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

[Gingergrrl]

I have had a death in my family and have to go to Portland for a few days. Lucky I now have a new great caregiver who can do my night job while I'm gone.

@Rose49 I am so sorry to hear this and Godspeed for a safe trip. It is wonderful that you found a new caregiver that you trust, too.

Subjects in Naviaux/Gordon study were from Gordon Medical Associates practice, NOT OMI. The OMF Big Data Study patients were from OMI. Ron's results are from Metabolon. Bob Naviaux's are from his own Mass Spectrometers at UCSD.

Thank you so much for clearing this up and I was very confused. In that case, I absolutely 100% was not one of the subjects in Dr. Naviaux's study as my test was done at OMI. And it sounds (if I understand correctly) that the term "Metabolomics" and the test "Metabolon" are two different things. I don't want to do anything to jeopardize anyone's data/research and had just been curious if there is a way to learn of my Metabolon results from the OMI test in case it can help guide my future treatment once the science continues to advance. And if there isn't, that is okay, too. Am going to pursue this on my own and thank you for your response, it was very helpful.

 

[Seven7]

How do you explain my case where I get remissions with colds and Zica virus. Also feel almost normal when I get my period?

2) I have natural killer cell dysfunction and the known treatment is antivirals and immune mods. So if you have a co-morbid disease it has to be treated. They cannot make those wide open statements. Use common sense.

 

[Gingergrrl]

How do you explain my case where I get remissions with colds and Zica virus. Also feel almost normal when I get my period?

This is why I still think there are different subgroups b/c I have not had a cold, flu, or fever in almost four years and I feel the absolute WORST when I have my period b/c of severe cramps and it is the riskiest time of month to flare up autoimmune and allergic issues.

ETA: I just re-read what I wrote and didn't mean it in any way to dismiss your experience, only that we are so different, that I don't see how this is one single illness.

 

[Seven7]

ubgroups b/c I have not had a cold, flu, or fever in almos

I understood no worries. I didn't get colds either and when I get them they are a day or 2 affair. I do not run fevers ( I had 3 fevers in my life).

Before my period I pass out left and right. I mean so bad that sometimes i Sit and do not stand unless needed. When I get it I don't have to go to the bathroom to know becuSe energy boost is so obvious. and the change is so obvious that Family/close friends can tell when I get it.

 

[alex3619]

I don't expect ME to be caused by a novel pathogen at all. Poliovirus was commonly found in healthy people as well.

My understanding is that severe complications from polio were uncommon, but so many were infected that uncommon meant very large numbers.

 

[ahmo]

Lucky I now have a new great caregiver who can do my night job while I'm gone.

 

[A.B.]

I personally think that the disease is present in some subclinical form before the trigger, and that the trigger is probably a red herring. In my case there was no trigger. Already years before there were some subtle warning signs that something in the body was abnormal but that had essentially no impact on functioning, so it was ignored.

 

[Janet Dafoe]

@Rose49 I am so sorry to hear this and Godspeed for a safe trip. It is wonderful that you found a new caregiver that you trust, too.



Thank you so much for clearing this up and I was very confused. In that case, I absolutely 100% was not one of the subjects in Dr. Naviaux's study as my test was done at OMI. And it sounds (if I understand correctly) that the term "Metabolomics" and the test "Metabolon" are two different things. I don't want to do anything to jeopardize anyone's data/research and had just been curious if there is a way to learn of my Metabolon results from the OMI test in case it can help guide my future treatment once the science continues to advance. And if there isn't, that is okay, too. Am going to pursue this on my own and thank you for your response, it was very helpful.

Metabolon is a company that does metabolomics testing

 

[Never Give Up]

Janet, @Rose49, thank you for involving us in this discussion process with Dr.'s Davis and Naviaux. It is very kind of you. We all have so many questions and, let's face it, gaps in our understanding of this cutting edge science.

I'm very sorry for your loss. Take care.

I wonder how length of illness, previous treatments, and exertion levels immediately preceding the sample being taken might affect the outcome?

Thank you, again.

 

[valentinelynx]

Announcement from Dr Naviaux's University lab website:
http://naviauxlab.ucsd.edu/science-item/chronic-fatigue-syndrome-research/



B

Fine announcement, but what's up with the *&%$! picture? Another lovely, well-groomed young woman who seems to have a headache.

 

[Riley]

I personally think that the disease is present in some subclinical form before the trigger, and that the trigger is probably a red herring. In my case there was no trigger. Already years before there were some subtle warning signs that something in the body was abnormal but that had essentially no impact on functioning, so it was ignored.

This was my experience as well.

 

[Sean]

I personally think that the disease is present in some subclinical form before the trigger, and that the trigger is probably a red herring. In my case there was no trigger. Already years before there were some subtle warning signs that something in the body was abnormal but that had essentially no impact on functioning, so it was ignored.

I do wonder if there is a long dormant (prodromal?) phase for some at least, with the latent pathology lurking quietly in the background waiting to somehow develop a full expression, but also having a significant ongoing effect on function in the meantime?

Are there some who get stuck in that phase and neither improve nor progress any further down the disease path? If so then they carry that background reduction in function for life, with all its cumulative costs, without any accurate diagnosis or explanation let alone meaningful therapy, and maybe also with an increased risk of some other diseases, like certain cancers.

 

[Sasha]

@Rose49
And it sounds (if I understand correctly) that the term "Metabolomics" and the test "Metabolon" are two different things.

"Metabolomics" is the study of metabolites and Metabolon is the name of a company that does metabolic testing.

 

[Sasha]

I'm very sorry for your loss, @Rose49. It's very good of you to keep posting information for us at this difficult time for you. We really appreciate it, and hope you have a safe trip to Portland.

 

[Cheesus]

I personally think that the disease is present in some subclinical form before the trigger, and that the trigger is probably a red herring. In my case there was no trigger. Already years before there were some subtle warning signs that something in the body was abnormal but that had essentially no impact on functioning, so it was ignored.

Back before he was suspended, my parents were talking to a certain Dr S about my history and how I had been so active at university before getting ill, but that I had had some warning signs and often felt quite unwell without ever being actually incapacitated. He said "Ah, so his health was masking the disease then?". I thought that was a really interesting way of describing it, and it certainly meshed with how I had felt over the years.

 

[msf]

I just spoke with Bob Naviaux and Ron. They do not disagree one bit. I read that paragraph to Bob and he said, "Ron is SPOT ON". He said the trigger can be an infection and the process gets triggered, but then keeps going long after the infection agent is gone. He said a lot more too but I am not capable of repeating it. I sent him the two quotes and he said he would write down his explanation for me to post here for you.

As a previous poster pointed out, there seem to be two possibilities for why ME patients are in a Dauer-like state - the one outlined above, and the persistent infection one. I would be interested to hear why Naviaux or Davis thinks the second one is unlikely given the results of this study.

Oh, and thanks for taking the time to deal with this question, Rose49, and I am sorry for your loss.

 

[adreno]

Bottom line: there may be a diagnosis soon, and they are working actively on how to get the process unstuck! My answer would be: Tell your body it's springtime! LOL How to do that is the million dollar question. We will get there!

From this I assume that the 'dauer state' is maladaptive – as opposed to adaptive or protective – and therefore it should be safe to pursue treatments that try to get the process unstuck. Is this correct? And thank you for your amazing effort in helping patients.

 

[user9876]

Back before he was suspended, my parents were talking to a certain Dr S about my history and how I had been so active at university before getting ill, but that I had had some warning signs and often felt quite unwell without ever being actually incapacitated. He said "Ah, so his health was masking the disease then?". I thought that was a really interesting way of describing it, and it certainly meshed with how I had felt over the years.

I think my child was similar. Small issues over the years such as feeling ill after a busy week. But then became badly affected after a busy time and then catching a bug.

 

[Tuha]

there may be a diagnosis soon, and they are working actively on how to get the process unstuck! My answer would be: Tell your body it's springtime! LOL How to do that is the million dollar question. We will get there!

Thanks for providing us many informations. From the patients perspective it´s always so hard to wait for informations - at least I am always very impatient. Now I am very wondering what are their next plans - about their future research.

 

[Chrisb]

Apologies if this is a stupid question but there are many of us who have gone through a lengthy period of relapsing /remitting illness wholly independent of PEM, although that would also sometimes be present.

In such cases would it be expected that the tested metabolites would appear different depending on the patients' state at the time samples were taken? Have tests been done on samples from patients over a period and do they show variation?