Naviaux et. al.: Metabolic features of chronic fatigue syndrome

[voner]

They even make a speculative stab at directions for treatment..

....Incremental improve-ments in NADPH production could theoretically be supported by interventions directed at folate, B12, glycine, and serine pools, and B6 metabolism (SI Appendix, Fig. S6), however the safety and efficacy of these manipulations have not yet been tested in a rigorously designed clinical trial. Ultimately, effective treatments for CFS are likely to be achieved by careful attention to nutrition, metabolism, triggers, stressors, and physical activity as an integrated system, combined with a systems biological understanding of the triggers of the CDR (7) and dauer entry and exit (35)...

 

[M Paine]

I really hope this finding leads to a new name for this disease state. I note that the authors have used the term dauer in reference to the hypometabolic state... I hope the term catches on, at least to describe hypometabolic state. Much better than fatigue.

dauer entry and exit

 

[alex3619]

They even make a speculative stab at directions for treatment..

"however the safety and efficacy of these manipulations have not yet been tested in a rigorously designed clinical trial"

This might be more important than it is under normal circumstances, and its normally very very important. If this is right we are dealing with deep metabolic and genetic issues that are beyond any prior expertise in medicine. That implies caution is mandatory, which will clash with our huge need for solutions as soon as possible.

 

[alex3619]

I really hope this finding leads to a new name for this disease state. I note that the authors have used the term dauer in reference to the hypometabolic state... I hope the term catches on, at least to describe hypometabolic state. Much better than fatigue.

We could have dauer disease. Oops, DD, an apparel size. Hmm, how about it being called Dour Disease by critics. We could hope for a typo and Bauer Disease, for anyone who liked 24 and wants to pretend we are heroes. Oops, BD, maybe not. How about Chronic Hypometabolic State? Similar letters and would steal from CFS some of its thunder ... or get (in)conveniently confused with CFS.

I do think this could lead to a name change. I think that will hasten the world waking up to what has happened and is still happening to so many of us.

Do, however, be prepared for many of us to be rediagnosed to something else entirely.

 

[dreampop]

Ultimately, effective treatments for CFS are likely to be achieved by careful attention to nutrition, metabolism, triggers, stressors, and physical activity as an integrated system

I know its too early to say, but this part worries me since everyone is already doing their best to avoid allergens/triggers, (orthostatic intolerance), eat perfectly, and of course no one can eliminate stress completely from their life, though many of us tried. I do all of the above, and am still as sick as I always was. So I guess i just have to learn to exit Dauer. Friendly nematodes come help! Tell me how.

 

[dreampop]

I don't think its grounds for a name change b/c the pathology is not defined in this paper, only the final metabolic state. If its found CFS is the only disease with a "Dauer" metabolic state, then I guess it would be ok. Also, I'm not sure if the hypo metabolic state explains the symptoms, maybe someone can tell me if they think it does or does not. Also, if it explains the brainstem abnormalities and the OI? If the hypometabolic state explains the sympoms, doesn't that completely reject the psychogenic conversion hypothesis?

Nonetheless, this is cool and good and we should fight harder against the NIH now that we have this new finding.

 

[Never Give Up]

The decrease in plasma purines in CFS is consistent with decreased synthesis and/or turnover (flux) of ATP and GTP and decreased reserve capacity caused in part by a generalized decrease in the ability to restore high-energy phosphate stores after exertion.

Did you see that? ...a generalized decrease in the ability to restore high-energy phosphate stores after exertion.

PEM.

 

[Kati]

Do, however, be prepared for many of us to be rediagnosed to something else entirely.

We are still in the very early days (yeah, after 30 some years and more) where NIH will have to admit they need to step it up.

I get worried about the suggestion of controlled nutrition as a treatment (mentioned a couple of comments up)- the last thing we need is to be told the problem can be fixed with a couple vitamins and yet another diet.

The researchers need to add the several layers that complicates things further: gene expression, blood-brain-barrier, brain abnormalities, co-morbidities (POTS), auto-antibodies, viral reactivation, NK cells, etc.

 

[alex3619]

We are still in the very early days

Totally. There are undoubtedly still many surprises in store. That is what good scientists live for though.

 

[Sushi]

Flavin Adenine Dinucleotide (FAD) Was Decreased. Plasma FAD was decreased in both males and females with CFS

FAD, or flavin adenine dinucleotide, appears to be low, and so you might expect B vitamin issues and especially problems with lipoic acid and glutathione.

This is something Rich noticed--low FAD. He and Cheney used to collaborate and somewhere in his posts there is also something about a "hibernation" model.

 

[alex3619]

I don't think its grounds for a name change

Yet. As others have said, its early days, and things need validating, and more research needs to be done. Its more that now we might have a direction that might lead to a name change. We have a glimpse of what it might be.

 

[Research 1st]

Ron says this is the best research ever done on ME/CFS and will transform research, diagnosis and treatment. It is consistent with what Ron has been finding with Metabalon data, but Naviaux has analyzed a large number of patients and put it all together into a coherent theory with predictive value. It's amazing and we're so excited that the paper is finally out and we can talk about it. Ron and Naviaux are now collaborating, with funding from OMF, on a big study that will validate these results and add on a genetic component to try to explain variation in metabolites and symptoms. Stay tuned for a statement from Ron tonight or tomorrow! We're going to END ME/CFS!

We need to frame this, print it off, and worship at the Shrine of Dr's Navieux and Ron so we can all keep going.

The best news always comes from trusted sources who are transparent, collaborate with each other and find the same findings, and best of all, keep the patients in the loop.

Thank you for everything you do, there is a God after all.

 

[alex3619]

This is something Rich noticed--low FAD. He and Cheney used to collaborate and somewhere in his posts there is also something about a "hibernation" model.

Remember I said I was talking to people about things related to this in the late 90s to early 2000s? Rich was one of my online debating partners back during the early 2000s. We spent a heck of a lot of time debating different models and biochemistry, along with a few other people. As someone else commented, Rich would have loved to have seen this research. I wish he had.

 

[Sidereal]

Did you see that? ...a generalized decrease in the ability to restore high-energy phosphate stores after exertion.

PEM.

No wonder the PEM state feels like you're bordering on death. Our ability to synthesise purines is low to begin with but exertion rips through what little was there and tips you over into a metabolic crisis.

 

[alex3619]

worship at the Shrine

Well, maybe not. Its more party time than worship time, and there is still a lot of work to do. Science does not rest, though people have to.

 

[Neunistiva]

and of course no one can eliminate stress completely from their life, though many of us tried.

In scientific terms a stressor isn't an annoying boss or a family member, it's anything that causes stress to an organism. It could be a virus or bacteria or exercise....

 

[alex3619]

In scientific terms a stressor isn't an annoying boss or a family member, it's anything that causes stress to an organism. It could be a virus or bacteria or exercise....

... or listening to psychobabblers drone on and on and on about things they don't understand?

 

[brenda]

Dr Jack Kruse, a neurosurgeon longevity guru, who l am reading at the moment, advises changing our bodies to a cold adapted state through thermogenesis, which uses what he says is an alternative metabolic state for humans to slow down aging and recover from disease states. I wonder where this fits in?

 

[Research 1st]

Remember I said I was talking to people about things related to this in the late 90s to early 2000s? Rich was one of my online debating partners back during the early 2000s. We spent a heck of a lot of time debating different models and biochemistry, along with a few other people. As someone else commented, Rich would have loved to have seen this research. I wish he had.

It's really tragic how many patients have been lost, and how many years have gone by too for all of us left.

Those in power simply will not listen, until they are forced to listen,(in time the evidence will humiliate them not to act upon novel, replicated findings in those with well described signs of organic ME CFS).

Who would have expected, literally decades would pass with people with their fingers in the ears (na na na naa naa I can't hear you etc etc), not listening to the 'little people' who had ideas, but no power or funding to influence positive change, via research, due to the leviathan scale of the 'system' OCD'ing over BPS theory of CFS (very cost effective).
Hence we've had, and still have CBT GET to alter alleged beliefs in a disease.

Well that only worked out well for the elite few who profited from this, as for us we had to learn science, medicine, politics just to hope that imbibing some kind of knowledge may help us survive.

What an absolute stitch up!

 

[Gingergrrl]

The researchers need to add the several layers that complicates things further: gene expression, blood-brain-barrier, brain abnormalities, co-morbidities (POTS), auto-antibodies, viral reactivation, NK cells, etc.

I agree and it seems like a lot of important factors are missing although I guess this study had one particular focus and other studies will look at those other issues?

Do, however, be prepared for many of us to be rediagnosed to something else entirely.

I suspect this as well and from many PM's with people from this board and other groups, I suspect a group of us will turn out to have autoantibodies or channelopathies that cause POTS, muscle weakness, etc, (either with or without a paraneoplastic syndrome) vs. a metabolic disorder (unless they are the same and we are just using different terms)?

It seems they mention nutrition and avoiding stress but for people with autoantibodies at the core, I am not sure that this would be enough vs. some kind of immunotherapy like IVIG or RTX? I wish I could understand if I (and a group of us) might have a different disease b/c this continues to confuse me so much!