Cort Johnson blogpost - "Recovery Potentially Possible: Naviaux Talks on Chronic Fatigue Syndrome"

[Mary]

I have had this with supplements that work for a week or two and then stop. I keep thinking about something my Grandma used to say "Don't wear your coat indoors or you won't feel the benefit when you go out ".
I think it's something like that. So after a while if you wear your coat indoors you would need two coats when you go out. The body starts to accept a coat indoors as normal and adjusts. I think it's the same with supplements. After a while the body accepts the increased availability and adjusts so that you end up back where you were before. Except you have become dependent on an expensive supplement. Well that's how it's been for me.

I think that's been true for a couple of things for me, that my body adjusts and they no longer seem to make a difference. I like the analogy too about wearing a coat indoors - smart Grandma!

However, there are a couple of things that helped me initially and do keep on helping me, I get worse without them: d-ribose (unfortunately expensive but I do much better with it, have been taking it for 10 years), methylfolate, MB12, B1 and P-5-P (B6). Although none of these make me feel as good as the l-carnitine and NADH did 13 or 14 years ago ......

 

[lansbergen]

Yes if they are hiding something. So what is it?

It is all in the public domain. History showed what made them panic did not happen afterall. That won't stop them to panic again. One US institute and some other research teams are on the right track We all have to wait untill they nave figured it out.

 

[TreePerson]

It is all in the public domain. History showed what made them panic did not happen afterall. That won't stop them to panic again. One US institute and some other research teams are on the right track We all have to wait untill they nave figured it out.

You are being very mysterious! LOL. Which govt are we talking about? British or US? I am in the U.K. I can remember something of a panic about BSE and AIDS. And bird/swine flu. But then again if they panicked about something that didn't happen I'm not sure that's much of a clue. Will you tell us if we guess right?

 

[TreePerson]

I think that's been true for a couple of things for me, that my body adjusts and they no longer seem to make a difference. I like the analogy too about wearing a coat indoors - smart Grandma!

However, there are a couple of things that helped me initially and do keep on helping me, I get worse without them: d-ribose (unfortunately expensive but I do much better with it, have been taking it for 10 years), methylfolate, MB12, B1 and P-5-P (B6). Although none of these make me feel as good as the l-carnitine and NADH did 13 or 14 years ago ......

I am also helped by d ribose. Although I think I've built up a tolerance to that, so I try to cut it down in good phases so that it works better in a crash. I can't seem to tolerate any of the methyl things. Only the bad B12 the one you're not supposed to take! And I think that's the
B6 that I can't cope with either. I am encouraged by the comments suggesting that we all have different pathways adapting to our shut down state. That certainly makes sense of how differently we can react to certain things.

 

[Neunistiva]

I think it is, its that damage from long term ME may not be fully recoverable

I kind of hope Naviaux is right and not you

Naviaux doesn’t believe that the kind of structural damage that occurs in say, multiple sclerosis, has occurred in most cases of chronic fatigue syndrome. Nor has any intrinsic damage occurred to the mitochondria of most people with ME/CFS – a good thing.

...

The fact that the majority of sufferers of ME/CFS probably don’t have physical cellular damage, but instead are caught in a disease state that blocks healing and recovery, is a very hopeful message.

That being said, I am fine with any percentage of improvement. If I could get out of bed to get to the bathroom on my own other people may consider that horribly ill, but my quality of life would already improve drastically.

 

[lansbergen]

You are being very mysterious! LOL. Which govt are we talking about? British or US? I am in the U.K. I can remember something of a panic about BSE and AIDS. And bird/swine flu. But then again if they panicked about something that didn't happen I'm not sure that's much of a clue. Will you tell us if we guess right?

The prediction the zoonose would wipe out the UK population was wrong.

 

[perrier]

The question that has puzzled me about the ' dauer' thesis is: why do folks have such severe sleep dysfunction if they are sort of hibernating,or shutting down. You'd think they would sleep enormously. Yet, I find the opposite. My daughter is unable to sleep, even on klonopin and loramet. Sleeps two to three hours, and is ' wired' but non functional.

 

[Neunistiva]

The question that has puzzled me about the ' dauer' thesis is: why do folks have such severe sleep dysfunction if they are sort of hibernating,or shutting down. You'd think they would sleep enormously. Yet, I find the opposite. My daughter is unable to sleep, even on klonopin and loramet. Sleeps two to three hours, and is ' wired' but non functional.

Two things.

1. Patients are not actually hibernating nor in dauer state. They just have same metabolic signature on molecular level. Doesn't mean on macro scale it will look anything like hibernation or dauer.

Dr. Naviaux expands on that in Q3 on the Q&A thread here on Phoenix Rising.

2. Cort Johnson wrote:

Naviaux stated that because it takes more energy to relax than to react, anxiety, tension and hypersensitivity are likely outcomes of being caught in a low energy state.

 

[perrier]

Two things.

1. Patients are not actually hibernating nor in dauer state. They just have same metabolic signature on molecular level. Doesn't mean on macro scale it will look anything like hibernation or dauer.

Dr. Naviaux expands on that in Q3 on the Q&A thread here on Phoenix Rising.

2. Cort Johnson wrote:

Thanks for pointing this out. Also, for highlighting that it is harder to relax than to react.

 

[alex3619]

I kind of hope Naviaux is right and not you

Me too.

 

[roller]

The prediction the zoonose would wipe out the UK population was wrong.

zoonotic its definitely.
you are looking at little fish, @lansbergen

the truth would have the ppl panic.

 

[justy]

I'm not at all heartened by the idea that each one of us will need a specific targeted intervention. The NHS is never going to go for that. And there is mention by Cort of Fluge and Mella, but surely what they are doing is quite different? and they are using one approach that is working for a group of people to put them in remission.

I'm not really that convinced by this - there is no discussion of the immune system and all that goes wrong there. The idea that we are 'stuck' in a certain state that our bodies need to be convinced out of reminds me of the Amygdala theories of the LP etc and what the psychiatrists believe now.

I don't mind being wrong though, I would happily even submit to CBT if it made me better.

 

[TreePerson]

zoonotic its definitely.
you are looking at little fish, @lansbergen

the truth would have the ppl panic.

Transmission from little fish? Literally?

 

[AndyPR]

Transmission from little fish? Literally?

Well that would explain the variability in severity - the larger the fish that you caught ME from, the more severe the symptoms...

 

[Riley]

And there is mention by Cort of Fluge and Mella, but surely what they are doing is quite different? and they are using one approach that is working for a group of people to put them in remission.

From what I understand, Fluge and Mella are also doing metabolomics studies and have said that their preliminary results align with Naviaux's findings. I believe this is what Cort is referring to.