A New Decade of ME Research: The 11th Invest in ME International ME Conference 2016
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Dr. Ronald W. Davis Answers Patient Questions: Q and A follow-up to 2/21/17 Research Update

Discussion in 'Latest ME/CFS Research' started by Ben H, Mar 7, 2017.

  1. btdt

    btdt Senior Member

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    This is an old quote you may find interesting a quote of a quote if you like....from here
    http://survivingantidepressants.org/index.php?/topic/6329-chronic-fatigue-prozac/
    "
    here is a bit of a story a comment on a this post here





    "I am on my eleventh year with a serious metabolic disturbance from making the mistake of taking 1/2 to 1 mg daily dosage of risperdal back in 2001. The misinformation concerning these drugs has created something of a crackhouse environment way of conducting psychiatry today. In anycase the following quote comes from an article "Depression: a metabolic perspective" Richard Fiddian Green 27 October 2012, BMJ. Its interesting that a simple accurate factual voice (R.F. Green's voice that is) on what anti depressants and antipsychotics really do in the real world shows up in the British Medical Journal. Why such common sense approaches does not show up with the APA is bewildering? In anycase here is the quote:

    "Conventional drug therapy leaves much to be desired from the metabolic perspective and needs to be re-evaluated with some urgency. If administered to persons whose capacity fro replenishing intraglial glycogen and intraglial and intraneuronal ATP stores is impaired mood elevators that act by enhancing neurotransmitter release and increasing the slope of neuron action potentials may compound the severity of the energy deficit present by increasing the demand for ATP hydrolysis beyond the capacity to replenish ATP stores. Any severity of any energy deficit present is likely to be compounded by those antidepressants that impair mitochondrial oxidative phosphorylation. It might also be compounded by drugs used to treat co-existing cardiovascular disorders, notably beta blockers and statins. Of great concern is that any medication or mixing of medications that either induces or compounds the severity of an intracerebral energy deficit might increase the likelihood of developing neurodegenerative disorders in later years especially if the medications are administered for extended periods." end quote.

    The above from 2003 is a simple factual illustration of the cause and effects of anti depressants and antipsychotics on a patient's metabolic profile. Yet it seems the APA has trouble addressing these facets of the medications while all the other scientific and medical journals and research studies thankfully honestly relate the implications and nature of what the neuroleptics do. Kafka's cockroach may be running the APA these days, who knows."



    about spells it out but does not say how to fix it since he has had it 11 years guess he has not found a cure either...

    http://thelastpsychi...itting_su.html

    posted by Harry Horton if you want to find the exact post
     
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  2. btdt

    btdt Senior Member

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    It seems to me that a lot of different drugs can kick start this problem.. antibiotics antidepressants drugs to grow you hair... can't think of the name of it... the symptoms post use seem the same... and they are also fund raising for research...

    it is here:

    http://www.pfsfoundation.org/research/




    Why Research Into PFS Is Necessary
    Determining the underlying biologic mechanisms of post-finasteride syndrome requires further clinical and basic science research.

    Through such research, we aim to uncover the underlying biologic mechanisms of PFS while broadening media, medical and scientific awareness of the syndrome to better enable:



    • Identification of novel PFS risk factors (genetic predispositions or otherwise) in a subset of the population
    • Identification of novel underlying biologic mechanisms for the syndrome and why it persists even after quitting the drug
    • Development of effective treatments for PFS patients worldwide


    Research Goals
    Current research is focused on determining underlying biologic mechanisms for the syndrome at a molecular level, as will future initiatives. Specifically:



    • Genetic risk factors for PFS
    • Androgen receptor expression in PFS patients
    • Hormonal profiles of PFS patients
    • Full genome gene expression profiles and pathway analysis in PFS patients
    • Proteins encoded by androgen responsive genes (ARGs)
    • Neurosteroid levels in PFS patients
    • Epigenetic chromatin alterations in PFS patients




    I wonder if they will find some of the same things as the symptoms ... to what I can recall very much like wd from ads or cfs... in my understanding.
     
  3. Notjustfatigue

    Notjustfatigue

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    @Ben Howell

    Hi Ben!!

    This is an ME mate from Spain.

    I would want to know, if possible, what Ron thinks about LDI therapy and if it would be possible that you pass him that article written by an spanish friend, @serg1942. We are a group of spanish ME mates that are thinking about giving that therapy a try and will be very pleased to know what Ron do thinks about it.

    The paper itself is in the first post of this thread:

    Thanks in advanced.

    Best wishes.
     
  4. JollyRoger

    JollyRoger Senior Member

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    I wonder how the effect of Ampligen or LWRnase fits into this theory.
    If it's a on/off switch then there would be no relapse after the therapy.

    Are the results of the last trials in Norway and California sufficient to absolutelydebunk the chronic virus infection?
    Because the epidemic outbreak of CFS in some cases still puzzles me....

    P.s.: I absolutely prefer the non viral explanation.
    Taking antibiotics and expensive antivirals for months are not so attractive.
     
    Last edited: May 29, 2017
  5. mariovitali

    mariovitali Senior Member

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    @HopeSpringsEternal

    May 3rd 2015 :


    Add to that a Liver stressor such as EBV and other viruses having the same effect.



    I emailed several Stanford Researchers in 2015 asking them to consider this hypothesis. No luck so far, 2 years later


    http://forums.phoenixrising.me/inde...ponse-and-a-possible-treatment-for-cfs.37244/

    and

    http://algogenomics.blogspot.com/2017/05/machine-learning-nlp-and-network.html

    I am symptom-free for about a year now. I emailed OMF one month ago. No reply.


    @Manganus

    There is nothing wrong with the immune system in my opinion. Even on the summer, if you take several P450 Inhibitors at the same day you will have many symptoms coming up. Please don't try this at home!
     
    Last edited: May 29, 2017
  6. Janet Dafoe (Rose49)

    Janet Dafoe (Rose49) Board Member

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    Please email OMF again. Linda is good about answering emails but she has been busy and has been traveling so she may have gotten behind. And start a convo with me with those links on it so I can ask Ron. It's hard to look through threads and find stuff. Thanks!
     
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  7. Michael_venice

    Michael_venice

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    I wonder if any doctor or clinic would be able to devote the time, tracking and resources to come up with protocols that would be so individualized. I think it would be great. Great to have lists of 'safe' supplements (they seem to constantly change fillers, etc), dietary direction rather than just trying every single new one that pops up and becomes the thing for a year or so, the ongoing monitoring, tracking, adjusting, checking in, very individualized guidance.

    My doctors now already seem utterly overwhelmed just with a check in, very very often things get lost in the shuffle (should I continue X diet? The ever-expanding list of supplements and meds? At what point do we call it a day on some new wretched treatment (you'll get worse before you get better)? Can you fight my insurance on 3 different new things? How the hell will I get all these tests done if I'm homebound?). And I'm not knocking them, they spend extraordinary amounts of time and presence. I still feel like I get in less than 20% of what we should be talking about most of the time. Despite that huge time investment they give, it still comes down to a model of 'try these things and let me know how it's going in 4-6 weeks'. In the meantime, I genuinely feel like I could drop dead at least 3 days a week with ever-cycling symptoms. Have periods of minor, but real, improvement, then lose it and trying to desperately figure out what of the endless possible variables or combinations of them caused improvement or getting worse—and still never knowing if it's just random. And etc.

    I am slightly afraid that this type of approach is our only way(s) out. Some people, legitimately sick for years, do seem to get well. I know a couple, and I don't think I'm alone in finding those stories or seeing them and chasing the same things that they think made them well. And it's always (largely, aside from basics like proper sleep, eating, support) seemingly an entirely different path for everyone.

    When anyone seems to have recovered to any significant degree, it's just fantastic. But I looked at the data sets and things—I'm not stupid, but I don't have the biochemistry/medial expertise that some here seem to have—I have no idea how I could DIY something like this. I would literally not be able to do anything else, which would be worth trying, except I have to feed myself, keep all the machineries going to just basically survive—those things wouldn't stop to give me space/time/energy.

    I don't mean that as bitching, it's just that it's overwhelming. The researchers are doing so much now, and it's great. But I also always kind of wish/wonder they'd look at people who've recovered significantly and see if there's anything there. Apply the same kind of big data approach to that. Some part of me feels like they might find some subgroup has either found the focus that Mario has or just stumbled on some sort of global set of circumstances, food, drugs and whatever else—and found themselves on the other side.

    But coming back to my initial thought—how on earth could this be done pragmatically, or for any kind of cost that people could afford. That is, very very custom medicine. That's talked about a lot now, custom medicine—and seems to be applied slightly in some illnesses more and more—but the model of finding THE drug or THE mechanism still predominates. And I wonder if that's largely because the custom medicine model is so impractical in our healthcare system.
     
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  8. mariovitali

    mariovitali Senior Member

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    @Janet Dafoe (Rose49)

    Thank you, i really hope that we can give this one good chance. So that others know i have a complete hypothesis available that i can disclose to the OMF and its researchers. I was a patient for about 9 years.

    In a nutshell : CFS is a kind of a Liver Disease (Correction : Hypothesis), there is no Immune system involved in the sense that others believe so. There is an immune response but the question is why this is so? When i "crashed" back in 1998 i first got Urticaria, Joints Pain, Red spots all over my hands and then i got a mixture of CFS and something called Post-Finasteride Syndrome. At first we thought it was an auto-immune disease.


    Please note that The Machine Learning methods i use have discovered Pyruvate Dehydrogenase one year ago before the Fluge Study (find also Liver DIsease discussed).


    http://forums.phoenixrising.me/inde...e-treatment-for-cfs.37244/page-65#post-679562

    In the same thread Choline (Phospholipid) and Bile Acid metabolism are also discussed one year before the Naviaux Study

    The algorithms do also agree on Mitochondrial involvement. All of these results are reproducible.

    Thank you again, i will PM you with my real name.


    CORRECTION : I am more than a year symptom free, it seems time passes by very quickly!
     
    Last edited: May 30, 2017
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  9. mariovitali

    mariovitali Senior Member

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    @Janet Dafoe (Rose49)


    Couldn't add this to the post above so here goes :

    algorun.png


    What we see here is several Machine Learning Algorithms telling us the important elements behind the Pathology of CFS. Note how Liver Disease, Mitochondria, TYRO3, GAS6, GRB2 come up as important topics.

    Note also ROS (=Reactive Oxygen Species) in one algorithm run.

    TYRO3, AXL, GAS6 are All Vitamin K Related! Do i suggest that Vitamin K supplementation fixes things? I am not and obviously things are more complicated than that.
     
  10. Alvin2

    Alvin2 If humans were rational...

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    I've tried it, no dice
     
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  11. Jesse2233

    Jesse2233 Senior Member

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    Hey @mariovitali did any specific autoantibodies repeatedly show up in your algorithm?
     
  12. mariovitali

    mariovitali Senior Member

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    @Alvin2

    Yes and there is a reason for that. It's a Jigsaw puzzle which is different for all of us but there are some similarities. Vitamin K related Genes is one of them (Hypothesis)



    @Jesse2233

    Yes, Cardiolipin ones. I can create a Video showing how the algorithm runs.There is no human intervention involved to this and results are fully reproducible.
     
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  13. mariovitali

    mariovitali Senior Member

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    @Jesse2233

    Here is a run i just did now. I simply ask from the software to output a larger number of important topics (in this case n=10) and cardiolipin is there :



    algo2.png
     
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  14. Alvin2

    Alvin2 If humans were rational...

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    I actually took the Vitamin K2 MK4 for a different reason but it had no discernible effect on my ME/CFS, which is why i was surprised to see sphingolipid abnormalities mentioned by Dr Naviaux's research. That said it may function to repair some of the brain damage once a treatment for the condition is developed
     
  15. mariovitali

    mariovitali Senior Member

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    @Alvin2

    Sorry where did Dr Naviaux Research discusses K2?
     
  16. Alvin2

    Alvin2 If humans were rational...

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    bah i was editing my post as you were reading it
    He mentioned abnormalities in sphingolipids and Vitamin K2 is required for their synthesis.
     
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  17. Jesse2233

    Jesse2233 Senior Member

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    Thanks Mario, any other autoantibodies pop up?
     
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  18. mariovitali

    mariovitali Senior Member

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    No but i could easily add any autoantibodies to the software and have their importances / relevancy to CFS be evaluated. This is a kind of Hypothesis-Generating system that -hopefully- creates informed hypotheses enabling Researchers to focus on the most probable candidate Genes and Pathways
     
    Last edited: May 30, 2017
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  19. mariovitali

    mariovitali Senior Member

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    @Jesse2233 @Alvin2 @Michael_venice


    Please read this post, looking forward to your comments.

    http://algogenomics.blogspot.com/2017/05/results-from-classification-analysis.html

    Take special note of a US Patent that uses Vitamin K for treating Mitochondrial Disease :

    https://www.google.ch/patents/US20140031432

    <SNIP>

    [0023]
    The ability to adjust biological production of energy has applications beyond the diseases described above.
    Various other disorders can result in suboptimal levels of energy biomarkers (sometimes also referred to as indicators of energetic function), such as ATP levels.
    Treatments for these disorders are also needed, in order to modulate one or more energy biomarkers to improve the health of the patient.
    In other applications, it can be desirable to modulate certain energy biomarkers away from their normal values in an individual that is not suffering from disease. For example, if an individual is undergoing an extremely strenuous undertaking, it can be desirable to raise the level of ATP in that individual.

    <SNIP>

    [0084]
    Several metabolic biomarkers have already been used to evaluate efficacy of CoQ10, and these metabolic biomarkers can be monitored as energy biomarkers for use in the methods of the current invention.

    Pyruvate, a product of the anaerobic metabolism of glucose, is removed by reduction to lactic acid in an anaerobic setting or by oxidative metabolism, which is dependent on a functional mitochondrial respiratory chain.

    Dysfunction of the respiratory chain may lead to inadequate removal of lactate and pyruvate from the circulation and elevated lactate/pyruvate ratios are observed in mitochondrial cytopathies (see Scriver C R, The metabolic and molecular bases of inherited disease, 7th ed., New York: McGraw-Hill, Health Professions Division, 1995; and Munnich et al., J. Inherit. Metab. Dis. 15(4):448-55 (1992)).



    Again, it is not suggested that Vitamin K supplementation will treat CFS. But Vitamin K Metabolism is one piece of the puzzle.
     
    Last edited: May 30, 2017
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  20. Themos Kalafatis

    Themos Kalafatis

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    @Janet Dafoe (Rose49)

    Could you ask Dr Davis if a Fibroscan is included among the list of tests performed to CFS/ME Patients? This test is a non-invasive way for checking Liver Fibrosis.

    I searched Phoenix Rising to find any comment mentioning someone ever performing a Fibroscan to check for Liver Fibrosis. There were no hits so i felt that i should ask this explicitly.


    @all

    Has anyone ever performed this test?
     
    Last edited: Jun 1, 2017
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