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Health Rising – Recovery Potentially Possible: Naviaux Talks on Chronic Fatigue Syndrome (ME/CFS)

Health Rising
 
 
by Cort Johnson | Dec 13, 2016
 

Personalized treatment plans will require addressing the core metabolic abnormalities found in most ME/CFS patients plus the individual metabolic issues found of each patient.

Treatments that work for a time and then stop could be the result of not addressing all the metabolic needs of an individual.

Cort Johnson – “Recovery Potentially Possible: Naviaux Talks on Chronic Fatigue Syndrome (ME/CFS)”

The day after my brother’s wedding I shot down to San Diego to meet Rachel Riggs and a doctor with ME/CFS. Rachel, who has turned into a volunteer patient coordinator had enrolled me in Naviaux’s next metabolomics study. (Resistance, I quickly surmised, was futile – not that I was putting up any.) Rachel chatted away on the phone with another potential participant as we drove down to Naviaux’s lab. I was one of the last to give blood. editor’s note: Cort actualy enrolled in the 2nd Metabolomics study. SISOH is now recruiting for a 3rd study.

After I gave a surprising small amount of blood we tromped down the hall to meet with Dr. Naviaux in his workroom, the industrial looking pipes overhead bringing back memories of college labs in the past. Ducking into one lab Rachel showed me two $500,000 dollar mass spectometer machines each the size of a large microwave.

Gracious, as always, Dr. Naviaux offered us some coffee or tea. A bit spacey from my fast I tried out some green tea – at which point my nose immediately stopped up. At the first sound of my sniffles Naviaux turned to me and said we would have to note that for the study. (No one with a cold is allowed in the study.) Those sniffles cleared up later. (Dr. Naviaux, if you read this I promise it was from the tea…)

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MEDSCAPE – Biomarker Research Advances in ‘Chronic Fatigue Syndrome’

Science in Service of HumanityMiriam E. Tucker
Medscape – November 08, 2016

In addition, in an “unbiased” metabolomics study using mass spectrometry, metabolites that differed most between 17 patients with ME/CFS and 15 healthy participants involved pathways harvesting energy from glucose, fatty acids, and amino acids.

The finding, suggestive of a general hypometabolic state, corresponds to another recent study published in the Proceedings of the National Academy of Sciences. The specific metabolites differed between the two studies, but, Dr Komaroff said, “it’s consistent. It says that some types of metabolic pathways are downregulated in this illness, whereas others like those involving immunity and inflammation are upregulated.”

FORT LAUDERDALE, FL — New research adds to growing evidence that the illness commonly known as chronic fatigue syndrome is biologically based, researchers report here at the International Association for Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (IACFSME) research and clinical conference. Some of the abnormalities identified suggest potential clinical diagnostic tests and targeted treatments.

The condition, now called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) by US government bodies, has long confounded the medical community because, although patients may be severely debilitated and exhibit numerous abnormal physical findings, no specific biomarker has been found to conclusively make the diagnosis.

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Videos from the Millions Missing Rally

Eric Gordon at Millions Missing rally

Eric Gordon speaking at the Millions Missing ME/CFS rally on September 27

You can see videos of the speakers at the San Francisco Millions Missing rally on Facebook at the Chronic Fatigue Syndrome Research Center at Stanford University page.

Following patient speakers, you can hear Eric Gordon speak (video) beginning at about 31.35  minutes in.

Ron Davis follows talking about how to get more research happening.

Millions Missing San Francisco video on Facebook

More speakers (video)

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Press Democrat: Santa Rosa doctor’s study offers new insight into chronic fatigue syndrome

GUY KOVNER
THE PRESS DEMOCRAT | September 21, 2016

Eric Gordon MDA new study initiated by (Eric) Gordon and including Harrison as one of the subjects could provide that breakthrough.

The study, published last month, detected a “chemical signature” in the blood of chronic fatigue syndrome patients, establishing for the first time that chronic fatigue syndrome is an “objective metabolic disorder,” said co-author Dr. Robert Naviaux, the UC San Diego researcher who identified the blood chemical anomalies associated with the condition.

Gordon is a co-author of the study, and most of the patients in the study came from his practice.

Read PD Article

Read Full Study Paper

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Washington Post: Chronic fatigue syndrome may be a human version of ‘hibernation’

Gordon Medical Research CenterBy Ariana Eunjung Cha September 6, 2016

A new study raises the extraordinary possibility that humans may be able to put themselves into a kind of hibernation state as well — but in a way that hurts us rather than helps us.

The research, published recently in the Proceedings of the National Academy of Sciences, focuses on the devastating condition known as myalgic encephalomyelitis, more popularly known as chronic fatigue syndrome. CFS is one of the biggest mysteries of modern medicine and is characterized by severe fatigue and related issues such as headaches and memory problems. According to conservative estimates, 2.5 million people in the United States suffer from it, but no cause has ever been pinpointed. That has made some doctors so skeptical of the diagnosis that many patients complain that they have sought help, only to be told the symptoms are in their heads.

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DONATE TO CFS RESEARCH

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The Telegraph News: Scientists find signature of Chronic Fatigue Syndrome in blood which suggests disease is the body going into hibernation

Gordon Medical Research CenterBy Telegraph Reporters
2016-08-30

New research has revealed a chemical signature of the disease in the blood of those with ME. Scientists from the University of California claim it is similar to a state found in nematode worms called dauer, where the metabolism adjusts to a difficult environment by slowing down.

This hibernation state enables existence, but not much more.

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DONATE TO CFS RESEARCH

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ME Action says: NAVIAUX’S METABOLISM PAPER IS ABOUT AS BIG AS YOU THINK

Gordon Medical Research CenterFor those who are wondering at the results and their implications, Naviaux’s study in a nutshell states that the cells of ME patients are in a sort of protective hibernation, limiting their consumption of resources and engaging in a hypometabolic state as a response to infection or other stressors. By examining patients’ metabolites in detail, it was found that this degree of protective hibernation correlates directly to clinical severity.

Naviaux also posits that cells in ME/CFS are cells under enormous stress, for which they create a series of defenses, metaphorically installing a superior lock and alarm system and hiding all the valuables. However, some pathogens know the code to get in, and when the resources are hidden, the host can’t use them, either. Both of these aspects of this mode of cellular defense have profound implications for symptomology.

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Economist on New Naviaux CFS Paper: A new test may diagnose a mysterious illness, and also help to explain it

Sept 3rd 2016

Gordon Medical Research CenterEvidence that CFS truly does deserve all three elements of its name has accumulated over the years but a definitive diagnostic test has remained elusive. Until, perhaps, now. For in this week’s Proceedings of the National Academy of Sciences Robert Naviaux of the University of California, San Diego, and his colleagues published evidence that the metabolisms of those diagnosed with CFS are all changing in the same way. Their data suggest it is this cellular response to CFS-triggering traumas, and not the way the response is set in motion, which should define the illness. They also show that this response produces a chemical signal that might be used for diagnosis.

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Chasing the Shadow Virus: Chronic Fatigue Syndrome and XMRV | DiscoverMagazine.com

By Hillary Johnson|Thursday, March 07, 2013

In one of the most bruising science debacles of the decade, researchers hoped to track down the cause of chronic fatigue syndrome—but ended up studying an artifact created in the lab.

Chasing the Shadow Virus: Chronic Fatigue Syndrome and XMRV | DiscoverMagazine.com.