Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
Discuss the article on the Forums.

Davis speech from Millions Missing. Some new info on metabolic trap hypothesis

Discussion in 'General ME/CFS News' started by Murph, May 13, 2018.

  1. Murph

    Murph :)

    Messages:
    944
    Likes:
    4,499
    I didn't transcribe this. The entire thing has been pinched from Reddit. Credit for it is due to a user there called u/wackycrazybonkers
    --


    You can see the whole event here: https://www.facebook.com/OpenMedicineFoundation/videos/1463510460420037/?t=2449. Ron starts speaking at the 42 minute mark.

    I think the wholly new parts here are:
    1. There are several possible metabolic traps to test;
    2. Patients may not have stumbled on this because you'd get worse before you got better.
    3. What your food gets converted to is important (linking here with @ChrisArmstrong research presented ta last year's omf symposium?)
     
    Last edited by a moderator: May 14, 2018
    Dan_USAAZ, J.G, TG95 and 42 others like this.
  2. hixxy

    hixxy Senior Member

    Messages:
    1,177
    Likes:
    1,372
    Australia
    Seems like it's an idea so vague and unfleshed out that you can't even call it a theory.
     
    Hip, alkt, Pink and 2 others like this.
  3. Murph

    Murph :)

    Messages:
    944
    Likes:
    4,499
    He's chasing four candidate biomarkers that distinguish patients from healthy controls. Point being that the doctor won't be able to say 'Go home, there's nothing wrong with you'.

    He isn't sure we need (or can obtain) a diagnostic test that isolates me/cfs in a single test. He wants to prove *something* is wrong, and later test for MS etc to see if its those things. "Almost all those other diseases have their own diagnostic tests, " he says.
     
    Last edited: May 13, 2018
    L'engle, Joh, alkt and 5 others like this.
  4. Murph

    Murph :)

    Messages:
    944
    Likes:
    4,499
    I'm inclined to believe them when they say the hypothesis is detailed and they are keeping those details secret to prevent people like me from jumping the gun and attempting something risky before they've tested it!
     
    Last edited: May 13, 2018
  5. ljimbo423

    ljimbo423 Senior Member

    Messages:
    1,135
    Likes:
    2,182
    United States, New Hampshire
    Thanks for the post Murph. It sure has gotten my attention!

    This makes me think he is talking about people trying supplement protocols and that might be what he is talking about when he says "treatment".

    Jim
     
    serg1942, ebethc, alkt and 4 others like this.
  6. Murph

    Murph :)

    Messages:
    944
    Likes:
    4,499
    This bit of the speech sounds like a bluff but hey, if it cranks up the pressure to get more funding, I'm all for it:

    Davis: "I think it's possible that's what's wrong in ME/CFS actually triggers autoimmunity, and could be the basis of all autoimmunity. And I've told that to Francis Collins [head of the NIH] and said you'll be really embarrassed if we discover that this is the basis of all autoimmunity and you guys have totally missed the boat by not funding this disease. Because this may be the pathway."
     
  7. pibee

    pibee Senior Member

    Messages:
    233
    Likes:
    343
    Can this story get more strange..... :nervous:

    ME the Creator?
    This could definitely get us some religious votes/donations.
    :cautious::D

    Creator's disease.

    The OA. (Original Autoimmunity)

    The OI = Original Illness.

    Many potential names that I like :D
     
    Last edited: May 14, 2018
    Raven Mom, Kenshin, Mary and 7 others like this.
  8. Research 1st

    Research 1st Severe ME, POTS & MCAS.

    Messages:
    709
    Likes:
    2,358
    My interpretation of what Ron isn't saying here but has said in the past is they are finding that ME CFS patients perpetually activate the defective Metabolic Mechanism (for ME CFS to occur in the first place) over and over again, probably with every new infection or stressor that flips that switch into the danger zone (e.g. the common cold, lack of sleep, allergies, stress, exercise, inflammation, ATP depletion via activity - sound familiar?!).

    If so, then the defective Metabolic Mechanism of ME CFS, is the core reason we remain ill and don't recover (hence we serially 'relapse' with exertion as we activate the 'defect' - hence CBT/GET destroys us) Vs other more classical autoimmune diseases where you also experience the consequence of the defective Metabolic Mechanism at onset, but then advance past this so it becomes historical, not current. With all other Autoimmune diseases, you aren't then stuck in the defective Metabolic Mechanism itself that's broken and held in stasis in ME CFS patients - yet both involve contact with it - hence Ron's suggestion one disease might explain all the others occurring is sensible and not an exaggeration at all, it's common sense theory.

    So to me, I feel Ron's team will eventually find the cause of the defective Metabolic Mechanism, E,g. why this occurs in ME CFS following a 'virus that never left me' (common complaint of 'Chronic Lyme' patients BTW) and thus potentially it really would apply to all autoimmune illnesses if correct because...

    If we know there is a major event, lets called it Event X (The activator of the defective Metabolic Mechanism - E.g. a common community acquired Pathogen) then all Autoimmune diseases can also potentially be shown to require contact with Event X, meaning by default, all ME CFS patients are held back by Event X perpetually because now we know this feeds the defective Metabolic Mechanism defect - hence the Mitochodrial energy in ME CFS shuts down to protect the patient and keep them alive (as Paul Cheney has claimed for decades - hence the abnormal 2 day VO2 max exercise test now makes sense), Vs other Autoimmune diseases where Event X took place as well (E.g. EBV triggering MS), but went onto state 1a, 2b, 3c which we have as established autoimmune disease states.

    Thus ME CFS isn't really a true Autoimmune disease like the others, it's the creator of one, like Ground Zero.
     
    lenora, ebethc, SueJohnPat and 9 others like this.
  9. mariovitali

    mariovitali Senior Member

    Messages:
    1,051
    Likes:
    1,042
    I went through the speech by Ron and the most important points are IMO the following :


    "What your food gets converted to is important" : This i do not understand are there any pointers as to what Ron refers to ? It does sound interesting but i would like to know more regarding the context (e,g Glycolysis? Bile Acids? Fat Absorption?)

    Then we have :

    1) Multiple pathways involved
    2) ME/CFS may hold the secrets of all autoimmune disease.

    I agree in both of the above. However, I also have to point out that a number of questions that are very easy to test (ie what is the prevalence of Hemochromatosis / Wilson's Disease / Cholecystectomies and many more "Liver stressors" to ME/CFS Patients) have not been answered yet.

    If a high prevalence of these "Liver Stressors" + ME/CFS does hold and also their relevance to ME/CFS Symptoms , then the "Metabolic Trap" Hypothesis sounds overly simplistic at least for a subset of ME/CFS Patients.
     
    alkt and Murph like this.
  10. Gingergrrl

    Gingergrrl Senior Member

    Messages:
    11,918
    Likes:
    34,957
    USA
    I find this fascinating @Murph and I have no idea if he is "bluffing" like you said or if he is on the verge of solving the whole of autoimmunity (or somewhere in between)! Either way, it is intriguing to follow (and hopefully gets more funding).

    This is really interesting to me, too, b/c I fit this definition of having a major event (actually a series of three of them) which started off as a post-viral illness but morphed into massive autoimmunity.
     
    lenora, alkt, MEMum and 4 others like this.
  11. alex3619

    alex3619 Senior Member

    Messages:
    13,040
    Likes:
    37,009
    Logan, Queensland, Australia
    So many of us are so used to testing things on ourselves that its almost automatic that many will. So if the treatment has serious risks its very prudent to keep it quiet until more details are figured out.

    I am much less prone to testing on myself these days, but a decade and more ago I would test everything that looked even slightly promising.
     
  12. alex3619

    alex3619 Senior Member

    Messages:
    13,040
    Likes:
    37,009
    Logan, Queensland, Australia
    I think this was just general background into metabolism. I think they are finding like 200 metabolic issues. Its not going to be summed up and simple at the same time as accurate and complete. So its a background statement, to set the stage.
     
    alkt, MEMum, TreePerson and 3 others like this.
  13. Murph

    Murph :)

    Messages:
    944
    Likes:
    4,499
    It reminds me of the Australian research that suggests something goes wrong that affects the way nutrients are processed, leaving us in a state of depressed energy.

    You can see it depicted in slides 7 to 11 of this talk by Chris Armstrong

    https://www.melbournebioanalytics.org/me-metabolism-and-i-by-chris-armstrong-august-2017/

    And you can see the relevant part of the speech here

     
  14. mariovitali

    mariovitali Senior Member

    Messages:
    1,051
    Likes:
    1,042
    Thank you @Murph

    I believe that the interesting bit starts at the 46:00 minutes mark. I've never looked at the work of Chris Armstrong which sounds very interesting.

    If i understand well, AMPK may be the switch that Ron talks about (?). However it is more interesting to focus on why as Chris Armstrong puts it "less and less nutrients are being absorbed". This is where a key piece of the puzzle probably exists, it is this trap that needs to be found.
     
    adambeyoncelowe, alkt and TreePerson like this.
  15. unicorn7

    unicorn7 Senior Member

    Messages:
    135
    Likes:
    563
    There actually already is a pathway known for this.
    There is a lot of evidence that ME/CFS patients have leaky guts. The bowel is permeable for certain bacterial parts (LPS). Patients have high LPS in blood and high CD14 (receptor for LPS).

    I also know that leaky gut is a condition that precedes auto-immune diseases. I've read some research where they had mouse models for diabetes type 1, where all the mouses developed a leaky gut a few months before they developed diabetes type 1.
     
  16. Pink

    Pink Senior Member

    Messages:
    572
    Likes:
    1,011
    Tri state area
    But not everyone has a major x event that triggered their cfs/me.
    This all sounds too vague & hypothetical right now for me to get excited by it.
     
    adambeyoncelowe, hixxy and alkt like this.
  17. ljimbo423

    ljimbo423 Senior Member

    Messages:
    1,135
    Likes:
    2,182
    United States, New Hampshire
    Morris and Maes found a very similar "metabolic trap" in ME/CFS-

    EDIT- "O&NS" means "oxidative and nitrosative stress".

    LINK

    Jim
     
    Last edited: May 14, 2018
  18. Aroa

    Aroa

    Messages:
    98
    Likes:
    509
    Spain
    Last Year I was very excited when I heard Dr. Davis during the Q&A update in March saying :

    "" It’s possible that we can find something that will work, at high concentration – but not be the target that the drug was originally developed for. Now, at these high concentrations there will be side effects – but as Dr Naviaux explains, it’s possible that all we need to do is to trigger the body to go back to normal – and so these side effects may not be so bad. This is not a drug that you’ll probably have to take year after year; it may be that a single dose will cure you. ""


    Over the last months I listened to Dr Ian Lipkin, Dr. Jarred Younger, Dr. Alain Moreau, Dr Zaher Nahle and Dr. Walter Koroshetz, saying that ME/CFS could have different subtypes (or even diseases) and that most likely would need different treatments for each one.


    Now I prefer to take things easy, be cautious about any statement and wait till we have some scientific evidence.
     
  19. mariovitali

    mariovitali Senior Member

    Messages:
    1,051
    Likes:
    1,042
    @ljimbo423

    CC : @JaimeS


    Thanks for this link, very very interesting! Here is my version of the Hypothesis sent to Stanford Researchers in 2015 (Ron Davis was not a recipient). Notice the mentions that several pathways are involved and that a vicious cycle takes place.

    MECFS-Email2 2.png
     
  20. ljimbo423

    ljimbo423 Senior Member

    Messages:
    1,135
    Likes:
    2,182
    United States, New Hampshire
    I think there are several or many biochemical feed-forward loops or vicious cycles that help sustain ME/CFS. I think that is probably why it's so hard to treat.

    For instance, I found that high dose coq10 stopped 95% of the flu like flares I use to get. It seems that somehow, coq10, by improving mitochondrial function, stopped the immune system reaction I was getting, that was causing the flares!

    So I think that mitochondrial dysfunction, causing immune system up-regulation, which causes more mitochondrial dysfunction, from the oxidative stress immune system up-regulation causes, is one of many feed-forward loops.

    So mitochondrial dysfunction= immune system up-regulation=mitochodrial dysfunction=immune system up-regulation, etc. One of many feed forward loops I think.

    Research says that mitochondrial dysfunction can cause immune system up-regulation and an inflammation "circle".

    LINK

    Jim
     

See more popular forum discussions.

Share This Page