Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

[lansbergen]

My best guess is its less stuck on than the off button is broken. We need to find that button.

I agree

 

[david1980]

Deep down i've never been a big proponent of the chronic infection hypothesis for CFS/ME. (Although it would be really interesting to see if the 100% verified lyme patients then chronic with it had same results, I doubt it). I think this study is quite conclusive in that regard. We are displaying the OPPOSITE metabolic activity of infection.

After all so many of us treat for chronic lyme and or viral loads with various methods to little to no avail, mostly. The 'success' is see with people in this arena comes from a multi-pronged approach which was mentioned in this study as being thus far the best approach. I think it's far more likely the initial infectious event (or not, just chronic life stress) triggers a process from which the body does not fully 're-set' ?

I know for me pre cfs being super fit health conscious guy at 33 (nutritonoal diplomas etc) never sick with anything I went from doing triathlons and marathons (how common is that btw, people being highly active pre cfs, very) to being bedbound in days, and that was 3 years ago and I felt for the first 2 years I was getting worse. No infection ever discovereddespite lots of testing, borderline Armin Labs elispot +2 for lyme only. Is that test legit though ? I have recovered quite significantly compared to back then but certainly not cured. I'm about a fragile 70% with lingering symptoms. I do not work.

I've been more inclined to believe certain things about CFS in that it is advanced again process (burnout event ?)and that the 'hibernation state' is entered as energy supply is so critically low and we need a lot time to catch up not to mention the actual damage that has been done to the body when this thing kicks off and is then SUSTAINED. I know this is an extreme illness going from super fitness and feeling great to feeling like death is imminent. I also know full recovery is possible. It's complex but refreshing to see such cutting edge research being done..... on this 100% real and 100% physical illness. This is not even 0.1% 'just in my head.' 'give myself a shake.' I hope we all start experimenting with treatments hinted at in the paper. I will.

 

[Effi]

PTSD is less clear. That does baffle me a bit. It is however an acute brain response to overwhelming stimuli, with long term changes to the brain. It is not clear there are long term metabolic changes, but its an intriguing question.

I wasn't surprised to see PTSD mentioned. I'm going from memory here, but I believe Ron Davis has been studying PTSD and the effect of it on cellular level. He described a similar 'shut-down', specifically of the mitochondria, in the bodies of PTSD-patients, which would explain their symptoms. It would be interesting to find out if their metabolic pattern is similar to what they have found in PWME.

 

[Ben H]

Announcement from Dr Naviaux's University lab website:
http://naviauxlab.ucsd.edu/science-item/chronic-fatigue-syndrome-research/



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[A.B.]

I wasn't surprised to see PTSD mentioned. I'm going from memory here, but I believe Ron Davis has been studying PTSD and the effect of it on cellular level. He described a similar 'shut-down', specifically of the mitochondria, in the bodies of PTSD-patients, which would explain their symptoms. It would be interesting to find out if their metabolic pattern is similar to what they have found in PWME.

Ron Davis has studied physical trauma, not PTSD.

 

[Ben H]

Ron Davis has studied physical trauma, not PTSD.

This.

https://med.stanford.edu/profiles/ronald-davis?tab=publications



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[Effi]

Ron Davis has studied physical trauma, not PTSD.

OK, mental note: don't trust my own memory... In this case I have no idea what PTSD has to do with us. But I'm still pretty sure he talked about mitochondria shutting down - I guess it was after physical trauma then? (burn victims?)

 

[A.B.]

OK, mental note: don't trust my own memory... In this case I have no idea what PTSD has to do with us.

I'm not sure either. In terms of lived experience, ME/CFS patients seem to be much closer to autoimmune and neurologic diseases than to depression or PTSD. Especially PTSD seems to have very little in common with ME/CFS. But maybe that is the point: to clearly differentiate between these at metabolic level, convince the skeptics, and move on.

 

[Ben H]

OK, mental note: don't trust my own memory... In this case I have no idea what PTSD has to do with us. But I'm still pretty sure he talked about mitochondria shutting down - I guess it was after physical trauma then? (burn victims?)

That's right @Effi, the mitochondria shutting down was in reference to burn trauma victims.


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[snowathlete]

I think Davis is right about the use of antimicrobials. I had antibiotic treatment for supposed Lyme disease a few years back and all I got for my trouble was more sick. I now have ulcerative colitis to deal with as well as ME and that was directly caused by the antibiotics. Some people have Lyme or some other bacterial infection and the symptoms can look very similar to ME. In those cases, they will get tested, have treatment, and potentially get well again. But most people with ME don't get better on these treatments. It's not just me, these treatments have been dished out to lots of people and if they worked we wouldn't be where we are now.

This treatment failure, along with the lack of evidence for ongoing infection from studies, the fact that we aren't dying much younger than healthy people which you would expect to see if there was a chronic pathogen involved, and other signs such as half of ME patients being effectively immune to cold and flu (which to me suggests our immune system is active and able to fight of invaders in many cases) suggest that there is no chronic infection going on in most cases. I absolutely think that infection can cause ME but it isn't required to explain the results here. That doesn't mean it is ruled out either, but in the absence of evidence, I don't think it's logical to assume a piece of the puzzle exists when it may not.

Under Conclusions:

The study of larger cohorts from diverse geographical areas, and comparison with related medical disorders like depression and posttraumatic stress disorder, will be needed to validate the universality and specificity of these findings.

Why compare specifically with these disorders. Why not compare with MS or other?

There must be a reason these were chosen for comparison. I can speculate but would like to know their reasoning.

Good question. I look forward to hearing the official answer as well. One factor may be that depression and PTSD are conditions that are often misdiagnosed as ME - and perhaps even deliberately muddled together by some people - and therefore being able to distinguish between them on the basis of objective testing would be very useful. I imagine there is some overlap but that ME will look very different as a whole, with the metabolic changes far more broad in comparison. There are probably some interesting organic diseases that could be compared against as well, and perhaps as this might help provide insight into those diseases, funders of research into those diseases might help by providing funds for such comparisons?

 

[cmt12]

OK, mental note: don't trust my own memory... In this case I have no idea what PTSD has to do with us.

I predict that any condition that involves chronic pain or a chronic stress state with no current identifiable cause (PTSD, fibro, Gulf War Syndrome, chronic infection, POTS, chronic migraines, chronic depression, GAD) is going to show similar metabolic results.

BTW, all this stuff about hypometabolism in relation to hibernation, extreme cold, and famine is not relevant to us. By far, the number one most common reason for human beings being stuck in a hypo state (metabolism, adrenals, thyroid) is as a reaction to a hyper state. The hyper state (fight, flight, freeze response) being continuously signaled for is the real culprit.

 

[Sushi]

My best guess is its less stuck on than the off button is broken. We need to find that button.

I think Davis is right about the use of antimicrobials. I had antibiotic treatment for supposed Lyme disease a few years back and all I got for my trouble was more sick....But most people with ME don't get better on these treatments. It's not just me, these treatments have been dished out to lots of people and if they worked we wouldn't be where we are now.

Some of this fits the theory/treatment model being used by Dr. Ty Vincent--the on button being stuck after some kind of a pathogenic assault. He is using low dose immune therapy. It does seem to "un-stick" the button, after finding the most appropriate antigens (to the original assaults), and giving them at low doses.

 

[snowathlete]

BTW, all this stuff about hypometabolism in relation to hibernation, extreme cold, and famine is not relevant to us. By far, the number one most common reason for human beings being stuck in a hypo state (metabolism, adrenals, thyroid) is as a reaction to a hyper state. The hyper state (fight, flight, freeze response) being continuously signaled for is the real culprit.

Wondering what makes you reach that conclusion?
I don't really think our hypometabolism makes sense in true terms as hibernation, as Naviaux points out, humans don't hibernate, but they seem to be saying that the evolutionary mechanism may be the same. The argument I have against it being a reaction to a hyper state is that lots of other people experience hyper states but don't get ME. I do think it might fit with observations that a lot of people who get ME seem to be high performers, hard workers, high level exercisers though.

 

[Groggy Doggy]

I am just the messenger here!

Thank you so much for being the messenger and fielding our questions!!

 

[Ben H]

Thank you so much for being the messenger and fielding our questions!!

Thanks! You are most welcome @Groggy Doggy


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[alex3619]

I have some doubts about that because there is figuratively speaking, an army of patients constantly experimenting with supplements. Most seem to have had some limited success, but everyone is still ill.

What about this phenomenon? We take something, it helps, then it stops working. An active hypometabolic state that is self-correcting would respond this way.

 

[A.B.]

What about this phenomenon? We take something, it helps, then it stops working. An active hypometabolic state that is self-correcting would respond this way.

Thanks for expressing it clearly.

 

[msf]

Deep down i've never been a big proponent of the chronic infection hypothesis for CFS/ME. (Although it would be really interesting to see if the 100% verified lyme patients then chronic with it had same results, I doubt it). I think this study is quite conclusive in that regard. We are displaying the OPPOSITE metabolic activity of infection.

The quote Halycon posted earlier in the thread indicates that Naviaux doesn´t agree with you.

Anyway, I didn´t want to make this thread a re-hash of all the chronic infection threads, I just wanted to point out that, in my opinion, it wasn´t reasonable to draw the conclusion that Davis drew from this study, and that Naviaux´s interpretation was much more reasonable.

 

[msf]

I absolutely think that infection can cause ME but it isn't required to explain the results here. That doesn't mean it is ruled out either, but in the absence of evidence, I don't think it's logical to assume a piece of the puzzle exists when it may not.

No, but it isn´t logical to rule it out either, which is what I felt Prof. Davis was encouraging us to do.

 

[cmt12]

Now that a collective understanding is being reached on the forum that the issue is a signaling problem that is stuck, I want to bring to attention the occurrence of spontaneous remission and relapse that repeats itself in some cases. How are these two things possible? If it is an evolutionary adaptive signal that is for our protection, how could it ever spontaneously shut off and on? How could it both be working correctly and malfunctioning?

This condition is so much more complex than everyone realizes. It requires a complete paradigm shift in order to begin to grasp it. It has to be turned from a two dimensional problem to a three dimensional one, and in order to do that the subconscious mind has to be introduced into the equation.