Rest periods and can CFS people get really well?

[Kimsie]

I take the folinic form (which also is an active form) for my MTHFR mutation and for me that certainly does help.. where as I find no improvement at all with regular folate form. A specialist put me on the wrong form for many years and it didnt do a thing. Of cause also take something to donate a methyl group (methyl B12) to give it the needed help which I also was on when I was on the wrong folate form.

This is the same fallacy as the folate above. The methyl groups in the methyl B12 pill is completely insignificant. Each molecule of B12 gets used many thousands of times. Which form you take is only important if you have trouble converting it. The body isn't having trouble finding methyl groups, but it might need more folate to have enough for all the reactions it needs to do, especially if the body is using the folate cycle for energy production.

However, the problem with folic acid form of folate is a real one because some people do have trouble converting it, and the unconverted form causes problems.

 

[Kimsie]

I dont know where you got that idea at all that I think that. I dont at all think its environmental in my case thou I do think mold could of played a part in my own and my sisters case (we both were in mold infected houses, I dont know about my other two cousins who never lived together). Hep B vaccination also could of played a part in both my sister and I cases, I had multiple vaccinations of this above the norm as "it didnt take" my body wouldnt produce the antibodies (something which once again points to some kind of immune issue in my case but my other 2 cousins as far as I know wouldnt have had a hep B vaccine)

I think Ive either been passed down throu the family something from the 1950s ME outbreak here or I think there is a genetic weakness passed to me throu my nanna which affects my mitochrondria and/or immune system which predisposes me to whatever ME is.

That could certainly be true.

Its only a fairly recent discovery that mito diseases can be passed down by males alone without a need for a female gene involvement. It was always thought before that only females could pass on mito diseases throu mitochondrial DNA

See http://www.mitocanada.org/about-mitochondrial-disease/how-is-mitochondrial-disease-inherited-2/ but as I said, they've now found not too long ago that something can be passed down just by a male alone re mitochondrial disease so that article is of the old view most know, that there needs to be female involvement for mito disorder to occur.

As a female

Before you said mitochondrial issues, but if by that you mean diseases caused by genetic mutations of the mitochondria then that is different. I don't think people have to have any particular mitochondrial mutations in order to get into a vicious cycle of mitochondrial dysfunction, such as in Alzheimer's and schizophrenia and I believe is true in CFS, but perhaps not for ME.

 

[jann1033]

Sorry, i don't agree mainly since i have done what you stated for 17 years with no lasting benefit. I benefited in that it kept some symptons to a minimum, mainly the flu like sore throat, glands not painful, still swollen, not constantly nauseated,may have had a tad more energy, ie dressed but not necessarily showered most days, if just in sweats and a t shirt.. But its still alive and well and the second i use more energy,intentionally or due to illness,stress, its back with a vengeance. So in my book that isn't even a true remission much less a cure.

 

[Kimsie]

Sorry, i don't agree mainly since i have done what you stated for 17 years with no lasting benefit. I benefited in that it kept some symptons to a minimum, mainly the flu like sore throat, glands not painful, still swollen, not constantly nauseated,may have had a tad more energy, ie dressed but not necessarily showered most days, if just in sweats and a t shirt.. But its still alive and well and the second i use more energy,intentionally or due to illness,stress, its back with a vengeance. So in my book that isn't even a true remission much less a cure.

It's quite likely that frequent rest periods alone will not cure everyone with ME/CFS, and it may very well be that not everyone can be cured at all, and maybe you are one of those people, but I believe that some people with ME/CFS could be cured if they use the rest periods (and supportive supplements) until their cysteine/sulfate ratio is down to not more than 0.12.

The genetics of all people with ME/CFS are not exactly the same. One person might have only the genes for ME/CFS while another person might also have genes to get other problems from mitochondrial failure in addition to ME/CFS. For instance the daughter of a friend of mine has CFS + fibromyalgia, both caused by the same mitochondrial dysfunction. These other problems are likely to make some people's illnesses worse and make it more difficult for them to improve. We might say that these people have ME/CFS+, unless there is already another term used for this concept. Often the + part doesn't even have a name.

That said, I believe that no matter what combination of genes you might have, these rest periods will help you improve, but if a person has other issues, they could need other treatments, too. Most likely everyone with mitochondrial dysfunction can benefit from antioxidants such as B12, vitamin C and E, etc., too.

My guess would be that your mitochondrial dysfunction is so bad that even when you rest you are still using alternative pathways such as glycolysis and the folate cycle rather heavily for ATP recycling, so that even resting, you can't make enough NADPH to have improvement. Do you always have high lactate levels?

 

[Strawberry]

I decided to try this out this last weekend. I had completely exhausted myself taking the garbage out, and needed a rest before taking a shower. I normally would just sit on the couch or sit in bed propped up with pillows, and instead I decided to lay down completely in bed. The heavy "lead in my legs" feeling went away after just 2 or 3 minutes, and after 10 minutes or so I was able to get up to shower. I now see that my "sitting and resting" isn't enough. Sitting never gets the heavy legs feeling to go away. While I feel like a lazy SOB laying in bed during the day, it definitely helped.

 

[Gingergrrl]

@Kimsie I want to ask my doctor about something you mentioned at my appt tomorrow but afraid I really don't grasp it.

What is the cysteine/sulphate ratio measuring in the most basic terms? Is it how well your mitochondria are functioning and how much energy you can produce?

Are CFS doctors familiar with this term and test? If someone got the test and the results were poor, is there an actual treatment (besides resting?)

Thank you in advance!

 

[Kimsie]

Gingergrrl,
I don't think there are very many doctors who are familiar with the cysteine/sulfate ratio. I stumbled upon it during my research about these things because I had already come to the conclusion that sulfite oxidase must be inhibited in these illnesses and I found the Waring study. I suggest that you email the link or bring a copy of this study to your doctor. That what I did with our doctor, and we will be getting the test done as soon as he can get the kits from Genova.

Note that they tested quite a few people with ME and CFS, and their ratios were all high. Tell your doctor that you want to use the reference range from the Waring test, which is 1.2 as the beginning of the high range. Most of the people with ME or CFS in the Waring test came out in the red even with the Genova reference range.

The explanation below isn't very simple, but the simplest way I can say it is that I believe that this ratio shows that the iron-sulfur and/or heme is affected. Since the electron transport chain is dependent on iron-sulfur clusters and heme to transport electrons, so if heme and iron-sulfur clusters are affected, you have a problem with your mitochondria and energy production.

I think there are some other things besides rest that can be done, especially some supplements, but the exact supplements and amounts of supplements would vary for different people. The reason for getting the test is that it is an objective measurement of the health of the iron-sulfur clusters and maybe heme that you can use to monitor your progress, and if you are not making progress, you can work on modifying your protocol accordingly. The part about how the test shows the health of the iron-sulfur clusters in particular is my hypothesis, but Rosemary Waring was the one who suggested that the test be used as a clinical biomarker.

I am convinced that the cysteine/sulfate ratio is high in these illnesses because the sulfite oxidase enzyme is inhibited, which would cause sulfate to be low in relationship to cysteine. I believe that the sulfite oxidase enzyme is inhibited because of two things: 1. the iron-sulfur clusters are damaged by oxidative stress (it is well documented that ROS damages iron-sulfur clusters), and the molybdenum cofactor required by sulfite oxidase is synthesized using iron-sufur clusters and 2. heme synthesis is affected, and sulfite oxidase uses heme. One of the enzymes in the heme pathway is stabilized by iron-sulfur clusters, and there are other ways heme is affected, but you don't have to know what they are.

You probably don't need to tell your doctor all of that, it should probably be enough that the Waring study shows that the cysteine/sulfate ratio is high with ME/CFS, and you would like to have it tested. Also, that test has other things on it relating to oxidative stress, like glutathione levels, so the cysteine/sulfate ratio isn't the only reason for getting it done.

 

[Kimsie]

I decided to try this out this last weekend. I had completely exhausted myself taking the garbage out, and needed a rest before taking a shower. I normally would just sit on the couch or sit in bed propped up with pillows, and instead I decided to lay down completely in bed. The heavy "lead in my legs" feeling went away after just 2 or 3 minutes, and after 10 minutes or so I was able to get up to shower. I now see that my "sitting and resting" isn't enough. Sitting never gets the heavy legs feeling to go away. While I feel like a lazy SOB laying in bed during the day, it definitely helped.

Glad to hear that it helped you. Keep in mind that it takes more energy to sit, even propped up with pillows, than it does laying down relaxing with your eyes closed. If you are going to rest, do it well, not half way.

 

[Gingergrrl]

@Kimsie thank you so much for the link to the Waring study and I read it and just sent the link to my doctor. I have so many other questions for my appt tomorrow that probably will not get to it but this way he can read it and I can ask him about it in the future.

It is very interesting and it sounds like if you can actually get the test kit from Genova, you can figure out how to supplement based on your results. I am very curious to find out if my doctor has used this kit before and if not, am thinking about asking my former naturopath b/c she can usually order those kinds of kits.

Sorry for another basic question, but what does ROS mean? I think I figured out the other terms. I don't have my computer here and harder to find things on my phone! Thanks again.

 

[adreno]

@Gingergrrl

ROS = reactive oxygen species, i.e., free radicals.

 

[Kimsie]

@Kimsie thank you so much for the link to the Waring study and I read it and just sent the link to my doctor. I have so many other questions for my appt tomorrow that probably will not get to it but this way he can read it and I can ask him about it in the future.

It is very interesting and it sounds like if you can actually get the test kit from Genova, you can figure out how to supplement based on your results. I am very curious to find out if my doctor has used this kit before and if not, am thinking about asking my former naturopath b/c she can usually order those kinds of kits.

Sorry for another basic question, but what does ROS mean? I think I figured out the other terms. I don't have my computer here and harder to find things on my phone! Thanks again.

Sorry about that. Adreno explained.

I made an illustration to attempt to show how I believe that the cysteine/sulfate ratio shows how the ETC is affected by iron-sulfur cluster damage. Hopefully it makes things more clear instead of more confusing!
ROS includes H2O2 (hydrogen peroxide) and superoxide (which looks like O-), among other things.

 

[adreno]

How about intensity? It would seem obvious that this has an effect on ROS, as well as duration. I'm sure everyone here would prefer 10min of walking to 5min of running.

 

[adreno]

As an example, this study shows that intensity impacts ROS more than duration:

However, when comparing the results exercise
performed at different intensities TBARS concentrations
were significantly higher immediately after the most
intense exercise (75-80%).
The results achieved in this study show that for the same
volume of total oxygen consumption, exercises of higher intensity
induces elevated oxidative damage, as it was clearly
shown by the superior TBARS concentration.

http://www.researchgate.net/profile..._CONSUMP-_TION/links/004635265a83651d0d000000

 

[taniaaust1]

I decided to try this out this last weekend. I had completely exhausted myself taking the garbage out, and needed a rest before taking a shower. I normally would just sit on the couch or sit in bed propped up with pillows, and instead I decided to lay down completely in bed. The heavy "lead in my legs" feeling went away after just 2 or 3 minutes, and after 10 minutes or so I was able to get up to shower. I now see that my "sitting and resting" isn't enough. Sitting never gets the heavy legs feeling to go away. While I feel like a lazy SOB laying in bed during the day, it definitely helped.

Anyone who has any coexisting OI issues with this is far better off laying then sitting when resting. The heavy in leg feel could be going along with extra blood pooled within the legs due to OI.

 

[Mij]

Yes definitely. I also get some sort of chest and forehead pressue when I'm sitting up for too long, particularly in the mornings. Lying down relieves that..

 

[Kimsie]

As an example, this study shows that intensity impacts ROS more than duration:

http://www.researchgate.net/profile..._CONSUMP-_TION/links/004635265a83651d0d000000

Yes, intensity of activity affects how much ROS is produced. I haven't brought that up because I felt my posts were already complicated enough.

I think the way that this could apply is that as a person is feeling better and better from rest periods, they would be better off keeping their amount of activity time the same for quite a while, but they could increase the intensity of their activity time gradually, keeping their rest periods the same. Most people would do this naturally without thinking much about it. For instance, a person who was spending their activity time sitting would probably start doing more walking, etc.

As a person is feeling better due to having rest periods, they will be able to get rid of more ROS during the rest periods. The most important thing is to keep having those rest periods, because that is when the body will be able to lower the ROS and keep it from spiking too high.

 

[Kimsie]

Anyone who has any coexisting OI issues with this is far better off laying then sitting when resting. The heavy in leg feel could be going along with extra blood pooled within the legs due to OI.

Yes, I think it is pooled blood, too.

Also keep in mind, that when you sit up, your body has to use extra energy not only to use muscles to hold yourself in an upright position, but it takes extra energy to circulate the blood. When you rest, you want to be in a position that uses the least amount of energy so that you can use all available energy to get rid of ROS. This is also part of the reason for resting the brain by letting thoughts drift or trying to focus on a part of the body - thinking or listening takes energy, and your brain also has ROS that it needs to get rid of.

This is why anything that is not lying down with eyes closed and resting the mind, too, is an activity as far as rest periods are concerned. I think some people believe that they are resting when they are not.

 

[Kimsie]

I made another illustration to try to show some aspects of my concept of mitochondrial failure as it stands at this time. Keep in mind that I am not trying to say any particular person has exactly the amounts I show. I am trying to get a concept across and the actual amounts vary with each person. For instance, my son with schizophrenia tests low in lactate, and I have reason to believe that his symptoms are caused by the excessive use of the folate pathway, and how that works together with his genetic mutations. He probably does not use the glycolysis pathway more than a normal person so his blue area would be larger and his pink area smaller compared with most people with CFS, who I believe use the glycolysis pathway heavily, but some people might use both pathways a lot.

By pushing the ETC I mean taking supplements that increase the production of ATP through the TCA cycle and the electron transport chain. This includes anything in the NAD recipe, such as D-ribose and niacinamide or taking NADH as a supplement, and coconut oil, carnitine, etc.

 

[Mij]

@Kimsie "I think the way that this could apply is that as a person is feeling better and better from rest periods, they would be better off keeping their amount of activity time the same for quite a while, but they could increase the intensity of their activity time gradually, keeping their rest periods the same. Most people would do this naturally without thinking much about it. For instance, a person who was spending their activity time sitting would probably start doing more walking, etc."

This can take years to achieve if at all for some. Unfortuneately we do have to think about it because of PEM. PEM comes on even when we CAN do more activity, so it's tricky because it can hit 16hrs to 24hrs to one week later (for some).

 

[Kimsie]

@Kimsie "I think the way that this could apply is that as a person is feeling better and better from rest periods, they would be better off keeping their amount of activity time the same for quite a while, but they could increase the intensity of their activity time gradually, keeping their rest periods the same. Most people would do this naturally without thinking much about it. For instance, a person who was spending their activity time sitting would probably start doing more walking, etc."

This can take years to achieve if at all for some. Unfortuneately we do have to think about it because of PEM. PEM comes on even when we CAN do more activity, so it's tricky because it can hit 16hrs to 24hrs to one week later (for some).

Yes, I am not saying that it is easy or fast.

About PEM: I think that PEM is caused by the effects of lactic acid buildup due to using glycolysis for energy. Taking supplements which push the electron transport chain should help reduce PEM, but at the same time they make it doubly important to be very strict about rest periods, or you will end up getting more damage to the ETC, because increasing energy from the ETC makes more ROS. Supplements that push the electron transport chain are a double edged sword, so you have to be careful.