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

[lansbergen]

Without even reading it, the answer is yes.

Ofcourse they will

 

[cman89]

I bet this CFS state is used as a last ditch effort to get rid of viruses, and it usually works. Normally the virus replication is greatly reduced due to the reduced metabolism, the body's immune system slowly mops it up, and the CFS state ends. But being a last ditch effort, if the virus cannot be eradicated, the body just stays in that state. Perhaps we evolved to use the CFS state against different viruses and it actually hampers response to some viruses.

This fits the naviaux hypothesis pretty well....

 

[cman89]

Why on earth did the daily mail interview a psychiatrist for comment? And when will we stop being besieged by the "this might show it's not all in the mind" narratives? How many times must that be shown before that stops being the go-to focus? Sigh.

But the study does sound intriguing. My brain can't quite follow it all...so I'm hoping for analysis from all the great science minds on this forum.

Basically, Naviaux and co found discernible metabolic waste/products in the blood/fluid that were consistent with 90% accuracy in IDing folks with ME, opposed to some of the more random biomarkers proposed in the past. The biomarkers were remnant of poorly functioning mitochondria.

 

[picante]

"Eighty subjects were from California". Can we find out if there is a relationship to where the subjects lived/worked (number of months) and known government reported toxic areas?

I grew up drinking the perchlorate-laced city water at this site: http://www.toxicsites.us/site.php?epa_id=CAN000905945
There was no test for perchlorate detection until the late 90s.

 

[Gingergrrl]

"Eighty subjects were from California". Can we find out if there is a relationship to where the subjects lived/worked (number of months) and known government reported toxic areas?

Am also curious if all of the 80 subjects were from Northern CA or if some were also from So CA or other parts of the state? Sorry if this was already stated somewhere and I missed it.

 

[JaimeS]

There's an image someplace....

 

[rebecca1995]

It's not independent replication though. Naviaux is involved. We need unrelated research groups to replicate this.

According to Cort's blog, the samples will be tested at UC Davis as well as Naviaux's lab. So, that's kind of independent.

 

[cman89]

Considering the "dauer" hypothesis, what do yall think it would take to kick mitochondria out of the dauer state? As far as treatments that would be common to all patients w/ME. I understand greatly that each treatment will have to be very individualized, but there would also be commonalities, would there not?

 

[cman89]

I'm sure there must be people on here who are fluent in German, and I've been waiting for them to explain this. In my very limited experience you are more likely to encounter the verb than the noun. This means "to last, persist, endure or take."

If you ask an English-speaking handyman how long a job will take, he is likely to say "it will take me about X, (if I don't find anything worse.)" There is some personal responsibility, but with an escape clause. In German, the job itself has persistence, irrespective of the worker. "Es dauert" (from dauern/daueren). This can range from "Es dauert nicht lange" to "Es dauert ewig."

In French the answer is most likely a shrug.

"es dauert nicht lange"---The job has not much persistence? Is that correct?

 

[Kati]

The thing for me is we do not know whether that dauer-like situation is a cause or a consequence. Dauer state explains why we are so lethargic, and suffering the metabolic consequences of pushing ourselves, because it breaks the fragile and precarious homeostasis we're in.

Mitochondrial dysfunction has been discussed for years now. Metabolomics can now prove and describe in which way it is a physical condition (and not psychologic).

However this paper doesn't describe the cause- or the serie of events leading to this dauer state, and by all means does not promise that correcting the metabolic deficiencies will lead to a cure.

As I mentioned before, there are layers and layers of complexities. The hormones. The genetic. The immunology. The viruses. The neurological components including brain abnormalities. Perhaps the auto-antibodies.

I am convinced they smart scientists can figure it out. But more research is needed.

 

[anciendaze]

"es dauert nicht lange"---The job has not much persistence? Is that correct?

More like the job doesn't take/last long. There is a definite preference for activity denoted by verbs. Beware of anything where "Es dauert ewig", that job is likely to put up an epic resistance to completion.

 

[anciendaze]

@Kati

"Now this is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning." Winston Churchill

 

[daisybell]

I'd love to know what the metabolomics are like of the people who've responded to Rituximab. Before and after comparisons would be very useful!

 

[Gingergrrl]

I'd love to know what the metabolomics are like of the people who've responded to Rituximab. Before and after comparisons would be very useful!

@daisybell I hope to be able to provide this information although obviously it would just be an N=1 scenario. I've told my doctor if it is humanly possible to get my blood sample that was biobanked in May 2015 for the Metabolomics test (through OMI) then I will pay to run the test as a baseline and May 2015 was the absolute sickest I have ever been in the entire illness. Then after both IVIG and later RTX, I want to run the test again (and maybe by that point there will be ideas from the research re: treatment). Although whether I will truly be able to get and tolerate RTX and whether I am a responder remains to be seen. But this is my plan.

 

[Sasha]

It's not independent replication though. Naviaux is involved. We need unrelated research groups to replicate this.

But it's on samples that were already collected, I think? At least in the severely ill OMF group?

 

[aimossy]

Davis samples may all be done through metabolon though, so that is a different lab to Naviaux's own lab I would think?

 

[Groggy Doggy]

I've just noticed that the forum has emojis for dauer worm larvae!

I had wondered if they were there for a purpose!

First we had the XMRV mouse, but the cat ate the mouse
Now we have the dauer worm .....so I think it is safe for now since I don't see a bird emoji

 

[TrixieStix]

The thing for me is we do not know whether that dauer-like situation is a cause or a consequence. Dauer state explains why we are so lethargic, and suffering the metabolic consequences of pushing ourselves, because it breaks the fragile and precarious homeostasis we're in.

Mitochondrial dysfunction has been discussed for years now. Metabolomics can now prove and describe in which way it is a physical condition (and not psychologic).

However this paper doesn't describe the cause- or the serie of events leading to this dauer state, and by all means does not promise that correcting the metabolic deficiencies will lead to a cure.

As I mentioned before, there are layers and layers of complexities. The hormones. The genetic. The immunology. The viruses. The neurological components including brain abnormalities. Perhaps the auto-antibodies.

I am convinced they smart scientists can figure it out. But more research is needed.

yes exactly! this "dauer" state may only be 1 "effect" of many resulting from the root "cause" of ME/CFS/SEID. I'm excited about the potential for this to become an accurate biomarker for the disease. As for finding the cause of the disease I am hopeful but expecting it to take many more years. But like other diseases such as Multiple Sclerosis which the cause of is still unknown, very effective treatments have still been developed. The path to understanding, treating and/or curing a disease is not always a linear one.

 

[knackers323]

Apart from general health benefits can anyone see why hgh is often a very effective treatment for cfs in relation to these findings?

 

[Ben H]

What we need now is independent replication. So it will takes years..... and years.....

Hi @Gijs

The replication study is already in progress, funded by OMF. Samples have already been collected and are in the process of being analysed. So it wont take years and years and years.

Just over a year ago there was just Ron and Laurel Crosby working on this in the lab at Stanford. Now there is:

Center at Stanford

Core Research Group
Laurel Crosby, PhD - expert in multi system integration; director of research CFSRCS
Gozde Durmus, PhD - expert Magnetic levitation of cells; Postdoc fellow, Stanford
Rahim Esfandyarpour, PhD - electrical detection of biologics; Research engineer, Stanford
Youg Li, PhD - expert Bioinformatics; Postdoc fellow, Stanford
Peidong Shen, PhD - expert DNA assays; Research Associate, Stanford
Wenzhong Xiao, PhD - expert Bioinformatics and Physical Chemistry; Harvard Medical School
Mohsen Gorgani, PhD - Expert mitochondrial Biochemistry; Research Associate
Robert Phair, PhD - Expert Integrative Bioinformatics and Systems Biology; Professor Johns Hopkins
Fereshteh Jahaniani, PhD - Expert Genetics from sequence and pharmacology; Research Associate (M Snyder), Stanford
Brian D Piening, PhD - Expert in Human Big Data; Post Doctoral Scholar with M. Snyder, Stanford
Curt Scharfe, MD, PhD - Expert Human mitochondrial genetics; Professor Yale University
Nader Pourmand, PhD - Expert nano needle injection into mitochondria; Prof UC Santa Cruz
Craig Heller, PhD - Expert medical and sports metabolism; Professor of Biological Science, Stanford

Academic Collaborators
Mark Davis, PhD - Immunology expert; Professor Immunology, Stanford
Mike Snyder, PhD - Expert Human Big Data studies. Chair Genetics, Stanford
Lars Steinmetz, PhD - Expert mitochondrial genetics; Professor Genetics, Stanford
Hanlee Ji, MD - Expert Big Data technology; Associate Professor Medicine, Stanford
Robert Naviaux, MD, PhD - Expert mitochondria & metabolomics; Professor UC San Diego
Jennifer Frankovich Sargent, MD - PANS expert; Clinical Assistant Professor, Stanford
Catherine Blish, MD - Human natural killer (NK) cells expert; Assistant Professor of Medicine, Stanford
Stuart Kim, PhD - Expert in Big Data of athletes and aging; Professor Developmental Biology and Genetics, Stanford
Garry Nolan, PhD - Expert Mass Cytometry & Phosphor flow; Professor Immunology, Stanford
Daria Mochly-Rosen, PhD - Expert translational medicine; Chemical and Systems Biology, Stanford
Steve Elledge, PhD - Expert auto antibody and virus detection; Professor Genetics, Harvard Medical School
John Bell - Expert Bioinformatics; Research Associate (H Ji), Stanford
Gregory Enns, MD - Expert Human mitochondrial genetics; Professor Pediatrics (Genetics), Stanford

Doctors that see CFS/ME Patients
Andreas Kogelnik, MD, PhD - Expert ME/CFS; Director Open Medicine Institute
Eric Gordon, MD - Expert ME/CFS; Gordon Medical Associates
Jose Montoya, MD - Expert ME/CFS; Professor Medicine Stanford
Nancy Klimas, MD - Expert ME/CFS; Director, Institute for Neuro Immune Medicine, Nova Southeastern University
Jarred Younger, PhD - Expert Pain and Anesthesiology; Professor, University of



Biotech Collaborators
George Schreiner, MD - Expert mitochondrial drugs; President & CSO Cardero Therapeutics
Sundeep Dugar, PhD - Expert pharmacological Chemistry; Cardero Rx
Fred Volinsky, MD - Antiviral drug development; CEO Epiphany Biosciences, Inc
Lisa Paborsky, PhD - Expert mitochondrial drugs; Senior Vice President Mitobridge, Inc.
John Ryals, PhD - CEO of Metabolon

Not including Dr Naviaux in his lab at UDSD. Impressive right?! There are biotech collaborators working with Ron already looking ahead for potential treatment options....


To say it is moving quickly is an understatement. Ron's ability as a scientist, an innovator, and bringing people together is unparalleled. He has always been ahead of the game, thinking and moving forwards. But we are still reliant on public donations. If you want replication, and like to see this research, please consider funding and being part of the solution:

http://www.openmedicinefoundation.org/donate-to-the-end-mecfs-project/

We have the most unbelievable group of scientists working on tangible biomedical research, for the first time, that WE are able to fund.

We still need independant replication. Dr Hanson's study was a really nice suprise and helps with this. Need to see the full paper to see how much it would count. But its extremely encouraging so far, from the webinar, and is on a different cohort of patients.


The ME/CFS landscape has been altered forever within the last week, and things are moving quickly. But we need NIH to do its duty, which should now be easier due to potential hypothesis.



B