Rest periods and can CFS people get really well?

[Kimsie]

@Mij
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!

It is very hard to rest and there are many reasons for this and a lot of them have already been covered in this thread. The ones you mention are very valid. My approach is to look at the actual situation, and see what changes can be made to improve, hopefully without losing anything as far as accomplishments are concerned. This is why I suggest shortening the activity times because if your times are not already too short to shorten any more, then it is a change that can bring improvement without increasing cost in terms of accomplishment.

Even sitting is an activity time, so a particular person might think they are already resting when they sit in a recliner with a laptop, but they aren't, and maybe they can look at the laptop for 10 minutes and then put it down, close their eyes and relax for 10 minutes. Trying to make it practical is part of the challenge.

I am sure that some people really will not be able to implement this idea, but on the other hand there are probably some people who might think they can't do anything to implement it who could make little changes like this to improve their progress.

 

[Kimsie]

I think that generally a lot of people are skipping my technical explanation, which is fine except there is an important point that I should have put in the top part of my first post that is only in the technical part. So here it is:

Every minute of consecutive activity the ROS (reactive oxygen species or oxidative stress) levels are increasing, so shortening the length of activity with rest breaks gives the body a chance to lower the ROS levels, and decrease oxidative stress without giving up any of your total activity time. (I explain why in the technical section, but you don't have to understand why to put it into practice.)

I hope this helps people to understand the changes I am trying to suggest. I only suggested a lowering of total daily activity time for people who already have a fairly large block of time, such as 4-6 hours of activity a day.

 

[taniaaust1]

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?

When one is sick to the point I are (I can only do 1-1.5 hrs of physical activity (on feet activity a day) on my better days, my worst days I can do nothing at all, I cant even walk to a toilet). Its impossible to break up many of my life activities in this manner you suggest. Im going into aerobic threshold just with 1 min of standing (and it can cause the dysautonomia I get due to the ME to hit dangerous levels with my BP).

eg I have gov paid home support 5 hrs per week. During the time my support workers are here (They come twice a week for two hours at the most as I get far too sick with just having a person around me longer then that). The government disability services also expect me to be helping as much as I can!! They do not understand at all me having to rest before Im actually sick to the point Im actually looking ill or collapsed (as it is the states gov disability service refuses to believe ME/CFS is a disability illness or a disability so I only get gov support for having "Aspergers" instead).

This often leaves me over excerting myself and gives me no chance to pace how I shoud be pacing due to this I have no chance at all at getting better and consistantly slowly are just getting worst..

My current routine goes eg
Tuesday ..they come and take me shopping in a wheelchair (I collapse in the shops overwise and cant get back up again so need the wheelchair). I do nothing else that day except get dressed. I dont do dinner that night. This shopping trip can be the only time I get out of my house in a week (so a social thing for me too.. I get to "see" people doing their shopping etc. I get to say "thanks" to a checkout person).

Wednesday..I spend all day resting getting over Tuesday.

Thursday or Monday are days I have either a friend coming to help for a couple of hours or an medical appointment to go to. Im doing one medical appointment per week, that's all I can manage (and that runs me down and often over exerts me) and have currently over 3mths of specialists Im under to see (for all the issues the ME/CFS has caused).

My friend doesnt always come and is often away for up to 6 weeks as he's also a support person for his mother. I couldnt have him come and see me for a short time this week as I had two appointments (one the person came to see me in my home).

Friday my support worker comes again (I dont last out the full 2hrs they are here and often in bed before they leave.. I do rest between doing physical things while they are here)..

Sat/Sun I have to spend all weekend resting (not doing anything physical at all). By Sunday afternoon.. Im only just getting over having a support worker here on Friday.

I have to base what Im doing on when people are coming to help and one cant take breaks in the middle of medical appointments either and as I said, Im expected to be trying to help while they are. Im way over doing it currently even with not doing my dishes, being pushed in a wheelchair with shopping, never doing vaccumming or washing floors, I dont make my bed etc etc. I dont even often cook my meals (hence often going without meals). I cant do so on the 4 days a week I have people come here to help.

I could easily loose all my home support services if they deemed me to be being "lazy" and this over pushing myself is causing me to regularly have to be ambulance to hospital, sometimes once a fortnight as Ive collapsed and cant get back up (and then have to be taken to hospital for a drip to stabilise my body and my BP and ME dysautonomia issues). Ive ended up in hospital due to over doing things sooo much this year.
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If I paced how you said in your original post, that would make me extremely sick.

I once tried the doing physical stuff for every 15mins in an hour (I tried it as I saw it was a recommendation from a ME/CFS specialist) and I couldnt continue at that rate at all, it wasnt enough rest time for me. I was sick with symptoms flaring after about 2.5hours of doing that. (I lasted only 3 lots of doing 15mins of activity each hour). So I lasted doing ONLY 45mins in broken down time before I was sick to the point Id over done it (and only had done half of what I would of usually been able to do in a 24hr period!! I need far more rest time to doing time then that.

I was far more capable with the way I usually pace by going how I feel at the time and knowing what not to go over.. knowing my baseline. (thats the most important thing to know..where ones baseline is.. how much can a person do in a 24hr period regularly without getting sick).

My daily baseline * was only 60-90 mins of physical activity (on a good day without making myself sick) eg showering, cooking a meal etc in one day. and then making sure one doesnt go over doing that amount of activity in a 24 hr period. (* Note Im not at all refering to when I was sicker with this but refering to a point I was at for a few years and was slowly improving with (but this time with supplements too! I had a MTHFR mutation I had to treat too this time) before I moved house and forced to over do as all my gear was in boxes etc so I was constantly having to look for necessariy items, which crashed me down again and since then Im constantly over doing just to live.

No amount of carefully planned pacing rest to activity time will work if the person is going over their daily ME/CFS limit! This is the situation Im currently in.

Ive found that one has to have consideration for "several day periods" not just a 24hr period as sometimes ARE different to others due to something in life happening which one may not have been able to change (as in my case where Im having to do things when home support workers are here to help) or other things going wrong.

I plan things now according to 3-4 day periods.. I know my "normal" limits for a day if in a non crashed state, I know my limits for 2 day periods and will plan accordingly eg that is why I rest all Wednesdays as I know if I do anything on this third day after doing things on Monday and Tuesday (thou its very limited what I do do those days).. I will crash if I do things on that Wednesday, third days running.. so I never do things 3 days straight.

Anyway.. what I found is what pacing you are suggesting did not work at all for me as its not enough rest in my case. I know (before everything went wrong with my home support).. I used to be do 60-90 mins daily (I'd still be doing that if my routine wasnt working around support workers and doctors visits which is dictating some when and when I cant rest). I used to tend to do it by just doing activities tilll I started to feel tired, then rest.. then do some more etc.. till I reached the time I know I was safe for (daily limit time). I found this works better for me then having set amounts per hour to do. (but I also watch a clock to make sure I dont do too much during one hit.. eg I used to do my activity in 20mins block..

Then at least an hour and a half rest in between (i dont seem to rest well in 45 min period and I think that is why the doing something for 15mins didnt work at all well for me and I got sick quicker then I usualy do so ended up doing even less). My body needs more time to rest after activity then that.
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There is also the complication of ones physical activity limit may be way different to ones mental activity limit and one needs to understand both limits as both can crash one. So once has two limits to consider depending on the activity. eg Im fine talking constantly face to face with a person for one hour (that's sitting or half laying with my legs up). Going over that.. even 10 mins over it, can have me start crashing.

Yesterday I talked at my home appointment for 1hr 20min till my brain got to shut down point where I could no longer read or answer the persons questions and had to head for bed. Once again, one cant do an on and off thing with another when someone is having an appointment. **just imagine a person at an appointment going "hold on, we've talked for 15mins, now you need to be quiet for 45mins till we can talk again". Its not workable.. often we are having to deal with other people or do things which cant be broken up in this way.. eg a shopping trip.. you cant go and lay down after 15mins!

At the end of my appointment, I then couldnt even read to check to see if she'd filled my answers correctly on the form she was filling out for me. Which sucked! (any way yet another case of me having to over do as others cant keep coming back!). She's going to post me a photocopy of it so I can read it.

Things like this drop ones physical limits the rest of that day eg as I said I was in bed yesterday for nearly all the rest of the day and night due to this (didnt come to PR due to it as my brain needed "rest" and I was physically wiped from that). One has to consider mental excertions as far as the next day or two goes too if one wants to make sure one isnt going over limits.

(I often alternative been physical exertion and mental exertion.. can be giving one a rest while allowing the other to recharge a bit again... and then also doing bed rest when needed if possible). Swapping activities in this way allows me to stay busier during a day so I dont have to spend so much time in bed.

One can rest some from physical stuff by sitting or laying activities as long as one isnt over doing those. There needs to be a good balance. There should thou also be complete "time out" periods of just total rest.

Anyway, the sicker someone is.. the longer the rest times between the activities needs to be and the person still may need this lengthy time rest whether they've done 10 mins of activity or 20... (I say this based on my own experiences).

The most important thing Ive found is knowing ones daily limits or limits with certain groupings of activities and staying below them... a clock can be used to time eg when I go to my counsellor appointment, we now make sure we dont talk more then 1hr! Im okay after if I keep within that limit. Going 20mins over, caused me symptoms I hadnt had in ages. (my decline happens very suddenly too and can happen without much warning..so knowing the limits for certain activities in my case is quite important).

 

[Kimsie]

taniaaust1, I can see that you are in a difficult position. I think I didn't make it clear enough in my first post that I was not suggesting that people have to keep their rest periods down to 10 minutes, far from it. My idea was to try to get people to shorten the length of their active periods if they could. Of course one can't always do that. I don't want to shorten anyone's rest periods. From your post I don't see any way for you to shorten your active periods unless someone gives you more help.

I am afraid that I have trouble making myself clear, probably because I am always have so much to say at once.

 

[taniaaust1]

taniaaust1, I can see that you are in a difficult position. I think I didn't make it clear enough in my first post that I was not suggesting that people have to keep their rest periods down to 10 minutes, far from it. My idea was to try to get people to shorten the length of their active periods if they could. Of course one can't always do that. I don't want to shorten anyone's rest periods. From your post I don't see any way for you to shorten your active periods unless someone gives you more help.

I am afraid that I have trouble making myself clear, probably because I am always have so much to say at once.

Sorry If I confused your post, I seem to have confused you too as I didnt mention or even think you were saying for people to keep their rest times down to 10mins (I did thou think you were trying to specifiy times so thanks for pointing out that you werent). I thought I saw in your post you saying people should try doing 15mins of activity to 45mins of rest. So lspecifying set amounts.. (that really wont work well for many. .people need to rest for as much as they need to do and that is important).

Irronically Ive seen ME/CFS specialist (it was one I actually respected) suggest what I thought you were saying and that truely was worst in my case.
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There are many people with ME/CFS still trying to do things like hold part time jobs as they havent been able to get onto disability yet. None of these can pace in the way of rest to activity each hour and have no choice but to go home on weekends and crash trying to recover. I wish everyone had the choice of pacing like they know is needed or however they think may help them. Lots of people dont eg those with very young children are another group who usually cant.. while others may not have understanding partners to fill in the gaps to allow them to drop their activity levels to a point where pacing good may help improve them.

 

[duncan]

You asked me which of my symptoms may not be explained by your theory. I have no idea. I think lots of proposed causes may be symptoms themselves. But let's see: Severe bilateral Vestibular damage, brain atrophy, multiple brain foci, paresis, across-the-board cognitive decline, peripheral neuropathy, arthralgias, joint pain, headaches, and yes, extreme -sigh - fatigue.

Kimsie, will this work for MS patients? People hit with the stomach flue? Parkinson's? ALS?

You see where I am going with this? Mito dysfunction may in and of itself be a symptom. I think, too, by focusing on that contrived (by US govt) feint of fatigue, you may be missing the bigger picture.

Regardless, I admire that you have thought this out so well. The risk of being too skeptical a person such as I is that you miss the real deal when it comes along. Yours may be it, and I hope it is.

 

[Mij]

@Gingergrrl I understand not doing anything because you are too sick, we don't have a choice do we? What I was trying say was to stop and rest even when you feel you are able to do more, ie clean etc. I read a book many years ago (there was no internet back then) by William Collinge and it was advised to only do 50% of what you think you can, THAT alone was the best advice to give someone with ME! I only realized this after trial and error. It takes so much discipline and patience. I think living alone may have been a blessing in disguise because I didn't have to make conversation- I got complete rest. Thiis is most important within the first few years of illness so you are in a good position of remission and possible cure with treatments despite how ill you are now.

I wanted to add that there is ME and there is atypical ME, I was told by an ME specialist that I had atypical ME and that my chances (back then) of recovery was very high but I ddin't take his advice to not overdo.

 

[Kimsie]

Sorry If I confused your post, I seem to have confused you too as I didnt mention or even think you were saying for people to keep their rest times down to 10mins (I did thou think you were trying to specifiy times so thanks for pointing out that you werent). I thought I saw in your post you saying people should try doing 15mins of activity to 45mins of rest. So lspecifying set amounts.. (that really wont work well for many. .people need to rest for as much as they need to do and that is important).

Irronically Ive seen ME/CFS specialist (it was one I actually respected) suggest what I thought you were saying and that truely was worst in my case.
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What I was trying to get across was just the concept of more rest than a person feels like they need, as well as breaking up their activity time if they can. I just gave the example because I felt that people might think that 15 minutes of rest every two hours was plenty, and I think that is far from ideal. I think I said 10 minutes on and 10 minutes of rest, or something like that. Not 45 minutes of rest for 15 minutes of activity, although that might be good for some people.

 

[adreno]

@Kimsie

I think your advice about resting is great. Wouldn't it also help to take antioxidants, in order to counter the ROS?

 

[Kimsie]

You asked me which of my symptoms may not be explained by your theory. I have no idea. I think lots of proposed causes may be symptoms themselves. But let's see: Severe bilateral Vestibular damage, brain atrophy, multiple brain foci, paresis, across-the-board cognitive decline, peripheral neuropathy, arthralgias, joint pain, headaches, and yes, extreme -sigh - fatigue.

Let me focus on the brain atrophy and cognitive decline. I have to get technical here and there are 2 main points.

1. The production of norepinephrine is low because:
a. iron-sulfur clusters are involved in heme production
b. succinyl-CoA availability may be low due to inhibition of alpha-ketogutarate dehydrogenase due to a low NAD/NADH ratio and high H2O2 levels.
c. heme is required for catalase synthesis
d. catalase is required for dopamine beta-hydroxylase, which changes dopamine to norepinephrine
e. B6 is often being pulled into the folate cycle for the SHMT enzyme because the folate cycle can be an alternate ATP source, and B6 is required for heme synthesis. This is what happens to my son with depression.

Norepinephrine helps regulate inflammation in the brain.

2. Lowered B6 (see e. above) availability affects the function of aminotransferases, which are required for the correct amino acid availability to neurons. The person doesn't even have to test low in B6. When the folate cycle is being used for ATP recycling, the available B6 gets sucked into the folate cycle because ATP is such a high priority. This is my own idea based on my experience with my son who has problems with depression and it would take too long for this post to tell all the reasons why I think it is so.

If you want more references for some of these statements, I can give them, but I get the feeling that no one looks at my references.This is very brief but I talk about all these things in more depth in other posts.

Kimsie, will this work for MS patients? People hit with the stomach flue? Parkinson's? ALS?

I think this rest protocol will work for all the illnesses found to be linked to a high cysteine/sulfate ratio in this study. Some of them, such as depression, can most likely be caused by other factors in addition to the people who have depression caused by mitochondrial failure, and in that case would not respond. My take on why the cysteine/sulfate ratio is affected is that iron-sulfur clusters are required in the synthesis of the molybdenum cofactor, which in turn is required for the sulfite oxidase enzyme, so as long as the iron-sulfur clusters are affected, this ratio will be high.

This is also why, after having thought about it more since last night, I stand by my original statement that CFS can be cured if the person is able to rest enough, and continues to rest until the iron-sulfur clusters are no longer affected. This cysteine/sulfate ratio will tell us when we have reached that point (when labs make it available); there will be no need to raise activity levels to test to see if a person is still crashing, which is counterproductive. This blood test will show when the person is well. With CFS, all the symptoms will be gone before the iron-sulfur clusters are healed, this is what is called "remission" and the person is susceptible to relapse, because they don't continue with the resting treatment until the iron-sulfur clusters are normal.

But if a test for the cysteine/sufate ratio were available from labs, and it would be if enough doctors started requesting it, then people could be tested and treated before they got neurological symptoms of MS or Alzheimer's (which wasn't on the test, but I am sure is caused by this problem in the mitochondria), and it would be clear which people had depression which was caused in this way.

You can see that not only ME/CFS, but MS, Fibro, psychosis (which might be sometimes caused by other things, but in my son with schizophrenia I am sure it is caused by this), and RA are among the illnesses connected with the high cysteine/sulfate ratio. The same people who did this study tested people with ALS in a separate study and found that they do not have a high cysteine/sulfate ratio so this protocol would probably not help them.

You see where I am going with this? Mito dysfunction may in and of itself be a symptom. I think, too, by focusing on that contrived (by US govt) feint of fatigue, you may be missing the bigger picture.

I was not focusing on fatigue. I never even mentioned fatigue in my first post. I said there are problems with energy and ATP production, which can exist without fatigue. Lots of people with this mitochondrial failure have no fatigue ever, including my son with schizophrenia, and they all have trouble with ATP production because the electron transport chain is inhibited. When the cysteine/sulfate ratio starts being used as a common lab test, there will be objective proof that ME/CFS sufferers can give to the government.

 

[Kimsie]

@Kimsie

I think your advice about resting is great. Wouldn't it also help to take antioxidants, in order to counter the ROS?

Absolutely. In fact, this is the area I am planning to study more today.

 

[lansbergen]

@Kimsie You adress two important aspects of the disease. That is a good starting point and I appreciate what you are trying to do but there is more to it.

 

[Kimsie]

@Kimsie You adress two important aspects of the disease. That is a good starting point and I appreciate what you are trying to do but there is more to it.

I know it is hard to believe, but I really think that the underlying cause is the inhibition of the ETC by damage to the iron-sulfur clusters by NO and H2O2, and all the things caused by the Cascade of enzyme inhibitions that fall like dominoes from that underlying cause will clear up when the underlying cause is dealt with.

Just saying "There is more to it," is really not enough to convince me that I am wrong. I would be happy to admit that I am wrong if you can give me logical reasons explaining why my reasoning is wrong, but just saying "There is more to it," isn't enough.

 

[lansbergen]

I know it is hard to believe, but I really think that the underlying cause is the inhibition of the ETC by damage to the iron-sulfur clusters by NO and H2O2, and all the things caused by the Cascade of enzyme inhibitions that fall like dominoes from that underlying cause will clear up when the underlying cause is dealt with.

Just saying "There is more to it," is really not enough to convince me that I am wrong. I would be happy to admit that I am wrong if you can give me logical reasons explaining why my reasoning is wrong, but just saying "There is more to it," isn't enough.

You can believe whatever you want but I say in my case the underlying cause is an infection for which there is still no test.

 

[Kimsie]

I think it usually starts with an infection. In the case of my sons it was the EBV.

If you still have the infection then yes, indeed, the infection has to be dealt with, too, because the body uses ROS or reactive oxygen species such as nitric oxide to fight infection. Another possibility is that your body can't fight the infection because of the mitochondrial failure. In either case resting would help, if you can rest more than you already do.

 

[adreno]

Absolutely. In fact, this is the area I am planning to study more today.

Regarding antioxidants. It looks like lipoic acid will reduce NADPH. It is common with antioxidants? I guess the same goes for Q10 (and anything that has to be reduced), unless you take ubiquinol. However, it feels like ubiquinone does give me energy. So now I'm confused whether antioxidants are good or bad for ME/CFS.

 

[lansbergen]

I think it usually starts with an infection. In the case of my sons it was the EBV.

If you still have the infection then yes, indeed, the infection has to be dealt with, too, because the body uses ROS or reactive oxygen species such as nitric oxide to fight infection. Another possibility is that your body can't fight the infection because of the mitochondrial failure. In either case resting would help, if you can rest more than you already do.

I know how to deal with it. I have improved a lot.

You can not treat an chronic infection for which there is no known treatment. I use an immune modulator.

 

[Mij]

@adreno since you are knowledgeable on this topic. I read a while back that antioxidants can not distinguish between radicals with a beneficial physiological role and those that cause oxidative damage to biomolecules.
So I'm of the understanding that we can go into an "antioxidative" stress response which makes it more difficult to fight infections.

Antioxidants are dose dependent, no? More is not necessarly better.

 

[adreno]

Antioxidants are dose dependent, no? More is not necessarly better.

Yes, but is any LA or Q10 good, if they reduce NADPH? Or does the anti ROS effect negate the anti NADPH effect?

 

[Gingergrrl]

I wanted to add that there is ME and there is atypical ME, I was told by an ME specialist that I had atypical ME and that my chances (back then) of recovery was very high but I ddin't take his advice to not overdo.

@Mij Can you explain what you or your doctor meant by this? What is atypical ME? I have not heard this term before.