the increase in energy for more than a week. From Spring-ish/Summer 2013 until Spring of 2014 was my best remission period yet (thanks, I believe, to methylation treatment) and I was able to take two vacations, I was up to sustaining up to four hours of semi-mild physical activity as well as eight hours of sedate, but up and actively engaged activity (like working at a desk).

My crash? started after a car accident in Spring 2014, and I immediately took to bed again and took it easy, but still ended up bedridden by June of 2014.

I've been slowly starting to recover since August, but am still at the barely able to manage my sedate work-life and only 15 minutes of semi-mild physical activity.

I just can't afford to NOT do the little bit of physical activity I do now, I'd have to be able to qualify for disability, give up my son, and hope for a spot in a long-term care facility. None of that is feasible while I still have doctors, let alone family, questioning my illness.

 

[Unduki]

One of my doctors told me to lay down for 10 minutes every hour. Can't really do that with a bunch of kids to look after but I managed to lay down 4-5 times throughout the day for about a year of concentrated effort. I think it made things easier - not so much overload. Try it, it's basically free if you can manage to work it in.

I consider myself to be in remission. About 4 years ago, I started feeling better after 2 years of Valtrex so I took advantage and started working out. I got strong, lost a bunch of weight and I feel great, mostly. Every now and then I get over fatigued, have a melt down or get that old nausea/dizzy thing but I've only had three actual flares in the last two years. It's like a shadow now instead of the full on illness - and I can do 22 pushups.

 

[Kimsie]

I will state that having been through chronic pain in the past and seeing family members fall into the feeling better/overdo/crash cycle... that I have had periods of remission. And during those periods of remission I CAREFULLY monitor and adjust my activity levels and enforce down/rest times. I can't in all good consciousness not do ANYTHING when I'm feeling better - I'm a single mom living with an 11 yr old and he deserves as clean a house as I can provide... which means I have to take care of some things as soon as I am able.

That said - when I'm in remission, I limit my activity dramatically during the first few weeks, and only gradually allow the slightest increase in effort. So, I typically do 15 minutes of cleaning per day as long as I'm not bedridden. I'll spend the first few weeks of remission doing two 15 minutes of cleaning per day. And I will only add more time to it if I don't see any negative impacts. And I won't add any more time until I've been able to sustain the increase in energy for more than a week. From Spring-ish/Summer 2013 until Spring of 2014 was my best remission period yet (thanks, I believe, to methylation treatment) and I was able to take two vacations, I was up to sustaining up to four hours of semi-mild physical activity as well as eight hours of sedate, but up and actively engaged activity (like working at a desk).

My crash? started after a car accident in Spring 2014, and I immediately took to bed again and took it easy, but still ended up bedridden by June of 2014.

I've been slowly starting to recover since August, but am still at the barely able to manage my sedate work-life and only 15 minutes of semi-mild physical activity.

I just can't afford to NOT do the little bit of physical activity I do now, I'd have to be able to qualify for disability, give up my son, and hope for a spot in a long-term care facility. None of that is feasible while I still have doctors, let alone family, questioning my illness.

I hope you don't think I am trying to convince people not to have any activity. This thread is so long now I think some people are not able to read through the whole thing and I think I need to edit the opening post so that I don't have to keep writing this. It is mainly the length of activity time that I think needs to be changed - it needs to be short with total rest, not sitting in a chair or something like that, afterward before another activity time. Sitting in a chair or on the couch is an activity, not rest.