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

[Strawberry]

@Research 1st

You provided a great set of questions. The one I am most interested in is the head injury (concussion) because I met 2 people with ME that both had concussions. One person had repeated concussions, while playing sports. The other had one concussion in an auto accident.

Thanks!

GD

BTW- I saw the movie 'Concussion' with Will Smith.

@Groggy Doggy, if you are keeping a list, I have a head injury and a neck injury. I have always wondered if they were linked. I had CFS before the neck injury, but I started getting worse after the injury.

 

[Amused]

@BenHowell

I have 2 questions. I should say I'm totally ignorant about biology/science and I suspect the reason no one else is asking these is because the Naviaux paper and other commentary shows why, because they have knowledge.

Anyway.
1. Why will the blood have to go to Dr Davies at Stanford? The cheaper way of testing that Lauren (? sorry brainfog, might have the wrong name) is organising per what Rose said. Is it because particular machinery is used that isn't available in other countries/ labs? Is it because of the particular way the tests are done? Is it because Dr D needs to have the blood in his lab for quality control or similar? Are such tests, I don't know the terminology, patented? so only Dr D and his staff know how to do them? (all actual genuine questions not being snitty, want to understand).

2. I asked this of Jaime S on her stonklingly good ME Action article about the Naviaux paper and how it may fit with other ongoing research & biomedical findings. But, maybe this is a better place. People are saying about the need for replication - presumably on new people's blood by other researchers in other labs.

I remember getting very hopeful and excited when the XMRV finding was made, and devasted when it turned out to be some accidental contamination, perhaps involving mice? the details are very hazy. Anyway, hopefully it's not rude of me to raise it, but, what's the risk that the Naviaux results have some accidental fundamental mistake, that when others try and replicate they can't? Are there checks and balances because of the XMRV (and other probable disasters to trials I've not heard of) that means it's unlikely?

This does seem an exciting starting point but. I'm not sure I can cope with another disappointment like the XMRV so I'd quite like some very simple not technical (cos I won't understand it without lots of explanation) reassurance as to why it's unlikely to happen with this? Then I'll feel a bit happier about being excited....

Finally, thankyou very much to Dr Davies and Rose for engaging with the patient body. We can be difficult at times, but it's not intentional, it's due to past disappointments and the frustration of being trapped in this half life we don't want. Despite me not wanting to be excited then disappointed I've made a small donation to the OMF in thatnks for what you are trying to do. I appreciate it hugely.

 

[Groggy Doggy]

@Groggy Doggy, if you are keeping a list, I have a head injury and a neck injury. I have always wondered if they were linked. I had CFS before the neck injury, but I started getting worse after the injury.

Hi @Strawberry

So you had a head injury before CFS and the (post CFS) the neck injury makes your symptoms worse? What kind of head injury, if you don't mind me asking?

Yes, I think head injuries can cause disruptions to our endocrine system. IMO it should included on every intake form as part of detailing our health history.

http://emedicine.medscape.com/article/326123-overview

 

[Ben H]

@BenHowell

I have 2 questions. I should say I'm totally ignorant about biology/science and I suspect the reason no one else is asking these is because the Naviaux paper and other commentary shows why, because they have knowledge.

Anyway.
1. Why will the blood have to go to Dr Davies at Stanford? The cheaper way of testing that Lauren (? sorry brainfog, might have the wrong name) is organising per what Rose said. Is it because particular machinery is used that isn't available in other countries/ labs? Is it because of the particular way the tests are done? Is it because Dr D needs to have the blood in his lab for quality control or similar? Are such tests, I don't know the terminology, patented? so only Dr D and his staff know how to do them? (all actual genuine questions not being snitty, want to understand).

2. I asked this of Jaime S on her stonklingly good ME Action article about the Naviaux paper and how it may fit with other ongoing research & biomedical findings. But, maybe this is a better place. People are saying about the need for replication - presumably on new people's blood by other researchers in other labs.

I remember getting very hopeful and excited when the XMRV finding was made, and devasted when it turned out to be some accidental contamination, perhaps involving mice? the details are very hazy. Anyway, hopefully it's not rude of me to raise it, but, what's the risk that the Naviaux results have some accidental fundamental mistake, that when others try and replicate they can't? Are there checks and balances because of the XMRV (and other probable disasters to trials I've not heard of) that means it's unlikely?

This does seem an exciting starting point but. I'm not sure I can cope with another disappointment like the XMRV so I'd quite like some very simple not technical (cos I won't understand it without lots of explanation) reassurance as to why it's unlikely to happen with this? Then I'll feel a bit happier about being excited....

Finally, thankyou very much to Dr Davies and Rose for engaging with the patient body. We can be difficult at times, but it's not intentional, it's due to past disappointments and the frustration of being trapped in this half life we don't want. Despite me not wanting to be excited then disappointed I've made a small donation to the OMF in thatnks for what you are trying to do. I appreciate it hugely.

Hi @Amused,

To answer some of your questions:

1.) The lab is at Stanford where Laurel is working with Ron. The technology/machine used is specialist, and expensive. Many Universities have this type of equipment, but very few are using it for ME/CFS

2.) Replication is important for many reasons. In this preliminary study, if the findings are replicated, we will have a biomarker for ME/CFS. It needs to be replicated to make sure that the findings were not just isolated to the participants in the study, though I believe this unlikely due to various reasons-replication is mainly for validity and reliability, and to help determine if there are any extraneous variables-an independent study would be useful here. Double checking essentially.


This is very different to XMRV, and the testing is very robust. The chances that the results are due to lab contamination is extremely unlikely (I want to go further than that but wont). This is not the sort of thing that could be contaminated in the same manner as XMRV- we are not testing for viruses directly here, we are testing for metabolites, or metabolic byproducts in the blood. The samples are very sensitive for metabolomics in terms of storage, but it was run by Dr Naviaux and team at UCSD and I have complete faith in him and his methods. It is not comparable in the slightest to the XMRV debacle.


Thankyou so much for your donation. You are helping fund further research with OMF and Prof. Davis and Dr Naviaux, and the entire team


B

 

[Amused]

Hi @Amused,

To answer some of your questions:

1.) The lab is at Stanford where Laurel is working with Ron. The technology/machine used is specialist, and expensive. Many Universities have this type of equipment, but very few are using it for ME/CFS

2.) Replication is important for many reasons. In this preliminary study, if the findings are replicated, we will have a biomarker for ME/CFS. It needs to be replicated to make sure that the findings were not just isolated to the participants in the study, though I believe this unlikely due to various reasons-replication is mainly for validity and reliability, and to help determine if there are any extraneous variables-an independent study would be useful here. Double checking essentially.


This is very different to XMRV, and the testing is very robust. The chances that the results are due to lab contamination is extremely unlikely (I want to go further than that but wont). This is not the sort of thing that could be contaminated in the same manner as XMRV- we are not testing for viruses directly here, we are testing for metabolites, or metabolic byproducts in the blood. The samples are very sensitive for metabolomics in terms of storage, but it was run by Dr Naviaux and team at UCSD and I have complete faith in him and his methods. It is not comparable in the slightest to the XMRV debacle.


Thankyou so much for your donation. You are helping fund further research with OMF and Prof. Davis and Dr Naviaux, and the entire team


B

Thankyou very helpful. I feel reassured!

 

[Amused]

@BenHowell I have another question - I've read somewehre that Dr Naviaux is onto a second study following up from this one. Where can I find information about that? thanks.

 

[Ben H]

@BenHowell I have another question - I've read somewehre that Dr Naviaux is onto a second study following up from this one. Where can I find information about that? thanks.

Hi @Amused

Here:

http://www.openmedicinefoundation.org/mecfs-severely-ill-big-data-study/

Be sure to sign up to the newsletter to let you know what your donations are helping towards, and all the results that are found

http://www.openmedicinefoundation.org/newsletter-sign-up/

Thanks!


B

 

[Amused]

I think after I donated I got a screen saying i'd been signed up for the newsletters. I'm a dunce and ostrich like about technical medical stuff I tend to wait for articles like the one by JaimeS on the MEAction FB page to find out what research results mean....

 

[Ben H]

I think after I donated I got a screen saying i'd been signed up for the newsletters. I'm a dunce and ostrich like about technical medical stuff I tend to wait for articles like the one by JaimeS on the MEAction FB page to find out what research results mean....

Thats good!

Don't worry, this stuff is pretty technical! And with ME/CFS it makes it 100x harder!


B

 

[Amused]

I can't blame the me/cfs I've always been a dunce at science.... and maths.... and since I got severe, I reckon as i don't get to do things I want to do, I don't see why I should do things I don't want to do or am not particularly enticed by.

I know it's lazy but I just want answers on a plate.

If I had a broken leg, A&E wouldn't consult me about the best way to deal with it. They'd just get on with fixing me. I want that, I want to be fixed without me having to have a DIY professional level knowledge of science & medicine.

Having read that linky about what they are doing now the Big Data project, very interesting. Though I didn't quite grasp what they meant about the difficulties of testing severely affected people whilst in PEM, that it would have to be constant? - this bit quote
[Working with the most severely affected patients is also likely to give good biomarker signatures although they probably will not be able to enter a state of post exercise malaise unless they are constantly in this state. ] endquote. In the Further Details link.

My PEM is like clockwork. I had a shower on Wednesday (or more accurately I'm physically present whilst the carer does it all), I'm mostly asleep and buggered until Saturday for example.... But then i'm moderately severe. Not severe severe like Dr Davis' son. And I have to say, I do avoid doing stuff to avoid the PEM.....

 

[mermaid]

I've had a retinal lesion. At first they thought it was a detached retina.
Always thought it might be a Lyme symptom.

I did not know what a retinal lesion was, but I have looked it up now. Glad to hear that your retina was not detached anyway.
I ended up puzzling about causes of all of my eye problems too and as I seem to have some Fatty Acid issues... wondering about that, but really don't know.

 

[ahmo]

Knowing that treatment studies have not yet been done, my son is wondering if there are things that are generally good for mitochondrial health that he could be doing now, and things that he should avoid?

http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

http://forums.phoenixrising.me/index.php?threads/reverse-mitochondrial-damage-101.28175/

Mitochondria 101 Part 2
http://forums.phoenixrising.me/index.php?threads/mitochondria-101-part-2.29249/#post-446295

Poisoning the Mitochondria
http://forums.phoenixrising.me/index.php?threads/poisoning-the-mitochondria.27790/

Mitochondrial Dysfunction
http://forums.phoenixrising.me/index.php?threads/mitochondrial-dysfunction.12947/

http://forums.phoenixrising.me/index.php?threads/resveratrol-mitochondria.25884/

 

[mermaid]

@Starfive and others who posted about retinal detachment. Another documented cause is Fluoroquinolone antibiotics which can cause retinal detachment but many people do not know this. It may not pertain to your situation but wanted to mention it just in case. All my medical charts say "No FQ antibiotics" including at my eye doctor so I am never given an FQ eye drop.

Thank you @Gingergrrl I am relieved to say that I have not taken these antibiotics to my knowledge. Very good to point it out though.

 

[BurnA]

@Ben Howell if you don't mind I have a question -

At iime conference 2016 Maureen Hanson presented a slide from a metabolite study which indicated 100% success at identifiing ME/CFS patients from controls. Do we have any info on whether Dr. Hansons results correlate to Naviaux's results ?
I appreciate you may not know the details of Hanson's study, no problem if not.Tks.

 

[Plum]

@Ben Howell and anyone else.... I am curious how some of us have ME and an inflammatory disease?

According to my understanding of Naviaux's research they show up very differently.

"we found that the direction of CFS abnormalities was opposite to metabolic syndrome (37) and opposite to the metabolic response to infection, inflammation, or environmental stress that has been called the CDR".

How is it possible then that I see lots of ME patients discussing inflammatory diseases that they have as well as their ME? (I am talking about chronic inflammatory conditions not acute ones). Unless I have misunderstood (brainfog...) and the inflammation referred to in the research is of an acute nature?

 

[dancer]

@Ben Howell if you don't mind I have a question -

At iime conference 2016 Maureen Hanson presented a slide from a metabolite study which indicated 100% success at identifiing ME/CFS patients from controls. Do we have any info on whether Dr. Hansons results correlate to Naviaux's results ?
I appreciate you may not know the details of Hanson's study, no problem if not.Tks.

Dr. Hanson gave a webinar with Solve ME/CFS today, and showed charts comparing and contrasting her study with the Naviaux study. Yes, there was a great deal of convincing similarities in findings.

 

[Snowdrop]

@BurnA
If you haven't seen it already have a look here for answer to Q: http://forums.phoenixrising.me/index.php?threads/maureen-hansons-presentation-at-solve-cfs.46580/

Edit: what dancer said. Just saw her response.

 

[simeyss]

@Ben Howell

As you are kindly collecting questions, I have one too (though I doubt there will be an answer, but I'm interested even if Drs Naviaux & Davis have a hunch about this):

If more evidence is gathered supporting this notion of ME/CFS being a dauer-like state, I wonder about treatment. Many people try treatments, which might have some benefit for a while before losing their efficacy, suggesting a homeostatic quality about the state. Is treatment likely to be a matter of bringing us out of the state safely and then we're done (which, granted, may take time), or is it likely that treatment will require ongoing maintenance to keep us that way?

 

[dreampop]

@Ben Howell Here are my questions, sorry if they are redundant.

1) Did the 600 metabolites include a snapshot of the brain's metabolic state vs the body's metabolic state? If not would it be possible to study that? I.e. a metabolic profile of the cerebral spinal fluid vs the blood.

2) Can the hypometabolic state be taken to directly cause the symptoms of fatigue & PEM? Or is it further up the chain.

3) Will they profile the metabolic state of Fibromyalgia?

 

[halcyon]

2) Can the hypometabolic state be taken to directly cause the symptoms of fatigue & PEM? Or is it further up the chain.

I'd like to hear Naviaux's take on this as well from his perspective; what could be some hypothetical explanations of PEM, specifically the immune activation symptoms, under this model?

I'd also be curious to hear thoughts on how our selective neuropathies could be explained as well.