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

[Jennifer J]

The questions being asked are good questions, but some of them are so far in advance of current research that answers would be highly speculative at this point in time. This type of research will probably be fruitful for years, and most of the questions might be answerable in five to ten years, but I doubt most will be answered this year, or even next year.

Having said that I am only too happy to hear speculations, provided they are clearly labelled as hypothesis, speculation, etc.

Laying in bed before going to sleep last night, I was thinking about this study. I know there's a lot that is unknown at this point. Initially I was thinking of the first thing I would do if I was restored to the old me. Then I was wondering about work and finances.

I know it's very early, answers would be speculative, and there is a lot of variables and unknowns.

I was wondering in regards to this study:

How quickly does anyone think there could be something to restore our health?
Would the improvement in health happen quickly or slowly over time?
Would it be more trying different things to see what works?
Would it be an on going treatment?
Would we be completely restored (to the age we are now) as if we never had ME (not counting having to build up muscle strength...)?
Would there be areas of the body affected and harmed by all the complications of this disease (probably), especially living with it for so long?

As many here I'm struggling financially, decisions I make at this moment in time I would want to take into account the possibility, probability and likely time frame of these unknowns. I can't stop thinking about this study! This is exciting. As always there's hope that anything can change for the better at any moment with help, discovery and treatment.

Any ideas and speculations?

 

[Forbin]

@Ben Howell

Another question (related to my earlier one) for either Dr. Naviaux or Dr. Davis:

Regarding the elevated cytokines seen in the first three years of illness by Drs. Lipkin and Hornig - could those persistently elevated cytokines themselves be the persistent environmental stress that is launching this dauer-like state?

Thanks!

 

[Kati]

Laying in bed before going to sleep last night, I was thinking about this study. I know there's a lot that is unknown at this point. Initially I was thinking of the first thing I would do if I was restored to the old me. Then I was wondering about work and finances.

I know it's very early, answers would be speculative, and there is a lot of variables and unknowns.

I was wondering in regards to this study:

How quickly does anyone think there could be something to restore our health?
Would the improvement in health happen quickly or slowly over time?
Would it be more trying different things to see what works?
Would it be an on going treatment?
Would we be completely restored (to the age we are now) as if we never had ME (not counting having to build up muscle strength...)?
Would there be areas of the body affected and harmed by all the complications of this disease (probably), especially living with it for so long?

As many here I'm struggling financially, decisions I make at this moment in time I would want to take into account the possibility, probability and likely time frame of these unknowns. I can't stop thinking about this study! This is exciting. As always there's hope that anything can change for the better at any moment with help, discovery and treatment.

Any ideas and speculations?

Hi @Jennifer J you are asking big questions!!! I think the best answer would be 'we don't know yet'. We are in unchartered territory. There is so much work that needs to be done by science and not enough funding. Treatments need to be validated through clinical trials, but first, it would be great to know if the problem reside from our genes, auto-antibodies or from a known or unknown infectious agent (virus, bacteria, fungus) which regulates the dysfunctions in our body.

While the metabolomic study provides important clues, so much more needs to be discovered. For instance, comparing this signature with other diseases. Adding more information like brain scans, antibodies, gene expression, microbiome, and cerebro-spinal fluid metabolomics.

It is hard to tell how quickly we will get these answers. It will depend on the level of funding and the interest that science has in digging further.

 

[Gingergrrl]

Great posts above by Jennifer and Kati and I have also been lying awake at night thinking of these questions and how do we get more funding for our scientists?

It also puzzles me why mainstream medicine and scientists (in the US) are not more interested in this when there are major profits to be made by Pharma? I have seen several doctors who told me in their entire career I am the first patient they met with n-type calcium channel antibodies yet in the next breath dismissed it as not the cause of my symptoms.

If they've never seen it before, how could they possibly know that!!! It's like all intellectual curiously is just gone. What if ME/CFS is an ion channelopathy? Or what if I have a rare disease yet to be named? Yet 99% of doctors do not care! Thank God for my doctor at OMI, my Mast Cell doctor, and Dr's. Davis and Naviaux. This is the most hopeful I have felt in two years.

 

[dreampop]

Here is another question, @Ben Howell, for Naviaux; if dauer is the opposite state of the CDR, and if suramin was theorized by him as a possible treatment for the CDR, would an P2X agonist be a possible treatment for dauer?

2 ) Also, does his study shed any light on the findings that Leptin is correlated with symptom severity.

3) Will Davis look for genetic problems in the purine receptors, and their related systems, as a possible relation to the creation of a dauer state. I say this because I never had good endurance before I was sick and I'm wondering if some seemingly minor problem activating ATP that fails to open channel, and that minor problem could prevent someone from exiting dauer.

 

[PDXhausted]

A thought: we've heard anecdotal evidence that pregnancy can put ME/CFS into remission or possibly reverse it.

I believe it's thought that the surge in progesterone during pregnancy is meant to shift the immune system to prevent the body from attacking the fetus. However, I haven't heard of any cases of remission by using progesterone cream (which can sometimes come in high doses), or progestin birth control (e.g. Depo provera), and my personal experience with combined oral contraceptives is that it made my CFS symptoms much worse, and possibly was part of the trigger that got me into this state, though that may not be the experience of all OCP-using PWME.

Anyway- my point being, there must be some other metabolic change(s) that happens during pregnancy to possibly kickstart the metabolism out of this state... I wonder if that could be investigated or studied to look for clues.

 

[alex3619]

Anyway- my point being, there must be some other metabolic change(s) that happens during pregnancy to possibly kickstart the metabolism out of this state... I wonder if that could be investigated or studied to look for clues.

Pregnancy involves a highly anabolic state. Its accelerated metabolism. Maintaining hypometabolism in that state might be very difficult. However pregnancy might itself wind up as a trigger for hypometabolism, at least theoretically. Once the pregnancy ends there might be a rebound. I would like to know if anyone who improved during pregnancy was better or worse off after the pregnancy ended.

 

[necessary8]

Man, this all is really amazing news. Reading Naviaux's paper, and hearing all the things form Dr Davis really gives me hope to keep going, like nothing else. I thank them so much for the communication with us that they're doing here.

@Ben Howell , since you're gathering questions for Dr Davis, I wanted to ask if the raw data from the Severly Ill Big Data study will be released to the public so that anyone can do independent analysis? If I understand correctly, the data for phase 1 is already gathered and it's the analysis that's a major hurdle, right? And Dr Davis said here, that he wants the world's researchers to cooperate on this, not compete. So releasing the data would sound like a good move towards that goal. (If the data is already released and I just can't find it then my bad, point me to it). And if they don't plan to release the data, what's the reason behind it?
I'm mainly asking because I was thinking about reaching out to a few people I know in academia, and if the data was public, I could maybe ask them to help analyze it. Or maybe they could think of novel, better ways to analyze it. If the data was public, people could try a bunch of new approaches (anyone tried machine learning yet?), and most of them will probably fail, but if a lot of people try, one person could find something useful. What does Dr Davis think about something like that?
Forgive me if I'm making some stupid assumptions here, I don't know this subject from the inside. If someone form OMF could explain more in detail the hurdles that the project is currently facing, that would be amazing (but I realize that this might be too complicated to waste time explaining to us).
And my final question - is there any other way that the patient community can help further the research, aside form the obvious donating and raising awareness?

 

[trishrhymes]

Hi necessary8.

I have just checked on the Open Medicine Foundation website and the answers to your questions about data release are there.

They are going to release the data and are currently working on a new computer program to store and make available all the billions of data points, and working on ways to analyse it. It looks as though it's a hugely complex process.

I think it's wonderful that they are willing to be so open with the data, but personally I'm willing to trust the world class experts involved to do this analytical task on our behalf, and summarise it in a form we can understand.

Here's a link that may interest you:

http://www.openmedicinefoundation.o...a-new-computer-program-for-big-data-analysis/

 

[justy]

Hi @Gingergrrl

Yes an autoantibody panel is part of the Severely Ill BIG DATA study. Samples have recently been collected for all patients.

Here is the full list of tests for each patient:

It ain't just metabolomics


B

wow that's a great list (even with the testing issues with Lyme and Bartonella)

I noticed cell Free DNA being tested - Dr Myhill has been testing this in her patients for years. My cell free DNA came back at around 26 - people on chemo are at around 28 and people with flu around 24. I know mine was high as patients go - I wonder what they are finding in the severely ill patients with regard to this marker and also what does it really mean? I haven't been able to found out a great deal about it, apart from in people with cancer.

 

[mermaid]

wow that's a great list (even with the testing issues with Lyme and Bartonella)

I noticed cell Free DNA being tested - Dr Myhill has been testing this in her patients for years. My cell free DNA came back at around 26 - people on chemo are at around 28 and people with flu around 24. I know mine was high as patients go - I wonder what they are finding in the severely ill patients with regard to this marker and also what does it really mean? I haven't been able to found out a great deal about it, apart from in people with cancer.

Goodness me, that is high @justy I just checked mine, and first time it was 17.3, but I am pleased to say that 4 years later it had gone down to 15.2. I would like to think it had reduced further since that last test 3 years ago. I don't know what it means either but I have improved this year (apart from getting the retinal detachment LOL).

 

[Ritto]

my Cell Free DNA, from Myhill, was 29.4 That was eight years ago, not been able to do it again. Didn't really appreciate it was very high before Justy's post.

 

[cigana]

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.

All very good questions. I think that if we as patients, particularly here on PR, can start to use some of the now privately available metabolomics tests and share results then we might be able to answer these and more!

 

[Sea]

thanks for your reply... I have related it to the dryness, major dry eyes and mouth which I experience 24/7... Hope the other eye stays free of fraying!

Have you been investigated for Sjrogens syndrome?

 

[ahmo]

Donations to further this incredible research with OMF can be made here:

http://www.openmedicinefoundation.org/donate-to-the-end-mecfs-project/

 

[ScottTriGuy]

privately available metabolomics tests

Is there a handy list somewhere?

 

[cigana]

Is there a handy list somewhere?

Don't know of a list, but sounds like OMI will be launching something and there is Kenkodo.

 

[rosie26]

wow that's a great list (even with the testing issues with Lyme and Bartonella)

I noticed cell Free DNA being tested - Dr Myhill has been testing this in her patients for years. My cell free DNA came back at around 26 - people on chemo are at around 28 and people with flu around 24. I know mine was high as patients go - I wonder what they are finding in the severely ill patients with regard to this marker and also what does it really mean? I haven't been able to found out a great deal about it, apart from in people with cancer.

I'd love to have that tested to see what mine reads. I've often have said to people that I feel like I am having chemo treatment. When I fell sick with severe ME it felt like I was in the last stage of cancer - only a week or two left.

In the last three years since the very moment menopause began (first missed period - not kidding) my ME deteriorated again with a new pathway added to my existing ME. I now have heat that causes break-out sweating all over - never had that kind of sweating before. Also feel very allergic and my hands (cracking skin) are the worse than they have ever been. Lots of heat in my chest. I now don't get the severe heat in my head with headache (very rare to get this now), but I am getting it severe in the chest. This heat feels like the sterilizing kind. I really hope it settles down.

 

[necessary8]

Hi necessary8.

I have just checked on the Open Medicine Foundation website and the answers to your questions about data release are there.

http://www.openmedicinefoundation.o...a-new-computer-program-for-big-data-analysis/

You know, I went a few times on that website and looked for exactly that kind of post but could not find it. I must be blind or something. Thank you very much for linking it. : ) That pretty much answers my first 2 questions. I will be awaiting the release of the data then.

 

[Firefly_]

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.

For me also