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Naviaux Study Info Imbeded In Collaborator's Blog Post

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
http://www.gordonmedical.com/unrave...unding-replication-study-on-cfidsme-findings/

Posted 5/27/16 by Eric Gordon, M.D., a physician focusing on "chronic illness".

Dr. Robert Naviaux and I have submitted for publication a study, now under peer review and expected to be published in the fall of 2016, looking at 450 metabolites in 43 people with CFIDS/ME and 43 age and sex matched controls. We found a characteristic chemical signature differentiating the patients from the controls. We just received a grant, that along with donations to our newly established non-profit, will allow us to replicate this study. If our findings are indeed replicated we will have a biochemical test for CFIDS/ME.
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Dr Naviaux has written articles showing that the mitochondria also are at the heart of the bodies immune response.. He named this The Cell Danger Response. Toxins and infections are some of the main danger signals that mitochondria respond to. When that signal persists, chronic inflammatory disease often ensues. Dr Naviaux has some exciting experimental work showing we can “unstick” the persistent Cell danger Response and allow the immune system to stand down.

Our plan is to start enrolling Gordon Medical patients this Fall in a “post Lyme” metabolomic study. This study will biochemically define chronic Lyme disease and if large enough, allow us to define subgroups of these patients.

I do hope that this "post Lyme" group is one clearly defined subset heading into the study.

One sticky bit is this here:

The applicability to Lyme is that CFIDS/ME is a wastebasket diagnosis. It is the most common end state of many chronic inflammatory diseases. Chronic Lyme and Tick Borne Diseases that don’t respond to antibiotic therapy are in this class of illnesses. Many of the CFIDS/ME patients have Lyme in their history. Most of the chronic Lyme or “post Lyme” patients fit the criteria for CFIDS/ME.

Hoping the selection criteria for the completed Naviaux study is not too murky to be useful...

This part seems a bit fishy to me:

If you can donate $1500, you or a person of your choice will receive a free Metabolomics test.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
http://www.gordonmedical.com/unrave...unding-replication-study-on-cfidsme-findings/

Posted 5/27/16 by Eric Gordon, M.D., a physician focusing on "chronic illness".

.





I do hope that this "post Lyme" group is one clearly defined subset heading into the study.

One sticky bit is this here:



Hoping the selection criteria for the completed Naviaux study is not too murky to be useful...

This part seems a bit fishy to me:

Thanks for posting this @Never Give Up. I'm extremely interested in all things CDR.

I don't think the 'donate $1500 and get your own metabolomics test' is dodgy at all though. Sure, it's unconventional, but these researchers literally RELY on donations for their research. It's a method of getting funds and benefitting the donor in the process.

We can all blame our respective organisations and NIH that they have to go to these measures. It's ludicrous and criminal.


B
 
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Never Give Up

Collecting improvements, until there's a cure.
Messages
971
Thanks for posting this @Never Give Up. I'm extremely interested in all things CDR.

I don't think the 'donate $1500 and get your own metabolomics test' is dodgy at all though. Sure, it's unconventional, but these researchers literally RELY on donations for there research. It's a method of getting funds and benefitting the donor in the process.

We can all blame our respective organisations and NIH that they have to go to these measures. It's ludicrous and criminal.


B
What's "CDR"?
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Whether Lyme can lead to ME/CFS or not is an open issue. But for the test to be useful for ME/CFS we need to compare it against other disease controls, to confirm it is a unique result, not just healthy controls. So glad this is happening but perhaps should compare to something more clearly distant, like MS or something as well.
 

Ben H

OMF Volunteer Correspondent
Messages
1,131
Location
U.K.
I thought the OMF was funding a Naviaux study into metabolites / metabolomics ?

Yup, they are. I think they might be sharing researchers but @snowathlete might have a clearer understanding of this.

The only thing which worries me is that donations might get confusing. I'd like to see it all under the umbrella of Davis personally (which it might be but not sure).


B
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
There's more stuff on this page:

http://www.gordonmedicalresearch.com/?page_id=142

In particular:

Eric Gordon said:
How is it done?

Using this process of metabolomics blood testing, we will be able to define your biochemistry, and the biochemistry of others with similar symptoms. We then compare those results to people without symptoms. There are 450 unique chemicals that will be looked at in each blood sample.

Using advanced statistical analysis, the biochemistry that defines your symptom complex will be clarified. We will also be running these tests before and after treatment regimes to document how your chemistry changes with treatment. This will allow us to better compare outcomes of treatment and streamline the assessment and treatment process.

This is a huge undertaking. In order to understand the abnormal we have to run hundreds of age and gender matched controls. For children the quantities of these chemicals change from year to year until about 18 years of age. For adults, we are able to compare patients to gender matched controls of the same age.

Cellular Defense Response or CDR. This is an ancient cellular response to danger found in the earliest one celled organisms. It is a response orchestrated by an organelle in the cell called the mitochondrion. Mitochondria are considered the powerhouse of the cell.

They are found in all functioning cells, but their number and their structure differ in different organs. When the mitochondria sense that nutrients are being diverted by a virus, bacteria, or reduced by a toxin, the mitochondria slow down energy production.

This lowers the amount of ATP available in the cell and increases the amount of ATP, AMP, UDP, and other purine metabolites just outside the cell membrane. When this is a short lived event you feel sick and display sickness behaviors.

These responses are all part of a rapid response to danger. Think of burning the fields, and herding the livestock and stored food into the castle. Good strategy if the marauders don’t have their own supplies, not so good if they can hang around.

When the CDR gets stuck this may create chronic disease. Sometimes the inciting event stays, sometimes it’s gone. Sometimes the response is confined to one organ or a part of an organ. The homeostatic self-healing aspects of the body are amazing, but we do have a tendency to get stuck in a wide variety of patterns.

Dr Naviaux’s experiments on mice and some humans suggest that substances that block the purine receptors help the body reset itself and turn off the CDR, allowing a return towards more normal energy production in the mitochondrion, and towards overall health.

Whether his experimental treatment will be applicable to more diverse illnesses needs to be seen. We are hopeful that clinical trials will prove this, but even if this doesn’t turn out to be the answer we expect the metabolomics signature will clarify and direct future research.

For me, just being able to use your biochemistry as one way to help group patients with similar biochemical patterns together will be a big step forward. We have long been early adapters of biochemical markers for the illnesses our patients have.

Unfortunately, most have turned out to be nonspecific markers of up-regulated innate immunity, and not specific to a particular diagnosis. In fact Dr Shoemaker, who has pioneered a lot of this work related to the toxic effects of mold, has coined the term, Chronic Inflammatory Response Syndrome (CIRS).

There is a good chance that up-regulated purine metabolism may be similar in most chronic inflammatory illnesses. If this is the case, Dr. Naviaux’s treatment may reduce your own over exuberant immune system response, allowing you to take the next step in treatment without the usual problematic responses. This over exuberant response can manifest as “Herx”, or extreme sensitivity to treatments, debilitating toxicities, mast cell activation, etc.

If we can tame the CDR even for a few weeks it will return your reactivity towards normal, and though it may drift back towards over reactivity it doesn’t seem to go all the way back. Beyond the CDR is the rest of the 60 different pathways which include the 450 chemicals identified, including representatives of your bowel biome.

This is one of the more predictive groups that have been noted. See the link for a power point by Dr Naviaux and also the video link for a talk we hosted in Santa Rosa for more details.

Donations made through the Gordon Medical Research Center are tax deductible. Dr. Naviaux is working hard to streamline the process and get the testing price down.

We are hoping you will want to be a part of this pioneering effort. If GMRC raises more than the $400,000 needed for the study itself, the funds will go to improve the computer interface, allowing more rapid and complete data interpretation. All the money raised for this research will be carefully accounted and reported at the completion of the study. We will continue to raise funds to generalize the use of Metabolomics for the diagnosis and individualized treatment of chronic diseases.

I thought the OMF was funding a Naviaux study into metabolites / metabolomics ?

So did I. I'm a bit confused. I think they could do with some clarification.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I don't know where the Gordon Medical Research centre, or Gordon Medical Associates, have suddenly sprung from. Never heard of them before. They seem to work closely with Dr Naviaux.

The Gordon Medical Research Center website says this about them...
Gordon Medical Research Center
GMRC is a non-profit whose purpose is to support ground breaking research into the causes of, and treatments for poorly defined chronic illness. We are dedicated to funding studies that will improve the diagnosis and treatment of these diseases.
http://www.gordonmedicalresearch.com/?page_id=48

Welcome to the Gordon Medical Research Center!
The collaboration of an innovative medical practice with a university research center has been my lifelong dream. Combining forces with Dr. Robert Naviaux and his research into metabolomics, mitochondrial function, and chronic inflammatory disease is now bringing this dream to life.

The opening of the Gordon Medical Research Center is a critical element in developing funding for the research into the complex illnesses we focus on. Your donation will make possible further research into metabolomics and mitochondrial function and their impact on health and illness. Illnesses potentially caused by mitochondrial dysfunction will ultimately affect over 50% of the people born today. These diseases include autoimmune diseases, autism, Myalgic Encephalopathy/Chronic Fatigue Syndrome (ME/CFS), Post-Traumatic Stress Disorder (PTSD), Gulf War Illness, diabetes, heart disease, certain mental health disorders, and cancer.
http://www.gordonmedicalresearch.com/#


And the following is for Gordon Medical Associates, which is not the same as the Gordon Medical Research Centre...
ABOUT GORDON MEDICAL ASSOCIATES
Gordon Medical Associates is an internationally recognized treatment center for difficult to diagnosis and treat conditions, including Lyme disease, Chronic Fatigue Syndrome, Fibromyalgia, Autism, Multiple Chemical Sensitivity, and other illness that is often overlooked or left untreated. We offer a wide range of conventional and alternative treatments in individually designed protocols based on the patient’s needs.
http://www.gordonmedical.com/unravelling-complex-chronic-illness/about/
 
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Gingergrrl

Senior Member
Messages
16,171
I had the metabolomics test at OMI in May 2015 as part the research but no idea how my results were used and the data was not shared with me (which is okay and am just hoping it was helpful to them!)

Gordon medical group is a separate entity and am also a bit suspicious of them asking for donations and implying it will go to OMF or the Big Data Study. I would want further clarification myself.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
I thought the OMF was funding a Naviaux study into metabolites / metabolomics ?
It says that they've recently received a grant for a follow-up metabolites study...
Gordon Medical Associates said:
Dr. Robert Naviaux and I have submitted for publication a study, now under peer review and expected to be published in the fall of 2016, looking at 450 metabolites in 43 people with CFIDS/ME and 43 age and sex matched controls. We found a characteristic chemical signature differentiating the patients from the controls. We just received a grant, that along with donations to our newly established non-profit, will allow us to replicate this study. If our findings are indeed replicated we will have a biochemical test for CFIDS/ME.
http://www.gordonmedical.com/unrave...unding-replication-study-on-cfidsme-findings/
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Gordon medical group is a separate entity and am also a bit suspicious of them asking for donations and implying it will go to OMF or the Big Data Study. I would want further clarification myself.
I get the impression that they were seeking funds, independently of the OMF, before the collaboration with the OMF...
Gordon Medical Research Center said:
Right now your donations will help to raise money for this second cohort of patients to confirm our findings on CFS. Donors can be patients who are willing to pay for their own testing, or people who will donate funds for others to be tested. Donations made through the Gordon Medical Research Center are tax deductible. Dr. Naviaux is working hard to streamline the process and get the testing price down.

We are hoping you will want to be a part of this pioneering effort. If GMRC raises more than the $400,000 needed for the study itself, the funds will go to improve the computer interface, allowing more rapid and complete data interpretation. All the money raised for this research will be carefully accounted and reported at the completion of the study. We will continue to raise funds to generalize the use of Metabolomics for the diagnosis and individualized treatment of chronic diseases.
http://www.gordonmedicalresearch.com/?page_id=142
 
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Bob

Senior Member
Messages
16,455
Location
England (south coast)
Gordon medical group is a separate entity and am also a bit suspicious of them asking for donations and implying it will go to OMF or the Big Data Study. I would want further clarification myself.
did they imply that ?
I don't think they've implied that; they haven't mentioned the OMF or the big data study. Their website focuses only on the particular studies that they are involved with. And they explain what they will do with any donations. But some of their info needs updating, now that they have a grant for the larger study.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
For donations, it says...
Gordon Medical Research Center said:
Donate
Donate to GMRC Today and Help Change the Practice of Medicine!
Please donate what you can. Any amount can be of help, and is greatly appreciated. It is also tax deductible. We will use it to have tests run, pay the scientists, improve the computer software, lower the cost of the Metabolomics test, and improve the depth and breadth of information collected. The foundation is currently housed rent free at Gordon Medical Associates and has only one part time paid employee. All Board Members are volunteers. Our goal is to fund the scientists. If we eventually commercialize the test, profits will be used to fund patient centered research where budgets support scientists and doctors working together to help improve your lives.
http://www.gordonmedicalresearch.com/?page_id=17
 
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