Open Medicine Foundation bags Dr Naviaux

[Sasha]

They seem to be getting a lot of good people! Just had this in an email:

OMF welcomes Dr. Robert K. Naviaux, newest Scientific Advisory Board member

We’ve captured the interest–and will now benefit from the experience, knowledge, and skills–of another esteemed scientific expert.

Dr. Robert K. Naviaux has joined our ME/CFS Scientific Advisory Board and is internationally known for his work in human genetics, metabolism, metabolomics, and mitochondrial disease.

Having Dr. Naviaux join our team fits the pattern we set last year: create a scientific advisory board of noted experts in the biology systems that could be contributing to ME/CFS symptoms.

These well-known researchers and doctors bring with them their network of relationships with labs and other scientists–and their knowledge and prestige–so we can move the research from the fringe and shadows into an exciting and respected field. And most of all, get fast results.

Dr. Naviaux is an ideal scientist to add to our esteemed board because of his deep understanding in mitochondrial dysfunctions, virology, tumor immunology, and natural killer cell biology.

Dr. Naviaux runs the Robert Naviaux Laboratory at UC San Diego, which is doing genetic research into mitochondrial dysfunctions. He is founder and co-director of the Mitochondrial and Metabolic Disease Center at UCSD.

Additionally, he is a former president of the Mitochondrial Medicine Society and a founding associate editor of the journal Mitochondrion. He studied biochemistry at Georg-August University in Göttingen, Germany.

Dr. Naviaux discovered the cause and created the diagnostic test for Alpers syndrome, a mitochondrial disease. He also works in oceanographic ecosystems research and is the director of the first FDA-approved clinical trial to study suramin as a treatment for autism.

WELCOME DR. NAVIAUX!

 

[Sidereal]

I read a few of his papers a couple of years back and was impressed.

 

[Kati]

Thank you so much OMI and OMf and welcome to Dr Naviaux!

 

[akrasia]

Last June someone on facebook was helping patients find healthy controls for a study she was participating in


SHARE THIS as widely as possible as the list below is likely to grow and we'll need controls from all over the US. You can volunteer even if you don't match someone below - we may still need you as the list is incomplete.
Based on data already obtained from two other sites, this will be a ground breaking study published by years end. My specialist has seen the early data and says it is "truly spectacular and will change the face of CFS treatment".
He has recruited approx 60 patients, and many of them are having difficulty finding healthy controls of the same gender, within 5 years of their age, and within a 200 mile radius geographically.
"Healthy" is defined as someone who can work full time (if age appropriate), does not have Type II Diabetes, COPD or active cancer, and does not live with someone with CFS. This is a FREE study and involves just one blood draw. Phlebotomists will go to the control's home or workplace, whichever is preferred. Healthy controls will get all the data that patients do (A LOT), but without interpretation UNLESS it's something that points to a well known, treatable problem that a local doctor could manage.

and

... right now the researcher in CA (Dr. Naviaux) has already done 40 patients and controls from two different clinics in CA. At this point the CFS patients HAVE to be patients of my doctor, Paul Cheney in NC. But since his patients come from all over the US and world, we are looking for controls from all over the US.

and

http://www.gordonmedical.com/unrave...ego-the-effort-to-conquer-autism-is-personal/

If you scroll down there is a short paragraph on Gordon Medical's involvement with the CFS project.

So, caveat lector, I have no personal knowledge of this, but it is interesting and suggests the research is ongoing...

 

[Daisymay]

Based on data already obtained from two other sites, this will be a ground breaking study published by years end. My specialist has seen the early data and says it is "truly spectacular and will change the face of CFS treatment".

Thanks Akrasia for posting this info, it sounds really interesting, looking forward to seeing it published.

 

[Sasha]

My specialist has seen the early data and says it is "truly spectacular and will change the face of CFS treatment".

That'd be handy!

 

[shannah]

Would love some inside tidbits ...

 

[natasa778]

Would love some inside tidbits ...

I'm putting my money on suramin ;-)

 

[Never Give Up]

I've had some correspondence with Dr. Naviaux, here's what he told me:

"I have only been working in the CFS world for a year, but we have already made several discoveries that have a chance to offer real hope for people who have suffered for so long. We have a paper in review at JAMA. If it is published, we will have a real start on seeing CFS in a new light, and having real tools for new ways to treat patients as individuals, and not just as a patient with CFS."

Very encouraging!

 

[Kati]

I've had some correspondence with Dr. Naviaux, here's what he told me:

"I have only been working in the CFS world for a year, but we have already made several discoveries that have a chance to offer real hope for people who have suffered for so long. We have a paper in review at JAMA. If it is published, we will have a real start on seeing CFS in a new light, and having real tools for new ways to treat patients as individuals, and not just as a patient with CFS."

Very encouraging!

Thank you @Never Give Up this is fantastic news!

 

[Never Give Up]

@halcyon pointed me to a review Dr. N wrote on oxidative stress here:

http://jpet.aspetjournals.org/content/342/3/608.long

I started reading it, but had to put it on hold, too busy, hope to finish it up next week. Anyway, it's a fascinating idea which could explain ME.

What's your take on it @halcyon?

 

[halcyon]

What's your take on it @halcyon?

It's an interesting read that I think will have relevance to our disease as more is learned. So far I'm happy to see that Dr. Naviaux is involved in research on this disease and I'm looking forward to his JAMA paper.

 

[Sasha]

I've had some correspondence with Dr. Naviaux, here's what he told me:

"I have only been working in the CFS world for a year, but we have already made several discoveries that have a chance to offer real hope for people who have suffered for so long. We have a paper in review at JAMA. If it is published, we will have a real start on seeing CFS in a new light, and having real tools for new ways to treat patients as individuals, and not just as a patient with CFS."

Very encouraging!

Thanks for writing to him - that is indeed very encouraging!

I wonder how long it takes JAMA to get things through review and into print.

 

[Sidereal]

Wow! JAMA tends not to publish any biomedical CFS papers.

 

[Kati]

Thanks for writing to him - that is indeed very encouraging!

I wonder how long it takes JAMA to get things through review and into print.

It depends on peer review and whether corrections are required. And they are still hoping to be accepted at this stage.

 

[Sasha]

It depends on peer review and whether corrections are required. And they are still hoping to be accepted at this stage.

Some journals give standard estimates of how long it should take authors to get a decision - I don't know if JAMA does that.

Can't wait to see this - hope it gets through quickly!

 

[Tuha]

Do we know what was the study about? I am always terribly impatient

 

[Sasha]

Do we know what was the study about? I am always terribly impatient

Excellent question! I don't know. Maybe there's a clue here:

http://med.ucsd.edu/divisions/med-genetics/research/Pages/Naviaux-Lab.aspx

Robert Naviaux Laboratory at UC San Diego

Research in my laboratory is divided in two groups: 1) Mitochondrial Mechanisms of Disease and Development, and 2) Evolutionary Systems Biology and Marine Metagenomics.

Areas of active research in our mitochondrial group include the development of mouse models of mitochondrial DNA (mtDNA) depletion and segmental amplification-overfunction disorders.

Additional studies include the mitochondrial systems biology of diabetes, autism, the anti-viral response, innate immunity, autoimmunity, aging, stem cell biology, and regeneration.

We are interested in the detailed mechanisms of tissue-specific mtDNA replication, DNA damage and repair, mitotic recombination, and copy number control.

This group has also developed novel methods for the study of animal cell quorum sensing through the agency of secreted cellular exosomes.

We study exosomal genomics, proteomics, lipidomics, and metabolomics as non-invasive biomarkers of health and disease.

Our Marine Metagenomics group is developing new methods of environmental DNA isolation and next-generation sequencing to create molecular census tables and trophic architectural maps of contemporary and ancient ecosystems.

Selected Publications

1. Naviaux RK. Mitochondrial control of epigenetics. Cancer Biology and Therapy7:1191-1193 (2008)
2. Naviaux RK, Le TP, Bedelbaeva K, Leferovich J, Gourevitch D, Sachadyn P, Zhang X-M, Clark L, Heber-Katz E. Retained features of embryonic metabolism in the adult MRL Mouse. Molecular Genetics and Metabolism 96:133-144 (2009)
3. Gourley PL, Hendricks JK, McDonald AE, Copeland RG, Yaffe MP, Naviaux RK. Reactive biomolecular divergence in genetically altered yeast cells and isolated mitochondria as measured by biocavity laser spectroscopy: A rapid diagnostic method for studying cellular responses to stress and disease. J Biomed Optics12:1-14 (2007)
4. Jiang Y, Hall TA, Hofstadler SA, Naviaux RK. Mitochondrial DNA mutation detection by electrospray mass spectrometry. Clin Chem. 53:195-203 (2007)
5. Naviaux RK, Good B, McPherson JD et al. Sand DNA - a genetic library of life at the water's edge. Marine Ecology-Progress Series. 301:9-22 (2005)
6. Naviaux RK, Nguyen KV. POLG Mutations Associated with Alpers' Syndrome and Mitochondrial DNA Depletion. Ann Neurol. 55:706-712 (2004)

List of Publications from PubMed

There's this from Mindy Kitei's interview with Ian Lipkin:

Kitei: Following Koch’s Postulates, have you considered finding an animal model for ME?

Lipkin: It would be very difficult to develop an animal model right now. I’ve been dealing with this for a long time in autism. It’s a disorder in which people don’t make eye contact. What is eye contact in a rodent?

Kitei: There's some researcher [Dr. Robert Naviaux] who did this in autism recently and came up with a drug [Suramin] developed in 1916 to treat river blindness that reversed the autism in mice.

Lipkin: I’m not persuaded. The only thing that seems to work with these kids is applied behavioral therapy. What you’re doing there is starting very very early and trying to socialize them….

More on the autism thing - but I suspect that's not an example of what he's doing in our field.

So, mitochondria? Dunno.

@Simon, do you know anything?

 

[Sasha]

I just searched on the NIH's project database for him and it didn't produce anything. Was hoping I could find his grant application but his work must have been funded otherwise.

Very curious now!

 

[Sasha]

Still googling (obsessed now!). A little snippet from CFS Patient Advocate from July 2014:

Dr. Paul Cheney might take a slightly different view of the matter of mitochondrial treatment. He might express that "front-door" treatment of the low measurements of carnitine and co-Q10 is ineffective, and indeed perhaps counterproductive. Dr. Cheney believes that mitochondrial dysfunction in ME/CSF is a self-protective down-regulation and has to be dealt with carefully. This is a fantastic idea and certainly possible. Dr. Robert Naviaux holds similar views with his "playing dead" thesis.

I don't understand the reference to "playing dead"...