The new Naviaux study is up! Metabolic features of CFS

Issie

Well-Known Member
Oh forgot, as for the mitro cocktail we took, (some still do).....but most of us went on to other things. That wasn't a fix. I went on to address my immune system. A friend of mine went antiviral route and now is addressing autoimmune system. We both wound up having Lyme. So.....back to --IF the immune system was working right.....we wouldn't have the issues, fatigue or the inflammation, infection, pathogens.....etc. Maybe we inherited a genetic predisposition to having the issues, an inability to correct or balance things out. Whatever tipped us over, flipped the epigenetic switch on.....we have to find the way to switch it to off position. And if it's not an epigenetic change and is a compensatory thing......how do we live in symbiosis with it??????? Is our diet the key? Detox? Parasites, heavy metals, mold, protozoa, virus........what? Is it our genetics and faulty methylation function? That's only one function of many. Deficiency of some sort due to malfunction of one of our pathways.

If we look at our bodies as a living, breathing machine.....we have faulty electrical systems, plumbing problems and we're missing some parts. LOL

Issie
 

Manganus

New Member
So energy production is reduced probably related to mitochondria etc. The hibernation reference doesnt make sense at all as most mecfsers i know ate insomniacs and its mostly only in tbe very early stages of the illness peopletend to sleep alot.

So what are they preposing to fix this issue that hasnt been tried already in cfs?
They are not proposing anything at all.
It's too early.

And the hibernation reference makes huge sense on a cellular level. That's the point. :)
 

Remy

Administrator
I thoughts most cfsers were tired but wired which doesnt make sense to me. Previous research seemed to point at inflammatory cytokines as possible cause of this symptom. The hibernation reference i wish was true as could sleep for several weeks.

I thought it was common knowledge for quite some time our mitochondria are not functioning properly, which i thought they would have an answer for just going by the traffic on this research.

Lets see what they come up with next??
I agree, it's more cellular hibernation rather than actually wanting to sleep all the time. All the toxic metabolites that build up from the cell metabolism not functioning properly could easily disrupt actual sleep.
 

bobby

Well-Known Member
I thoughts most cfsers were tired but wired which doesnt make sense to me. Previous research seemed to point at inflammatory cytokines as possible cause of this symptom. The hibernation reference i wish was true as could sleep for several weeks.
I think the word hibernation got picked up because everybody understands it. But Naviaux himself says that he wouldn't call it hibernation. There seem to be loads of different kinds of hypometabolic states - hibernation is one of them, but is not similar to what happens in CFS.
facebook said:
Q3. You talk about the chemical signature being similar to a state of hibernation. What
sort of animals exhibit a similar signature in hibernation?

Naviaux: I wouldn’t use the term hibernation to describe chronic fatigue syndrome. Humans do not hibernate. Hibernation is just one of a handful of hypometabolic states that has been studied in different animals.

There are many others that go by names like dauer, diapause, torpor, estivation, caloric restriction, etc. Many environmental stresses will trigger hypometabolism in humans. In our experience, the metabolic signature of dauer is more similar to CFS than some of the other hypometabolic states that have been studied.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
But, if it's a compensatory response and has a good reason for being that way......if we try to activate it when it's a protection to us for whatever reason-----we may create much worse issues.

Issie
I'll bet that's what post-exertional malaise is all about but it also suggests that this is a complex process and just throwing treatments in may not be very helpful either.
 

Issie

Well-Known Member
They flat said that the hypometabolism didn't seem to be a result of nutrient deficiency which explains the lack of success in trying to supplement our way out.
Yeah the mitro cocktail didn't work. And I'm rethinking many of the supplements I've been on. May be fighting against what needs to be. I can see me spending less on supplements that don't seem to help any way. You just start to think if your this bad with them.....you may be worse without. But it does have to be broken down by our body and if there is a dysfunction there....we may be taxing ourselves more than needed.

Issie
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Yeah the mitro cocktail didn't work. And I'm rethinking many of the supplements I've been on. May be fighting against what needs to be. I can see me spending less on supplements that don't seem to help any way. You just start to think if your this bad with them.....you may be worse without. But it does have to be broken down by our body and if there is a dysfunction there....we may be taxing ourselves more than needed.

Issie
I'm definitely having trouble with the more ketogenic diet I'm trying...It should be helping my mitochondria but its making me pretty wiggy!
 

Remy

Administrator
I'm definitely having trouble with the more ketogenic diet I'm trying...It should be helping my mitochondria but its making me pretty wiggy!
It takes a while to develop the "machinery" to run on ketones rather than sugar. Hang in there; it's worth it.

The closer you can get to zero carbs a day, the faster you'll convert. You might never fully get there if you don't at least keep to Atkins induction levels (less than 20g/day) for a couple of weeks.
 

Issie

Well-Known Member
I'm definitely having trouble with the more ketogenic diet I'm trying...It should be helping my mitochondria but its making me pretty wiggy!
I can't do the animal proteins and am trying to do a version of it as a grain free, vegan. Very hard to do. I'm told there is a bit of a break in period for your body to convert to using fats vs sugars as its fuel source. But I have to have a certain amount of fruits on my limited restrictive diet. There is no way I can do a full out ketogenic diet. Pay attention to what your body is telling you.

I tried the animal proteins and my kidneys started going out again.

Issie
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
It takes a while to develop the "machinery" to run on ketones rather than sugar. Hang in there; it's worth it.

The closer you can get to zero carbs a day, the faster you'll convert. You might never fully get there if you don't at least keep to Atkins induction levels (less than 20g/day) for a couple of weeks.
I know one thing - I can't do it on fats - I definitely need proteins. I need to figure out where I am on Atkins. I've had times of unusual feelings of stability and then I bounce over to the other side where its difficult to concentrate.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
Yep, I think it is possible that the right supplements can help but I think they have to be targeted to a persons metabolic results. Even then Naviaux says it's not about simply replacing metabolites - it's more about identifying pathways and how they work together and targeting them - if I understood him right since much of flew right over my head. Its' quite complex which is encouraging in a way...he seems to be looking quite a bit deeper than most people.
They flat said that the hypometabolism didn't seem to be a result of nutrient deficiency which explains the lack of success in trying to supplement our way out.
 

Remy

Administrator
I can't do the animal proteins and am trying to do a version of it as a grain free, vegan. Very hard to do. I'm told there is a bit of a break in period for your body to convert to using fats vs sugars as its fuel source. But I have to have a certain amount of fruits on my limited restrictive diet. There is no way I can do a full out ketogenic diet. Pay attention to what your body is telling you.

I tried the animal proteins and my kidneys started going out again.

Issie
I would think you'd have to use ketone salts as a vegan to get anything approximating therapeutic ketosis.
 

Issie

Well-Known Member
I would think you'd have to use ketone salts as a vegan to get anything approximating therapeutic ketosis.
Not sure if I will get there. But, upping my coconut fats and going lower glycemic foods. I might not can get enough protein trying to do this. I think I can stay around 50 carbs....but we will see.

What are ketone salts?
 

IrisRV

Well-Known Member
But that was not how it was reported. They said it compared to hibernation. Anyone watching would have no idea if was the cellular level and even if they did say it no lay person would know what the hell they were talking about. They would think, like I did, that it meant we sleep all day.
Naviaux was very clear that while hibernation is one of a number of hypometabolic states, it is not the hypometabolic state most similar to CFS. He said CFS is closer to the hypometabolic state known as dauer (whatever that is). The media picked up on the word 'hibernation' because they have some sense of what it is while words like 'hypometabolic' and 'dauer' are far over their heads.

Now, if someone could explain dauer to me without talking about larvae and worms, I'd appreciate it.
 

Neunistiva

Member
But that was not how it was reported. They said it compared to hibernation. Anyone watching would have no idea if was the cellular level and even if they did say it no lay person would know what the hell they were talking about. They would think, like I did, that it meant we sleep all day.
MEAction::
"Naviaux’s study in a nutshell states that the cells of ME patients are in a sort of protective hibernation"

Q&A with Dr. Naviaux:
"I wouldn’t use the term hibernation to describe chronic fatigue syndrome. Humans do not hibernate. Hibernation is just one of a handful of hypometabolic states that has been studied in different animals. There are many others that go by names like dauer, diapause, torpor, estivation, caloric restriction, etc. Many environmental stresses will trigger hypometabolism in humans. In our experience, the metabolic signature of dauer is more similar to CFS than some of the other hypometabolic states that have been studied."

mogaznews:
"Now, scientists have shown people with symptoms of the condition have a specific chemical signature in their blood."
"Lead researcher Robert Naviaux said something similar happens when animals dial down their metabolism to hibernate.
And that in CFS, the body may get stuck in this state, leading to chronic pain and disability."

telegraph:
"New research has revealed a chemical signature of the disease in the blood of those with ME. Scientists from the University of California claim it is similar to a state found in nematode worms called dauer, where the metabolism adjusts to a difficult environment by slowing down."
"This hibernation state enables existence, but not much more. ""

eurekaalert:
"...identify and assess targeted metabolites in blood plasma, have identified a characteristic chemical signature for the debilitating ailment and an unexpected underlying biology: It is similar to the state of dauer, and other hypometabolic syndromes like caloric restriction, diapause and hibernation."
 

IrisRV

Well-Known Member
I'm not talking about what he said it meant. I'm talking about what was reported on CBS in a 3 sentence report which made it sound like people with CFS were in a state of hibernation.

I don't know how else to say it.
Fair enough. CBS, like most media, rarely knows what it's actually talking about. They screwed up. IMO, they did us a disservice in likening ME/CFS to hibernation, especially since Naviaux specifically said hibernation was not a good comparison. The day the media reports something complete and accurate about ME/CFS in such a way that it really benefits us, I'll probably fall over in shock.
 

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