Professor Ron Davis's response to Naviaux study, including Q and A with Dr Naviaux

[Research 1st]

Because of politics, we mostly (not all) believe CFS is ME and ME is CFS, but we don't know that. This test will, help give us some answers.

A not insignificant amout of people on this forum (who test themselves extensively and repeatedly over years) are infected with many class of pathogens, primarily Borrelia and it's co infections, and many viruses too. NB: If patients only test using serology (Antibodies) or PCR, and you don't make antibodies to that pathogen because you are immune suppressed, you will test false negative. This has been found time and time again, in the sickest of ME CFS patients, who discover using new technologies, they have 2, 3, 5+ Infections simultaneously - which were serology negative.

The Holy Grail now for me, is to discover if people on this forum with chronic infections have the Mitochondria defect demonstrated in this study, or an entirely different illness. If they do, then this study is not on ME, but on CFS, as this study (to my knowledge) made no claims to the illness Myalgic Encephalomyeltiis, or Inflammation. (Inflammation is not required in the new IOM SEID condition, and again to my knowledge isn't required either for CCC CFS). Keep this in mind.

It would be nice to think we all test positive, but we simply don't know yet. I'd like to think we do but that's just fondness for the idea we are all one happy family and can believe ME/CFS is ME/CFS and just variants of each other.

Science rarely works like that, and many of us may (not will), be disappointed to get a negative blood test back, despite being housebound and severely ill with our variant of ME CFS. If this happens over and over again, then finally we can say with some accuracy that CFS is not associated to ME, which will help both ME and CFS.

We all wait with baited breath, access to this new assay (private testing) and sharing our results with each other as soon as possible:

How a future Metaboloics test may help users on this forum and Scientific knowledge generally:

E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have Chronic Viruses?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have POTS/Autoimmune?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have classical 'Tick' Lyme?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also has non tick 'Chronic Lyme'?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have Sudden Onset?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have Slow Onset?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have Cancer?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also has HIV?

E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have Mother with CFS?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also had Brother/Sis with CFS?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have Blood Transfusion?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients were born after a certain date?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have adult vaccine exposure?

E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have a certain race/ethnicity?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients mostly live in the West?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have a higher IQ than normal?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients relatives have Autism or MS?

E.g. Does positive test correlate at a lower, or higher rate when CFS patients report onset during puberty?
E.g Does positive test correlate at a lower, or higher rate when CFS patients report onset after sexual activity?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients report head injury before CFS?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also report surgery before CFS?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also report Seizures before CFS?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients report serious childhood infections?

Think if 100's of us test, the information we can gather, and gather rapidly. We can help ourselves, and each other.

 

[Groggy Doggy]

I have enjoyed reading the feedback (compliments, suggestions, and disagreements) regarding Naviaux's study. The Q/A's from Ron and Bob are incredible!! I also really appreciate the time that @Rose49 and @Ben Howell offered us. I am looking forward to learning more about how Ron will replicate/validate Naviaux results. It's exciting to see the progress.

I know little about the chronic infections from Lyme, how Lyme relates to ME, or the best way to treat it. In my opinion, treatment plans need to be considered on an individual basis; that is the role of the prescribing physician.

 

[Janet Dafoe]

Like others, I have had misgivings about the protracted use of antimicrobials without concrete justifications. Without a clear infectious trigger event in my daughter's case, there has always been the concern of unforeseen comsequences. She has deteriorated over time--and not in the deconditoning way--but in the severity of symptoms way. Whatever process is underway in her body is not over by any stretch of the imagination. But it has to be stopped and I believe that metabolomics and immunogenomics will likely hold the best hope for diagnostics and treatment. For this reason, I am 100% behind Dr Davis and Dr Naviaux.

@Rose49 Bless you and bless the work your husband is doing. I am grateful every day for people who are passionate visionaries willing to challenge the status quo on this disease.

I have only been a full time caregiver for my 20 year old daughter (moderately severe) for almost three years and I can't fathom what you go through. I honor your and Ron's sacrifices on behalf of my family. We have all been transformed by this disease.

Thank you for your time and generosity taking the time to reply and for facilitating answers from Drs Davis and Naviaux.

I am hanging on every word. I actually started looking for online classes in molecular and cellular biology today so I could better understand this research.

Best wishes from Oregon.

Where in Oregon? I'm in Vancouver/Portland right now. Start a private conversation with me!

 

[Janet Dafoe]

Because of politics, we mostly (not all) believe CFS is ME and ME is CFS, but we don't know that. This test will, help give us some answers.

A not insignificant amout of people on this forum (who test themselves extensively and repeatedly over years) are infected with many class of pathogens, primarily Borrelia and it's co infections, and many viruses too. NB: If patients only test using serology (Antibodies) or PCR, and you don't make antibodies to that pathogen because you are immune suppressed, you will test false negative. This has been found time and time again, in the sickest of ME CFS patients, who discover using new technologies, they have 2, 3, 5+ Infections simultaneously - which were serology negative.

The Holy Grail now for me, is to discover if people on this forum with chronic infections have the Mitochondria defect demonstrated in this study, or an entirely different illness. If they do, then this study is not on ME, but on CFS, as this study (to my knowledge) made no claims to the illness Myalgic Encephalomyeltiis, or Inflammation. (Inflammation is not required in the new IOM SEID condition, and again to my knowledge isn't required either for CCC CFS). Keep this in mind.

It would be nice to think we all test positive, but we simply don't know yet. I'd like to think we do but that's just fondness for the idea we are all one happy family and can believe ME/CFS is ME/CFS and just variants of each other.

Science rarely works like that, and many of us may (not will), be disappointed to get a negative blood test back, despite being housebound and severely ill with our variant of ME CFS. If this happens over and over again, then finally we can say with some accuracy that CFS is not associated to ME, which will help both ME and CFS.

We all wait with baited breath, access to this new assay (private testing) and sharing our results with each other as soon as possible:

How a future Metaboloics test may help users on this forum and Scientific knowledge generally:

E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have Chronic Viruses?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have POTS/Autoimmune?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have classical 'Tick' Lyme?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also has non tick 'Chronic Lyme'?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have Sudden Onset?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have Slow Onset?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have Cancer?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also has HIV?

E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have Mother with CFS?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also had Brother/Sis with CFS?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have Blood Transfusion?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients were born after a certain date?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have adult vaccine exposure?

E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have a certain race/ethnicity?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients mostly live in the West?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also have a higher IQ than normal?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients relatives have Autism or MS?

E.g. Does positive test correlate at a lower, or higher rate when CFS patients report onset during puberty?
E.g Does positive test correlate at a lower, or higher rate when CFS patients report onset after sexual activity?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients report head injury before CFS?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also report surgery before CFS?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients also report Seizures before CFS?
E.g. Does positive test correlate at a lower, or higher rate when CFS patients report serious childhood infections?

Think if 100's of us test, the information we can gather, and gather rapidly. We can help ourselves, and each other.

Ron and Laurel Crosby are working hard to make an easy way for patients to get Metabolon testing. They are testing it out now. Should be available soon.

 

[Janet Dafoe]

I asked Bob Naviaux to respond to this. Here is his response. I hope it clears things up!
Hi Ron and Janet,
Janet told me about your keen commentary on our paper and told me about what people were calling a “disagreement” between us. I don’t see any disagreement. I’ve added the point to our Q&A. Please let me know if this “agreement” is too controversial for the CFS community at the present time.
Q7. How would you respond to Dr. Ronald Davis’s recent statement: “"What is important to note is that in the absence of evidence of an active infection, it is plausible that the long-term antimicrobial treatments often used for ME/CFS patients are doing more harm than good."

I am in complete agreement.Many antibiotics like tetracyclines, erythromycin, and the fluoroquinolones (eg, Cipro), and antivirals like acyclovir, fialuridine, AZT, and ddC also inhibit mitochondrial functions when used chronically (usually for more than about 3 weeks).Because mitochondria are descendants of free-living bacteria, their machinery for protein synthesis and DNA replication are susceptible to many antibiotics, and for reasons unique to mitochondrial DNA synthesis, they are also sensitive to antivirals.Chronic use of these drugs can do more harm than good if there is no longer good evidence for an active infection.When mitochondrial functions are critically impacted by long-term use of certain antibiotics, a ripple effect in metabolism and gene expression is produced that can further impair energy production by mitochondria, converting an active cell danger response that occurs during active infection to a hypometabolic survival response.

In the field of mitochondrial medicine we are particularly sensitive to these issues of iatrogenic toxicity because some of the drugs that inhibit mitochondrial functions are very commonly used in patients without mitochondrial disease.For example, statins, valproate, and metformin can each produce problems in patients with pre-existing mitochondrial dysfunction.


Bob

Robert K. Naviaux, MD, PhD
Professor of Genetics
Biochemical Genetics and Metabolism
Departments of Medicine, Pediatrics, and Pathology
Co-director, The Mitochondrial and Metabolic Disease Center (MMDC)
UCSD School of Medicine

Here is Ron's response to Bob's question to him at the beginning of the above post:
"I love your response. It may be too controversial at this time but they need to be educated about the complexity of the disease and the complexity of the treatment. This is science not religion based on Belief. It is science that will cure them.
Ron"

 

[sue la-la]

Metabolomics should be rolled out fairly soon for patients. I am working on this with the person involved-particulary the UK side of things. @Rose49 is well informed of all this.

does the metabolomic testing require extra-fresh blood samples ?
for people not in the US/UK, would international shipping delays make the testing unreliable ?

 

[Janet Dafoe]

If you mean that, can I skype with him? (I'm all the way across the country). I won't waste his time--I'll prepare what I have to say and seriously ask him to consider it. And it can be anytime in the next few months--I actually work fulltime while dealing with the weirdness of my own complex 'illness' which sort of falls into this bailywick, but which I have done remarkably well with, since I was bedridden at one point; but still am way out of the nice robust middle of the bell curve where most of the population lives.

And warm thanks for responding.

Ron says he'd be very glad to hear your ideas. PM me and start a conversation. We'll set it up.

 

[Janet Dafoe]

does the metabolomic testing require extra-fresh blood samples ?
for people not in the US/UK, would international shipping delays make the testing unreliable ?

The blood has to be sent in dry ice. Heavy and expensive overseas. But amazing Laurel has figured out an alternative and is testing it out now. Overseas. Woohoo!

 

[Janet Dafoe]

I don't have a pet theory. I pointed out that the researcher isn't even aware of the current state of the art in terms of persistent infection in lyme--which was written up in Scientific American, as I linked to, so isn't hard to find. That 20% have persistent symptoms, ie ongoing infection. Johns Hopkins' research on persisters is pretty widely known, too. I have no pet theory, as I said, but if he's going to say that only a small percentage of people who get lyme go on to chronic symptoms, he's wrong. He ought to know better before he makes statements like that. Moreover, as I said, EBV is not equivalent to nor should it be classed with lyme. It's a universal infection that most of us handle--that is, except for later-in-life cancers, such as b-cell related cancers (where EBV resides)

He most certainly is aware and he works with both Naviaux and Eric Gordon, who are also aware. They don't get their info from Scientific American. They rely on peer reviewed studies and communication with other world class scientists.

 

[alex3619]

testing it out now. Overseas.

I would love to see a test like this in Australia.

 

[Janet Dafoe]

Hi @msf

I wish I knew the answer but I dont.

OMI is seperate from OMF (though some OMI researchers such as Kolgenik are working with OMF).

I have no idea if OMI is working with Lipkin or Montoya. My extent of knowledge goes only so far as OMF and the staff and researchers involved there.


B

I have answered the Montoya part of this q in another thread. Ben, could you find it? Thank you!

 

[Janet Dafoe]

I would love to see a test like this in Australia.

Start a private conversation with me to remind me and I'll ask Laurel if she can manage Australia too!

 

[leela]

Hoping if I post here now I will be alerted (or flagged by a kind soul with two memory cells remaining) when testing is available or when patient blood is required for the next part of this study. I'm so in for both of those.

Such profound gratitude to Bob, Ron, Janet, and all support teams that have made this possible. Also to all donors, facilities, staff, and family members contributing to this good work and these good people.

I feel like the whole playing field has shifted this year. There is hope for us yet, exhausted troopers!

 

[GreyOwl]

Start a private conversation with me to remind me and I'll ask Laurel if she can manage Australia too!

Hi @alex3619 , can you pls let me know the outcome of your discussion?

 

[GreyOwl]

Such profound gratitude to Bob, Ron, Janet, and all support teams that have made this possible. Also to all donors, facilities, staff, and family members contributing to this good work and these good people.

From me too.

 

[Gingergrrl]

@Rose49 I am attempting to get the results of my Metabolon test from OMI from my doctor from May 2015 (if this is even possible?) but am wondering with the new research if it would actually better to re-do the test to show my most current metabolic status/results?

Do you know when the testing will become available for current OMI patients? I know they are not at a treatment phase yet but I would love to do the test again in the hope that it can guide my future treatment. I know you are very busy so no rush to answer this!

Safe travels and journey back home.

 

[Hutan]

Hi @Hutan, can you pls let me know the outcome of your discussion?

Hi @GreyOwl, @Rose49's kind invitation to contact her about testing in Australia was to @alex3619.

Certainly there are many people with ME in Australasia (that includes New Zealand too) who will be very keen to access this metabolite testing.

 

[alicec]

Start a private conversation with me to remind me and I'll ask Laurel if she can manage Australia too!

@alex3619, I'm sure @Rose49 doesn't need to be besieged with private conversations from all the Australians. Please let us know the outcome.

While reading the thread, I've been thinking I'd be prepared to fly to California to have the testing once the details are worked out. Much better of course if I could just send blood!

 

[simeyss]

I am very interested in how the researchers view patients who have had long remissions only to become ill again - usually more severely.

I have spoken with many other mainly middle aged women who have had the same illness trajectory. This makes me feel there is an immune deficiency somewhere that means we don't fight the precipitating infection(s) correctly and instead enter this 'stuck' mode.

Yes, this has been my pattern too. EBV in early 20s, which left me mod-severe for 3.5 years before partial remission (around 65 on Bell scale) for about 15 years, then relapse (severe) 2.5 years ago in my early 40s. I wonder whether my remission (which was never full. I worked, but not full time, was exercise intolerant, and needed lots of downtime) was like a ticking time bomb... something that was inevitably going to blow up. It would be terrific for researchers to compare relapsing/remitting types to those who have not had any sort of remission.

 

[alex3619]

@alex3619, I'm sure @Rose49 doesn't need to be besieged with private conversations from all the Australians. Please let us know the outcome.

While reading the thread, I've been thinking I'd be prepared to fly to California to have the testing once the details are worked out. Much better of course if I could just send blood!

I just started that conversation. I will try to keep everyone informed, and might start a thread on it. Do feel free to remind me, my memory is ... well, it would be impolite to give my real opinion, I don't like swearing.

@GreyOwl