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Rest periods and can CFS people get really well?

Discussion in 'General ME/CFS Discussion' started by Kimsie, Dec 15, 2014.

  1. Kimsie

    Kimsie Senior Member

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    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.
    Proton motive force dollars.jpg
    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.
    ROS activity levels.jpg
    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.
     
    Last edited: Dec 19, 2014
  2. minkeygirl

    minkeygirl But I Look So Good.

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    I think at this point the word "cure" is still a pipe dream. Remission maybe.
     
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  3. ahmo

    ahmo Senior Member

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    @Kimsie I haven't yet digested the scientific aspects of your post. It will become another tab in my open window of things I must review As Soon As I Have Enough Energy! thank you so much.

    This is exactly where I find myself in the moment. I believe it's been low dose naltrexone that has made it possible for me to do so much activity in the world. And the need came over the past 4 weeks to care for DH in extremis. And now I see myself looking over the precipice. I'm just on the verge of having done too much. This week I'm finally able to spend the time I need in bed. Not a moment too soon. A crash is just lurking if I fail to heed the signs.
     
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  4. Kimsie

    Kimsie Senior Member

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    Thanks, ahmo. I hope you get a lot of rest this week.

    I understand where you are coming from, minkeygirl. I looked at some of your posts and I assume from what you said in them that you have not been able to read and understand the technical explanation of my reasoning. I hope that will not stop you from considering trying to implement my suggestion of breaking up your activity periods with periods of total rest, if you can, even if you don't believe that a cure is possible.

    I hope no one here is bothered too much that I think a cure is possible for CFS. I get this kind of negative feedback all the time when I talk, or post on websites, about helping my son with schizophrenia with supplements, and I just don't buy it. And I know that if I can ever succeed in really curing him so he doesn't even need supplements that a lot of people will say, '"Well, then he must not have really had schizophrenia in the first place," even though he has had it for 10 years and everyone who is close to him knows that he has it. (But he lost most of his friends years ago because hardly anyone wants to be friends with someone with schizophrenia.)

    Kim
     
  5. Gingergrrl

    Gingergrrl Senior Member

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    @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?
     
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  6. Mij

    Mij Senior Member

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    @Kimsie I think your hypothesis may have worked for me during the first 6yrs of illness. If I would have continued to REST when I was feeling improvement and not exercise or keep overdoing, I might have reached a level where I could have gone into possible remission.

    Unfortuneately, many years later I have done permanent damage with all the exericsing, and although I have improved I will never go back to where I was. It's too late for some of us.
     
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  7. Kimsie

    Kimsie Senior Member

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    This is what makes resting so very difficult. I really feel for all of you.

    However, I believe that by shortening the activity sessions and interspersing complete rest periods, many people will be able to improve without lowering their total activity time each day, as long as they don't increase their total activity time when they feel themselves getting better. If they can hold to the original time without increasing it, they should be able to get better and better, but it is hard to keep resting so much when you can feel that you are getting better. This is why it is so hard to get well.

    Plus you would have to really relax during the rest periods and not be thinking about all the things you need to do. That's really hard.

    I feel that if I can just get someone to try this, and Mary is going to try to move in this direction, plus I have a friend who's daughter has CFS and Fibro, and I think she will be willing to try it, then if they have success I think it will make it easier for other people to be willing to sacrifice some activity time now for a payback in wellness later. Wouldn't that make it easier, if you knew it would work? But it will probably take many weeks or even months before we have really definite results because when people are really sick, at first the progress will be slow.
     
  8. Kimsie

    Kimsie Senior Member

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    Mij, That may be true that it is too late for you, but maybe it isn't true. How much of a window of activity do you have each day? How long are you up at a time, including just sitting? Maybe there is something to work with.

    Also there may still be some supplements that could help boost the TCA cycle, but you really have to use that extra energy you get from them for rest and healing and not activity or you will end up in a worse place. Have you already used D-ribose? What about coconut oil? Niacinamide? Malic acid?

    There is no doubt in my mind that these ideas will work faster and easier for a person who's window is wider. A small window makes everything harder, but don't give up hope. I think that exercise and overdoing narrows the window making it harder and harder to escape, but I don't see that it necessarily does permanent damage, in the case of CFS, unless there is actual nerve damage, such as is seen in Alzheimer's. It seems to me that the problem with severely affected people with CFS is that their electron transport chain is very inhibited and I think there is reason to believe that can be helped.

    Kim
     
    Last edited: Dec 15, 2014
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  9. duncan

    duncan Senior Member

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    This is a cool theory. I have to point out, however, that depleted energy is only one symptom of ME/CFS, and for some, not even the most debilitating.
     
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  10. Mij

    Mij Senior Member

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    The most difficult part of resting is forcing yourself to just do nothing, mentally too. I've learnt to do this. You're correct, we need extra energy to heal, we can't keep maxing out what reserve we've saved up. My ME specialist advised me 22yrs ago to do nothing when I start to feel better, I remember leaving his office laughing to myself, "yeah right" I didn't listen only because I didn't understand the illness at that time.

    I'm not sure what you are saying though when you say when people are very sick, if someone is very sick it's advised not to try anything. For me it took YEARS. not weeks or month to really know if I was making any progress.
     
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  11. taniaaust1

    taniaaust1

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    It becomes easily to do if one accepts where one is at and what one NEEDS to do or needs to try to get well. I had no choice but to try it and do it.

    I was forced into doing "aggressive rest therapy" as its often called, as over time I learnt the very hard way that what I was doing wasnt making me any better at all and I just got worst. That's huge incentive to make even hard changes which are aweful at the time. (I started doing all this just after I started improving from being bedbound for 9mths (comatose for up to 3 days at a time at times) and having no choice but for my 9-10? year old child to be looking after me as I couldnt even walk. I was so sick that for several months I was only awake about 30mins in a day, which was when I was eatting and drinking and then falling asleep again. I was really out of it.

    So there came my inspiration for aggressive rest therapy as soon as I started to see slight signs of improvement after 9mths of being bedridden (I still bedbound at that point).

    I had to put aside what I WANTED to be trying to do to doing what I NEEDED to be doing so I had at least a chance of improving and didnt get worst again (hence risk going back to the comatose state, or sometimes paralysed state at times, cant handle light, cant handle movement or sound point again). I started to improve "a little" but forced myself to keep staying in bed telling myself I was buildin up my energy and health.. as much as after 9mths being able to do anything at all, I forced myself to stay in bed buidling up energy and strength. I kept improving.

    I only started getting out of bed when it wasnt a push to do so and could do so without a crash and for very very short periods at first. eg get up to fill my water jug but that was it at first. (before that my children had to even do that, they had to empty my potty, they had to do everything. I couldnt walk to a toilet).

    I held strong on the thought of "do not do anything to crash" and then hopefully I'd get better.

    I imagined my health of being like a line .. from bottom, unconsciousness, unaware ME/CFS state a state I was often in when I was bedbound.. to a gradual increase to full health and over years worked on getting my health up that line.. very very slowly, trying aways to never over do and cause a crash and hence decline.. always basing my activity level on how much I could regularly do without a crash (I did increase my activity according to my health, I think that is important as long as you arent causing crashes or health declines in symptoms. If you've had increased symptoms, you've probably done too much!)

    5-7 years later (I forget now exactly how long it was) I was in full remission (till years later when I caught another virus). Im lucky.. Ive heard of people like I was dying with this illness (I would of died if my child hadnt been looking after me, thanks to abandonment by doctors) but I made a full remission.

    So yeah I think this stuff can work if a person can pull it off (I cant currently do any aggressive rest therapy as I dont have enough help and have no one to help me enough, so are slowly getting worst instead of better over time). Lots of others will be in same boat, not able to cut back any more...anyone who has severe ME who is alone dealing with it, will be in this boat where they are over extending themselves just to survive.

    Some thou may have things they need to treat before this will work eg infections or whatever.
     
    Last edited: Dec 15, 2014
  12. taniaaust1

    taniaaust1

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    Aggressive rest therapy has been a common ME/CFS method in improving, some of us have had full remissions with this. The thing thou is some of the things you said cant be set into stone as we are all at different levels with this illness so there is no rate which suits all, I'll go into that in another post

    Also one should be increasing their activity time was they get better. One can really feel when that is happening. Exercise even if just walking or non aerobic, IS good for people as long as it isnt worsening their health in anyway at all so the person needs to be very carefully monitoring how they are going (dont trust you will remember how you were 3 weeks ago! The mind can also play things down..so journal things). . Too much time in bed can cause medical problems eg leg clots and other issues.

    Monitoring is best done with having it all written down and one has to try a level of activity out for at least 2-3 weeks to know if its going to slowly cause a decline or cause issues. Monitoring needs to be that long as one can be having such a slow decline it may not be noticable before then. Once one has found the amount of rest one needs to stay stable.. one needs to take the physical activity level back even more to allow "healing rest time".

    I do agree that its very important to be physically doing things at a level ones body can handle daily, which also allows ones body energy or whatever else it needs to heal. I agree that many dont allow this extra rest for themselves to go towards that.
    .............

    To your two questions. Can we get well? Yes I believe IF we are able to go about it in a way to avoid crashing and have some spare energy to heal and if we are doing whatever else which needs doing in our case (some may have to avoid also certain foods or do other things). I believe Yes.

    Can we be cured? I believe no at that this point of time. My experience has shown me that even if we became well with a 100% remission, we are still at high risk of getting ME/CFS back... all it may take is to catch another virus!! be in a car accident, have a vaccination or whatever.. if the wrong trigger point comes up again. You can find yourself back to square one with having to deal with ME/CFS all over again.

    You will always be vulnerable to this illness, there IS SOMETHING VERY WRONG WITH OUR BODIES.... which allow this to happen and till they know what, I dont think we can be "cured" we can only have "remission.
     
    Last edited: Dec 15, 2014
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  13. Kimsie

    Kimsie Senior Member

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    I am pretty sure that all of the symptoms of ME/CFS can be attributed to the inhibition of the electron transport chain, directly or indirectly down the line of affected enzymes. This is why there are so many rather diverse illnesses that are caused by mitochondrial failure.

    Why don't you give me a couple of symptoms that you think aren't caused by inhibition of the electron transport chain and I will tell you how they can be connected.
     
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  14. Kimsie

    Kimsie Senior Member

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    By not to try anything do you mean that very sick people shouldn't try having shorter periods of activity with complete rest in between? That's what I was saying they should try.
     
  15. lansbergen

    lansbergen Senior Member

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    When even turning over in bed is to much there is no room for activity.
     
  16. Kimsie

    Kimsie Senior Member

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    taniaaust1, thanks for sharing your story. You really illustrated the point that when a person is very ill it is very, very difficult to get well, but not impossible. This also illustrates the point that when you have a virus, you have to rest more than you think you need to, because viruses can start this vicious cycle. Epstein Barr Virus is what started it in my sons, even though they have different symptoms.

    Is there any way that you can break up your activity time with rest, or do you not really have any activity time?
     
  17. Mij

    Mij Senior Member

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    When I was very ill and disabled I did nothing- no activity. I had to hire someone to cook and clean. I believe doing nothing was a big part of the reason I improved back then, the problem was that when I felt better I did too much and didn't give myseltf adequate rest (total rest) in between.
     
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  18. Kimsie

    Kimsie Senior Member

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    I'm not trying to set anything in stone, except that increasing activity too soon is counterproductive, and crashing is also counterproductive. For the rest I am just trying to introduce the concept of decreasing the length of the activity sessions and interspersing them with complete rest sessions. I gave the 10 minute time to show that shorter is better, but I know that often does not work out.
    Keep in mind that I was directing this mainly at people who have at least a 3 hour activity window, not bedridden people. I think 3 hours of activity divided through the day will avoid blood clots, etc. People who are at that level will have a tendency to raise their activity level too soon and that is what I am warning against. I am not saying they have to stay there forever. I don't think that they can just tell when they should increase, you said yourself that you had to hold yourself back.

    I think that when a person is at not less than 3 hours of activity a day, they can safely stay at that level of activity for an extended time, such as perhaps 4 months, without increasing, to allow for faster healing. If a person keeps testing to see how high they can go on activity without declining, they will progress more slowly.
    yes.
    .............

    I agree that a person will always be at risk from anything that causes oxidative stress, such as the things you mention. I think they were already at that risk before they got sick the first time, because they have the genetic tendency. Maybe my idea of cured is the same thing as your idea of remisission. By cured I mean having no symptoms without needing special diets or supplements. You would always need to have extra rest at times of stress.

    However, I am not completely convinced that there are not some people who are in "remission" who could become more well by continuing the rest periods for a time after they seem to be completely well. It might be that "remission" is just "almost well" and if they go a step farther they will not be so susceptible to relapse.
     
  19. Kimsie

    Kimsie Senior Member

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    That is a very difficult place to be in. Of course you are right, if a person has no activity, they can't break it up into smaller amounts. In those cases there may be supplements that may help to raise the energy level, but maybe only complete rest all the time will help.

    I feel for those who are not able to be active at all, and when they are able to be active, I think the principles of rest apply, but this thread is mainly directed at people who are able to have some daily activity, even if it is only a couple of hours.

    I hear you. I know that people with CFS often have their voices fall on deaf ears. I understand that some of you are not able to be active at all, and some have periods where they can't be active, and worst of all you have people who don't believe that you are really ill, but I am not one of those people.
     
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  20. Gingergrrl

    Gingergrrl Senior Member

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    @Mij The only time that I literally did nothing but rest for six weeks was when I had mono b/c I was so incredibly ill and had high fever for three straight weeks. I had no choice but to rest (although I did go to doctors appt and twice to the ER b/c of dehydration and a suspected abcess on my tonsil that was almost cutting off my breathing.) I barely ate anything but soup and liquids and did zero cleaning. I was single at that time and put myself into complete isolation as I did not want anyone to get sick from me (and no one did.) My parents took care of my dog for six weeks as I was too ill to care for her.

    But now it is impossible to rest at that same level as I am (thankfully) not as ill and I am now married and have a husband and step daughter and have responsibilities that have to get taken care of. I can still only walk a few feet and use a wheelchair when we go out but it is very hard not to do some level of activity within the home as there are so many things that need to get done. I do a tiny, minute fraction of my former life but if I stayed in bed all day long by myself, I would get very lonely and depressed and feel like all my muscles would atrophy beyond what they already have. I already had to give up my career which I had built up for 16 yrs and is now over.

    I like your idea but not sure if it is realistic? ETA: I meant @Kimsie (not Mij) re: the idea. Sorry if my post got confusing!
     
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