Monday, August 29, 2016

Robert Naviaux Metabolome study in ME/CFS


The long awaited study from Dr. Robert Naviaux of the University of San Diego was released today. It is a key study in this illness. 

You can read about it here and here.

This is apt to be the most important ME/CFS study to date.

An article on healio states:


"Among patients with CFS, results showed abnormalities in 20 metabolic pathways, including sphingolipid, phospholipid, purine, cholesterol, microbiome, pyrroline-5-carboxylate, riboflavin, branch chain amino acid, peroxisomal and mitochondrial metabolism. Researchers noted a decrease in 80% of the diagnostic metabolites, which was consistent with a hypometabolic syndrome. Men had diagnostic accuracies of 94% using eight metabolites and women had 96% diagnostic accuracies using 13 metabolites, according to the area under the receiver operative characteristic curve analysis.
“Despite the heterogeneity of CFS, [and] the diversity of factors that lead to this condition, our findings show that the cellular metabolic response is the same in patients,” Robert K. Naviaux, PhD, professor of medicine, pediatrics and pathology and director of the Mitochondrial and Metabolic Disease Center at UC San Diego School of Medicine, said in a press release. “And interestingly, it is chemically similar to the dauer state you see in some organisms, which kicks in when environmental stresses trigger a slow-down in metabolism to permit survival under conditions that might otherwise cause cell death. In CFS, this slow-down comes at the cost of long-term pain and disability."
I was at the ILADS conference in San Diego in 2013. Among the interesting connections that I observed was a meeting between Dr. Naviaux and three ME/CFS researchers - Neil Nathan, Eric Gordon and Judy Mikovits. Dr. Nathan had arranged the meeting, thinking that Robert Naviaux might have an interest in ME/CFS.  Neil Nathan, friend of Rich van Konynenburg, had the right instinct on this one. Thanks to him for this connection. 

Dr. Robert Naviaux is a mitochondrial researcher at the University of San Diego. 

Read about him here

Dr. Naviaux has done metabolomic work in the field of Autism, which many feel is allied to ME/CFS. Various studies can be accessed online. Basically Dr. Naviaux has uncovered metabolomic dysfunction patterns in Autism, just as he now has in ME/CFS. 

It is difficult to put into words just how important this study might be for getting the ball rolling. Not only does it provide a clear framework for metabolomic analysis for diagnosis, but it also points towards further studies in treatment possibilities. 

Dr Naviaux works in collaboration with the Open Medicine Foundation, work being done with geneticist Ron Davis and others at Stanford. Their collaboration very well might be a fruitful one for patients with this disease. Here is what Ron Davis says about the study. The Open Medicine Foundation is working hard on a Severe ME patient study and a host of other things. They deserve all the support that they can get, at this critical time. 

A word about Dr. Eric Gordon. Dr. Gordon runs the Gordon Medical Center and sponsors research. He has developed a working research relationship with Dr. Naviaux and Dr. Gordon is named on this paper. You can get more information about this study from Gordon Medical here. Dr. Gordon is one of these physicians who is "all there, all the time". If you want to help out, support his fund for a replication study. Replications are never done in ME/CFS and are a big sign of the problem in ME/CFS research. Those of you who are willing to participate but don't want to throw your money away, I suggest backing Dr. Gordon and his efforts. 

Interestingly, another long-time ME/CFS physician, Dr. Paul Cheney has long held the belief that ME/CFS was a down-regulation of many body functions - as a protective device, a protection from dying. Hence Dr. Cheney has been careful in what treatments might be applied, careful that he would not make the patient worse. In this way he eschews using therapies like coQ, D-ribose and various other items that might provoke - believing that they might make things worse. In a nice way, this study is a substantiation of Dr. Cheney, whose down-regulatory notions parallel Dr. Naviaux's "playing dead syndrome"


17 comments:

  1. So happy to see you! This, of course is a most good reason for you to be back!

    I am thinking about playing even more dead, but I'd miss all this fun!

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  2. I am not pleased with the Conclusion, which said ""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." This sounds to me like a return to the old "It's all in your head" psych studies from the NIH and CDC. We don't need more psych studies; we need biomedical studies and clinical trials--and treatment.

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    1. Alex Young aka alex3619August 30, 2016 at 5:22 AM

      Ummm, no. I am dead set against psychobabble, but these kinds of studies are critical if their finding is to be accepted. There are many hurdles for diagnostic research, and the two biggest are sensitivity and specificity findings. If both are not very high then the test will be ignored. However I am very sure psychobabblers may try to use such findings to support their views.

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    2. Um, yes. The conclusion of the authors is that the results for people with M.E. need to be compared with deopression and PTSD. These are mental conditions; they are not biomedical. They are what the psychs have been trying to classify us with for decades--and what they use to prescribe treatments such as cognitive behavioral therapy and graded exercise therapy for M.E. patients. We do NOT need more psych studies. M.E. is a biomedical disease, if the researchers ever actually honestly study the disease, they will find medical causes and treatments, no psych "cures." M.E. patients do NOT need more psych studies. Do researchers compare AIDS and cancer study results with depression and PTSD? No! So why should M.E. be compared to depression and PTSD?

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    3. http://www.eurekalert.org/pub_releases/2016-08/uops-cmd081116.php

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    4. Thank you, Anonymous. This article illustrates my point exactly. Depression and PTSD are mental disorders. ME is a biomedical disease and cannot be cured or improved by the same treatments as mental disorders. Psychiatrists have been trying to relegate M.E. to mental illness for decades and recommending Cognitive Behavioral Therapy and Graded Exercise Therapy for treatment. These "treatments" actually worsen the illness of M.E. patients. So why compare ME results with those of mental disorders?

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    5. I think you missed the point

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    6. I agree with Wildaisy that it is ridiculous and harmful that he says depression and PTSD are related conditions that need to be compared to ME! What evidence is there for this? And he even calls "CFS" "Chronic Fatigue" at one point.

      Yes, I agree that there many cases of depression are probably entirely biomedical. BUT, (1) there is no evidence that depression and PTSD are related to ME and (2) he fall right into the trap set by the charlatans by calling it "Chronic Fatigue" and saying it's related to depression!

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  3. Interesting connection to Dr. Cheneys beliefs!

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    1. Yes, this was one of my takeaways.

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  4. I wonder what the results would be for someone in a coma. Or someone who is paralysed and thus is extremely inactive with low metabolism needed.

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  5. Hi,
    You wrote:
    "Dr. Gordon is one of these physicians who is "all there, all the time". If you want to help out, fund his replication study."
    I believe the OMF has already funded this to the tune of $400,000.

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  6. Gordon wants to replicate his own study? I thought it had to be done by an independent group to be considered a replication.

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  7. If I read that correctly it seems that you are saying Dr Cheney believes that there is something
    wrong with our cells which is endangering them which is what is causing the protection mechanism
    to engage, I seriously hope this is not true as it would surely complicate matters, I interpreted
    the results to mean that the protection mechanism was not disengaging after any threat had long gone,
    or perhaps a residual signal in the body that we are not aware of like for example a very ineffective but slow replicating virus
    that the immune system is unable to detect which isnt causing a lot of damage but the mitochondria are noticing it ( unlikely but an idea ) or the broken traces of a previous virus that are somehow lingering in the body ( not sure thats even possible )

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    1. http://www.sciencedirect.com/science/article/pii/S1567724913002390

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  8. Gordon Research Associates

    https://www.gordonmedicalresearch.com/metabolomics/

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