Questions Answered by Dr. Naviaux

[Basilico]

Here's a potential problem, at least in my eyes: He cannot prove it's not an active infection at play in a significant portion of ME/CFS patients, regardless of whether it's IOM or CCC or ICC criteria, or much lesser diagnostic iterations.

Actually, Ron Davis did prove that CFS is not the result of an infection in the blood. He searched for viral DNA (which is much more precise and accurate than looking for antibodies as most CFS docs are currently doing) and he couldn't find anything significant - the healthy controls actually had slightly more evidence of viral infection than severe CFS patients.

While it is possible that there's an infection that can only be detected in the tissues (or maybe hiding in the vagal nerve), after listening to what he's learned so far, an infection seems unlikely. When he took cells from a severe CFS person and put them in the plasma of a healthy person, those cells behaved like a perfectly healthy cell. So he knows there's a problem with something in the plasma but not in the cells - I don't think this is consistent with a viral infection (which works by highjacking cells).

If you haven't already, you should check out what he said that the CFS symposium at Stanford in August. Here's a link that @Stukindawski posted on another thread with clickable links. So far, I've watched the Naviaux and Ron Davis parts, they are outstandingly informative.

Clickable links to each part of the stream:-
(Click the timestamps to go directly to that point in the video)

Introduction & Welcome: Linda Tannenbaum and Ashley Haugen (00:10)
Opening Remarks: Ron Davis: (00:14)

Morning speakers:
Robert Naviaux: The metabolism of the cell danger response, healing, and ME/CFS (00:18)
Chris Armstrong: ME, metabolism and I (00:38)
Jonas Bergquist: In search of biomarkers revealing pathophysiology in a Swedish ME/CFS patient cohort (00:53)

Maureen Hanson: Probing metabolism in ME/CFS (01:46)
Neil McGregor: Genome-wide analysis & metabolome changes in ME/CFS (02:05)
Alan Light: Gene variants, mitochondria & autoimmunity in ME/CFS (02:21)
Panel discussion: Morning speakers (02:42)

Afternoon speakers:
Baldomero Olivera: A novel source of drugs: the biodiversity of oceans (04:37)
Mario Capecchi: The role of microglia in neuropsychiatric disorders (04:57)
Mark Davis: Is CFS/ME an autoimmune disease? (05:14)

Alain Moreau: New research strategies for decoding ME/CFS to improve diagnosis and treatment (06:06)
Wenzhong Xiao: Big data analysis of patient studies of ME/CFS (06:25)
Ron Davis: Establishing new mechanistic and diagnostic paradigms for ME/CFS (06:44)
Panel discussion: afternoon speakers (07:21)

Closing remarks: (08:03)

 

[duncan]

Actually, Ron Davis did prove that CFS is not the result of an infection in the blood. He searched for viral DNA (which is much more precise and accurate than looking for antibodies as most CFS docs are currently doing) and he couldn't find anything significant - the healthy controls actually had slightly more evidence of viral infection than severe CFS patients.

This does not prove ME/CFS is not the result of an infection in the blood. Obvious exceptions could be - and I emphasize could - Borrelia and certain enteroviruses.

While it is possible that there's an infection that can only be detected in the tissues (or maybe hiding in the vagal nerve), after listening to what he's learned so far, an infection seems unlikely. When he took cells from a severe CFS person and put them in the plasma of a healthy person, those cells behaved like a perfectly healthy cell. So he knows there's a problem with something in the plasma but not in the cells - I don't think this is consistent with a viral infection (which works by highjacking cells).

I think this is a very valid point, and I think it strongly supports an autoimmune etiology. But I fear it may not be a slam dunk, especially if there is a paucity of truly investigative efforts for some potential infectious culprits.

I like Davis's and Naviaux's positions, and I think they may be right. But I still am concerned that they have not disproven an infectious agent is at play for at least a significant subset of pwME.

 

[justy]

Regarding CrowdFunding, Dr. Naviaux has this to say: Thank you for your support. Anyone can “crowd so...urce” their support for our lab at: http://naviauxlab.ucsd.edu/support/
All they need to do is pull out their credit card and make a donation to any of three different projects.
There are strict rules about using commercial crowd-sourcing software at the university. These rules are only recently being expanded to permit some types of software, but not others. It turns out to be more of a regulated space than you might imagine; easy for non-academics, but harder for professors working at the university.

Can you start this as a new thread so people can see it. Im going to make a small donation now. Its better than nothing right?

 

[nandixon]

Actually, Ron Davis did prove that CFS is not the result of an infection in the blood. He searched for viral DNA...

@Basilico, we're still waiting for RNA virus results:

Ron says: ...We have not yet tested the RNA viruses, which we are planning to do. We are developing a test to do this with on a very small sample of blood (remember, we could only get blood once from these severe patients, and we have to be very careful to get as many tests from that as we can). Enteroviruses are RNA viruses.

 

[fingers2022]

If ME is autoimmune, what triggers it?
Why do so many have rapid onset which manifests and feels like an infectious disease?
Why has it appeared say in the last (guess) 60 years and is on the increase?
What would cause the immune system to attack the body? That's evolution fkd up...no?

 

[perrier]

@Basilico, we're still waiting for RNA virus results:

Isn't Chia finding enterovirus in stomach biopsy?

 

[JES]

Isn't Chia finding enterovirus in stomach biopsy?

Yeah he has found, but 20% of the healthy controls in his trial had those enteroviruses in their stomach as well. It would be nice if Naviaux or Davis managed to rule out the role of enteroviruses. I think the problem is that as per Chia's hypothesis, the enterovirus is only seen in the tissue, not in the blood, so blood testing for enteroviruses is not very useful.

 

[Cort]

Yes Chia found enteroviruses in his stomach biopsies There was some question about the veracity of his test which Dr. Chia believes has been resolved but unfortunately no validation studies have been done. The CDC was reportedly doing one a couple of years ago but the results have not been made public so far as I know.

Chia's results are certainly crying out for validation studies.

It should be noted that Dr. Pridgen has found herpesviruses in the digestive tract of FM patients - http://simmaronresearch.com/2014/11/drug-combo-pridgen-antiviral-fibromyalgia-trial-identified-results-available/
and Michael Van Elzakker believes they may have taken up residence in the vagus nerve -
http://simmaronresearch.com/2014/02...on-hypothesis-chronic-fatigue-syndrome-mecfs/

From what I can tell one question is why no evidence is showing up in the blood. From what I've been some researchers believe SOMETHING should show up in the blood even in a "smoldering" or mild infection.

 

[Tally]

If ME is autoimmune, what triggers it?

If I remember correctly from the symposium an infection triggers the production of antibodies and then we have the bad luck that antibodies mistake our own cells for the infectious agent. But Dr. Naviaux said that for his hypothesis trigger is irrelevant.

Why do so many have rapid onset which manifests and feels like an infectious disease?

Because it could be an infectious disease starting the proposed cell-danger response.

Why has it appeared say in the last (guess) 60 years and is on the increase?

We have no indication that either of those is true. Even today with all the modern technology and medicine more than 90% of people are undiagnosed. How could we possibly know how many had it 100 years ago. Might be true, but no way to know.

What would cause the immune system to attack the body? That's evolution fkd up...no?

Here

. Mark Davis explained it really well during symposium.

 

[fingers2022]

@Tally
My immediate conclusion (as I'm running out of years on the planet) is to make my own best guess and to pursue some treatment available to me...ART.
The research above all seems very complex and conjectural.
Adios amigo/a

 

[ljimbo423]

From what I can tell one question is why no evidence is showing up in the blood. From what I've been some researchers believe SOMETHING should show up in the blood even in a "smoldering" or mild infection.

Hi Cort-

Mark Davis said at the symposium, regarding the cd8 clonal expansion that "There's an antigen, almost certainly an antigen triggered event, that is causing them to divide. There could be multiple antigens, but there certainly are some."

This quote is from 5:31 into the symposium. If Mark is right, that might explain what Ron Davis filtered out of the blood or serum of cfs/me patients that was causing the mito dysfunction.

Jim

 

[JES]

@Tally
My immediate conclusion (as I'm running out of years on the planet) is to make my own best guess and to pursue some treatment available to me...ART.
The research above all seems very complex and conjectural.
Adios amigo/a

That's because it's a complex disease. If it weren't it would have been solved long ago. Most of us on this forum have been attempting various "self hacking" methods and tested nearly every drug on the planet, but almost none of us are cured. The only cure to this condition can come from high quality research.

 

[perrier]

I've been checking out where the Suramin is, as I hear it's scarce. Looks like Bayer makes 10,000 ampoules annually, and gives them free of charge to WHO which distributes them to Africa for sleeping sickness. Bayer is doing this on compassionate grounds.

Is Dr Naviaux in possession of this Suramin?

Surely, this nightmare illness deserves compassion too, and surely the Suramin should be available for CFS researchers.

 

[perrier]

I wouldn't trust any information online about any drug's availability, especially in Africa. I contacted to many pharmacies and doctors in Kenya too and they said it is not available from any of their distributors.

Bayer makes 10000 ampoules yearly, and gives it to the WHO.

 

[duncan]

From what I can tell one question is why no evidence is showing up in the blood. From what I've been some researchers believe SOMETHING should show up in the blood even in a "smoldering" or mild infection.

Not necessarily true for late stage Lyme.

I'd be curious to hear what Mark Davis has to say on this point.

 

[fingers2022]

That's because it's a complex disease. If it weren't it would have been solved long ago. Most of us on this forum have been attempting various "self hacking" methods and tested nearly every drug on the planet, but almost none of us are cured. The only cure to this condition can come from high quality research.

In bold - you sure? If so, that in itself could yield some useful data.
Coud we test your (bold) statement with a poll or series of polls? Is that still possible here?
My anecdotal experience, for example with ART, is that many sufferers are (possibly rightly) wary of trying it, whilst others have tried but got worse on it, whilst others have tried and subjectively (although with some objective outcomes) claim some improvement. 'Cured' would certainly be a strong claim, and we'd all be skeptical I'm sure. Perhaps it's the wrong term anyway, perhaps such a state is impssible with ME, only remission or improvement.

 

[Isaiah 58:11]

Thanks very much. Thanks. After reading the responses, the impression I have is that the Suramin will fix the holes in the cells...

I missed something somewhere. Do we actually have a problem with this?

Because if we do, my mind leads me right back to the Staphypan vaccine being used to treat ME. If the vaccine is stimulating our immune system to neutralize pore-forming toxins produced by Staph that would have the same effect as "[fixing] the holes in the cells." That would also explain the mold-avoiders who claim to have been cured of ME - CSM, etc. would probably bind bacterial biotoxins as well. Not to mention that Staphylococcal food poisoning is rather common and would fit with PWME's descriptions of onset. I can only imagine that a long-simmering gastro infection with Staph would lead to all sorts of dysbiosis and abnormal endothelial junctions, which, of course, would lead to cytokine madness and abnormalities in nutrient absorption and utilization.

( my academic background is not science.)

Obviously I am right there with you.

 

[panckage]

This does not look like a cogent scientific basis for trailing suramin to me. I cannot see what autism has to do with ME/CFS.

I can only speak for myself but when I get bad my cognitive symptoms match autism almost exactly. I even get the characteristic repetitive movements

As I recover from these bad times my experience matches exactly the patient testimonials as well. I start to be able to connect ideas in my mind and slowly learn to have have hobbies again. The likeness is astounding to me

I wonder why Naviaux can not do a few ME case studies first. It is an approved drug and it appears to low risk. Are the regulations that strict?

 

[perrier]

I can only speak for myself but when I get bad my cognitive symptoms match autism almost exactly. I even get the characteristic repetitive movements

As I recover from these bad times my experience matches exactly the patient testimonials as well. I start to be able to connect ideas in my mind and slowly learn to have have hobbies again. The likeness is astounding to me

I wonder why Naviaux can not do a few ME case studies first. It is an approved drug and it appears to low risk. Are the regulations that strict?

Well this is my question too. Did Dr Naviaux try the drug on a few ME patients or not?
If he tried on autism, then presumably on compassionate grounds he might have tried on ME.

 

[Kati]

I wonder why Naviaux can not do a few ME case studies first. It is an approved drug and it appears to low risk. Are the regulations that strict?

The 10 case study as proposed is that, the pilot study. It has to be done in a rigorous manner, and it must comply with ethics board and FDA requirements.