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Naviaux Study Info Imbeded In Collaborator's Blog Post

Gingergrrl

Senior Member
Messages
16,171
I really don't know but had concerns similar to the OP and Sasha that people could think they were donating to the metabolomics study at OMF and really be donating to Gordon Medical group.

They could have joined forces, I have no idea, but would just want further clarification for myself. Nothing more than that!
 

Sasha

Fine, thank you
Messages
17,863
Location
UK
I'm also a bit confused because of this, posted on another thread a couple of months ago:

Apparently the paper has been turned down. How disappointing there's a hold up.

Post #18 on Cort's site on the weekend states:

"it was turned down for publishment by the JAMA because he does not have enough subjects..so he is trying to get more funding for Dr. Cheney's patients to be in the study..and or look for a different journal to publish. But it will happen eventually."

http://www.cortjohnson.org/forums/t...dy-turns-to-the-mitochondria.3949/#post-14886

So I'd thought that the collaboration between Dr Davis and Dr Naviaux was to get more subjects, which was maybe my misunderstanding, because:

Dr. Eric Gordon 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.

So maybe we're going to get to see the earlier study after all and the new collaboration is a follow-up to that.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
So I'd thought that the collaboration between Dr Davis and Dr Naviaux was to get more subjects, which was maybe my misunderstanding, because:
My understanding was that the 43 patient study is completed but not published, and the OMF are funding a separate replication study with 100 patients.

So maybe we're going to get to see the earlier study after all and the new collaboration is a follow-up to that.
Unless their website has not been updated since the paper was rejected.
 

Justin30

Senior Member
Messages
1,065
I love eveything that is happening right now....

This is great...

The problem is that so many biomarker and other hypothesis are being proposed. We now have:

  • Lipkin Gut - over as underactive immune system same as KDM
  • Naviaux - Mitochondria problem/ disease
  • Fluge and Mella - Autoimmunity
  • Viruses - Ampligen, Valcyte, Cidofir
  • Encepholopathy - NIH, Dr Byron Hyde, Dowsette, PET and SPECT scan findings
  • Neuroinflamation - Hot Brain Younger
There is more obviously this is why a massive amount a MONEY and several centers need to open up ASAP to sort this out....

They have known about the outbreaks, viral, bacterial, vaccine, since before the 50's this.....

They know it real and it time to spend the Billion $s to make up for lost time.

Build the Center and Study the Sick!!!!

When is the next MillionsMissing Protest?????
We cant stop!!!!
 

Never Give Up

Collecting improvements, until there's a cure.
Messages
971
I love eveything that is happening right now....

This is great...

The problem is that so many biomarker and other hypothesis are being proposed. We now have:

  • Lipkin Gut - over as underactive immune system same as KDM
  • Naviaux - Mitochondria problem/ disease
  • Fluge and Mella - Autoimmunity
  • Viruses - Ampligen, Valcyte, Cidofir
  • Encepholopathy - NIH, Dr Byron Hyde, Dowsette, PET and SPECT scan findings
  • Neuroinflamation - Hot Brain Younger
There is more obviously this is why a massive amount a MONEY and several centers need to open up ASAP to sort this out....

They have known about the outbreaks, viral, bacterial, vaccine, since before the 50's this.....

They know it real and it time to spend the Billion $s to make up for lost time.

Build the Center and Study the Sick!!!!

When is the next MillionsMissing Protest?????
We cant stop!!!!
Wouldn't it be fun to see each finding put into one unifying and highly treatable disease model?
 

hixxy

Senior Member
Messages
1,229
Location
Australia
It seems any biomarker based on metabolomics might not be cost effective enough to get widely adopted. I wonder if that $1500 donation for free test is reflective of the actual cost of the test itself?
 

Justin30

Senior Member
Messages
1,065
Wouldn't it be fun to see each finding put into one unifying and highly treatable disease model?

Yeah I can see what some link between it all....

I see the what happens though is the sheer degree of testing required to have a tailored treatment regiment based on where your body is at and how to get it back on course assuming you dont have other "Comorbidities" that muddy the waters.

And permanent damage done.

I hope they figure it out and then because they neglected us for years use stem cells to heal our bodies...
 

snowathlete

Senior Member
Messages
5,374
Location
UK
In addition to Dr. Naviaux and Dr. Davis, the new study is being conducted in collaboration with Dr. Paul Cheney and Dr. Eric Gordon’s team. Dr. Davis will correlate the metabolic findings with genetic results.
from the OMF site: http://www.openmedicinefoundation.org/2016/05/17/new-metabolomics-study-begins/

My reading of things is that Dr. Naviaux and the Gordon Medical Centre did a study which they are in the process of getting published. The OMF are now collaborating with them on a larger replication study, which presumably will include the OMF and the Gordon Medical Centre funding it between them.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
The blog post was dated 5/27/16.
Thanks. So it looks like it's definitely in the process of being published. I've just noticed this date as well...
Gordon Medical Research Center said:
As of April 2016, we have completed and submitted for publication the first CFS Metabolomics study, looking at biomarkers in 84 subjects, 43 patients and 43 age and sex matched controls. It is currently undergoing peer review prior to publication in the fall of 2016. The statistical strength of the results is very strong, indicating a potential commonality in all CFS patients. However, validating the biomarkers for CFS will require more than one cohort of patients. GMA and Dr. Naviaux’s lab have teamed up with Dr. Paul Cheney to complete the second group of patients. Dr. Cheney’s long experience and clinical acumen make his patients probably the best defined group of CFS patients in the world. If we confirm our findings with Dr. Cheney’s patients, we will finally have a diagnostic test for Chronic Fatigue Syndrome.

http://www.gordonmedicalresearch.com/?page_id=142#when
 
Last edited:

shannah

Senior Member
Messages
1,429
I'm also a bit confused because of this, posted on another thread a couple of months ago:

That was from Cort's site:

"Post #18 on Cort's site on the weekend states:

"it was turned down for publishment by the JAMA because he does not have enough subjects..so he is trying to get more funding for Dr. Cheney's patients to be in the study..and or look for a different journal to publish. But it will happen eventually."

http://www.cortjohnson.org/forums/t...dy-turns-to-the-mitochondria.3949/#post-14886 "


Perhaps it was turned down by JAMA but accepted by another journal.
 

duncan

Senior Member
Messages
2,240
So which are they recruiting for come this Fall: Post Lyme or chronic Lyme?

The one excludes the other.
 
Messages
40
Location
Melbourne, Australia
So which are they recruiting for come this Fall: Post Lyme or chronic Lyme? The one excludes the other.

Sometimes "Post Lyme" is a weasel word for "Chronic Lyme".
Sometimes it's legitimate - the Lyme has been mostly eradicated, but person still very unwell.

I wonder if fixing the mitochondria, would help the immune system to control the Lyme ?
 

M Paine

Senior Member
Messages
341
Location
Auckland, New Zealand
It seems any biomarker based on metabolomics might not be cost effective enough to get widely adopted. I wonder if that $1500 donation for free test is reflective of the actual cost of the test itself?

The $1500 covers testing which looks at a very wide range of metabolites. The 'metabolome' part of 'metabolomics' refers to the collection of metabolites in a person. That could include tens of thousands of unique metabolites.

Once a biomarker, or biomarkers, are identified, be they metabolites or some other compound or metric, then a targeted diagnostic test that uses regular lab screening techniques can be used to measure that specific compound.

In other words, a diagnostic test is unlikely to be anywhere near this expensive when one is developed.
 

duncan

Senior Member
Messages
2,240
Yes, @sue la-la , there can be confusion over the use of post Lyme and chronic Lyme.

All the more reason that any given author clarify how he employs them - or at the very least use them in a consistent manner.

This author seems to me to almost be using them interchangeably. That could be cause for concern if my reading is correct.
 
Messages
40
Location
Melbourne, Australia
Duncan, there is a possibility - that Naviaux and Lipkin both have inside knowledge, that all the mislabelling is nonsense, and most/all of the 'PTLDS' and 'functional disorder' people have very real, objective pathologies (including mitochondrial dysfunction, immune dysfunction, and chronic infections). in this situation, it wouldn't matter WHICH ridiculous labels were used by NIH, IDSA, etc - because they'll all become obsolete, replaced by objective testing.

(yes, i live in a fantasy land, where good things happen...)
 

msf

Senior Member
Messages
3,650
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.

Since we do not know what ME is, it might be better to say that some cases of Lyme have been previously diagnosed as ME.
 

snowathlete

Senior Member
Messages
5,374
Location
UK
Since we do not know what ME is, it might be better to say that some cases of Lyme have been previously diagnosed as ME.

No doubt some cases of Lyme have indeed been diagnosed as ME. A good study should reduce the chances of including such cases by exclusionary testing, though that won't catch all of them as the testing is not adequate.

It will be interesting to see if diagnosed Lyme patients look different to ME/CFS, or not. But because of the similarities in symptoms it will be important to compare to other diseases also.