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

Discussion in 'Latest ME/CFS Research' started by Ben H, Aug 30, 2016.

  1. Ben H

    Ben H OMF Correspondent

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    Hi Guys,

    As promised, and huge thanks goes to @Rose49 and Linda Tannenbaum at OMF for orchestrating this. I am just the messenger here!

    As you have no doubt seen the metabolomic study with Dr Naviaux, here is Professor Ron Davis, Director of OMF scientific advisory board (and all round hero) response to the studies findings:





    Added to this is a Q and A with Dr Naviaux expanding on some key aspects of the study:


    Enjoy!


    B


    [/QUOTE]






    Lots to take in guys. Hope you enjoy it-huge thanks to @Rose49 , Ron, Linda and Dr Naviaux, and the whole OMF team. These guys are working so hard for us, it's unbelievable.

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


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



    Thanks so much,


    B
     
    Last edited: Sep 12, 2016
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  2. Cheesus

    Cheesus Senior Member

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    I remember seeing a study of epidemiology a while ago discussed on this forum, which said that onset for women was most likely in their teens and thirties, with women in their twenties relatively less likely to become sick. There was much head-scratching in the thread at the time as none of us knew why that would be the case.

    It looks like we could have a partial explanation here.

    ETA: Just for the sake of being complete, here is that study:

    http://forums.phoenixrising.me/inde...10-19-30-39-norwegian-population-study.32890/

    Turns out it wasn't just for women, but for men too.
     
    Last edited: Aug 30, 2016
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  3. Sasha

    Sasha Fine, thank you

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  4. alex3619

    alex3619 Senior Member

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    This affirms one of my thoughts, that there might be different tests for male and female patients. This will improve reliability of the tests.

    PS This does not mean two different test kits, they could be combined in one kit.
     
    Last edited: Aug 30, 2016
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  5. msf

    msf Senior Member

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    I appreciate Prof Davis´s efforts on behalf of the ME community (before anyone accuses me of being ungrateful), but I have to disagree with his comments here:

    ´Another important finding from this study is that the metabolomic response observed in ME/CFS is opposite to the pattern seen in acute infection and metabolic syndrome. This result supports the controversial idea that while infection is often the initiating event for ME/CFS, it does not contribute to the ongoing illness. 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.´

    Naviaux et al. were very careful not to rule out ongoing infection, and actually suggested that the abnormalities might be the body´s response to an ongoing infection.

    Also, he seems to elide the distinction between ´acute infection´ and ´active infection,´ as well as ´latent infection´ and ´chronic infection.´ The former would not justify the use of antimicrobials, the latter might.
     
    Last edited: Aug 30, 2016
  6. Cheesus

    Cheesus Senior Member

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    Every time I visit PR I have a little nugget of hope somewhere deep down - almost subconscious - that I am going to be greeted by something special, something that will give me cause for relief and positivity about the future. The sentence quoted above encapsulates that which I am always hoping for, and I am loving every second of it.
     
  7. halcyon

    halcyon Senior Member

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    I'd say that just because this state doesn't look like acute infection doesn't preclude it being a chronic one. His interpretation of this seems to differ from Naviaux's:

     
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  8. Ben H

    Ben H OMF Correspondent

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    Hi @msf

    I think the idea is that without substantiated evidence for infection thus far, despite an obvious infectious trigger for some, that abx, AV's or whatever are not going to help or make us worse, is perfectly reasonable. Heck, how many of us have taken abx or AV's and got permanently worse (and I do not mean a herx response for abx)? I know of many-anecdotal I know. I appreciate they help some but I think what Professor Davis is saying is perfectly reasonable, with emphasis on his use of 'plausible'.



    @Rose49 may be able to elaborate at somepoint.



    B
     
    Last edited: Aug 30, 2016
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  9. msf

    msf Senior Member

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    It may be a reasonable view (although I think it´s wrong), but it is not a reasonable conclusion to draw from the Naviaux paper - as I pointed out, the authors were very careful to leave this door (persistent infection) open.
     
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  10. msf

    msf Senior Member

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    Thanks for bothering to find the quotes, Halycon, it makes me look less like a contentious ass.
     
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  11. Marky90

    Marky90 Science breeds knowledge, opinion breeds ignorance

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    You cant close the possibility of active infection out, but there is no good reason to strongly assume that it`s probable at this point.

    By the way thanks for the comments from the professors. Absolutely delightful.
     
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  12. frog_in_the_fog

    frog_in_the_fog Test Subject

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    Well ain't this a huge kick in the pants for all them fancy PACE advocates.
     
  13. mango

    mango Senior Member

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  14. lansbergen

    lansbergen Senior Member

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    I agree
     
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  15. A.B.

    A.B. Senior Member

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    There seems to be an, in my view, unjustified assumption that the hypometabolic state is maladaptive.

    I have some doubts about that because there is figuratively speaking, an army of patients constantly experimenting with supplements. Most seem to have had some limited success, but everyone is still ill.

    Aside from serine these have been tried in endless combinations at varying dosages by patients. The typical result seems to be that people report feeling a bit better (occasionally worse) but these don't seem to result in any substantial improvements in functioning. Occasionally someone will report impressive results, but we also know from experience that often this is only a temporary high. Why people relapse isn't clear, but it could be that the body readjusts to the level of function it deems appropriate - which is low.
     
    Last edited: Aug 30, 2016
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  16. Jenny TipsforME

    Jenny TipsforME Senior Member

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    That was my first thought too. Wasn't there also something about mid-30s relapse?
    I got ill at 19 (so end of the younger group). In my 20s managed to get back to 95% after a bad dip (never fully recovered). Had bad relapse at 34 which doesn't seem to respond to strategies I used successfully in my 20s. Perhaps my metabolism has problems that improve in your 20s?
     
    Last edited: Aug 30, 2016
  17. shannah

    shannah Senior Member

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    Under Conclusions:

    The study of larger cohorts from diverse geographical areas, and comparison with related medical disorders like depression and posttraumatic stress disorder, will be needed to validate the universality and specificity of these findings.

    Why compare specifically with these disorders. Why not compare with MS or other?

    There must be a reason these were chosen for comparison. I can speculate but would like to know their reasoning.
     
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  18. voner

    voner Senior Member

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    Thanks for your post @halcyon.

    After reading the paper and the comments from Drs Davis and Naviaux, It does seem like they are saying that ME/CFS is characterized by this threat induced hypometabolic state which is stuck "on". Why it is stuck "on" is unknown, or it could be like the initial kickoff of this Hypometabolic state , have a multitude of reasons why it is stuck "on". Sorting through these reasons why would be part of the teatment process.
     
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  19. alex3619

    alex3619 Senior Member

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    Here is my guess, though they can speak for themselves.

    MS is a clear immune assault. Symptomatically its similar, but at this point we have no good grounds, that I am aware of, to presume its metabolic profile is similar.

    Alterations in biological adaptation exist within medicine, and include depression. Its possible a subset of depression may have similar biochemistry, and that is important to know. Even if it does, however, that does not mean ME or CFS is depression. It might, for example, mean these patients who are classified as having depression actually have something else, and they need to be removed from the depression classification. What that will do however is decrease the specificity of the diagnostic test, though after investigation it might turn out these depressed patients do have ME or something similar and are being misdiagnosed.

    PTSD is less clear. That does baffle me a bit. It is however an acute brain response to overwhelming stimuli, with long term changes to the brain. It is not clear there are long term metabolic changes, but its an intriguing question.

    This is not about looking at similar symptomology ... its more about looking at potentially similar metabolism. The more separable you can show the test to be, the better.
     
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  20. alex3619

    alex3619 Senior Member

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    My best guess is its less stuck on than the off button is broken. We need to find that button.
     

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