Despite Our Losses, People with ME/CFS Want More
We've been cheated by ME/CFS and we all know it. That's a no-brainer, if you'll pardon the cognitive pun. And loss didn't just result from the bad things that befell us. It also encompasses the good things that just ... never came. The absence of bounty. Of wholeness. Of peace.
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A Metabolic Trap for ME/CFS?

Discussion in 'Latest ME/CFS Research' started by Janet Dafoe (Rose49), Apr 4, 2018.

  1. mariovitali

    mariovitali Senior Member

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    @Ben H

    According to my Hypothesis (and experience) Whey Protein is very problematic. I also believe that you went "low fat" when you were working out , is that correct? If you did so, this is yet one more reason for "crashing".

    I am not aware of the elements comprising the "Metabolic Trap" hypothesis. Dr Phair (with whom we exchanged many emails) has never discussed any details of this Theory so i am also looking forward to hearing about it.

    Needless to say that a lot of Weight Lifters have Liver issues even with simple supplementation of Whey, Creatine and BCAAs.

    I believe that you will find the following study interesting. Why do we have increased Liver Enzymes after weightlifting? Is it due to actual strain on the Liver or something else is in play?

    The study clearly says about asymptomatic elevations. OTOH we may have an individual with a 90% desctructed liver but despite this no apparent symptoms (...)

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2291230/


    Unfortunately to this day we do not know :

    1) What is the prevalence of ME/CFS patients with previous Liver insults (Hepatitis, Gilbert's, Hemochromatosis, EBV, Lyme, Certain Medications) and/or Gallbladder (Stones, Gallbladder removal, Cholestasis) issues vs Controls
    2) How many ME/CFS patients have Liver Fibrosis vs Controls.


    2 days ago, yet one more patient from Switzerland was found to have F2 Liver Fibrosis.
     
    Last edited: Apr 21, 2018
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  2. Wishful

    Wishful Senior Member

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    I'm not at all surprised that weight lifting would cause changes in liver function. Tearing up all those muscle cells means a major clean-up effort. The bloodstream should be filled with extra toxins, protein fragments, etc, which the liver has to deal with. I'm sure it's complex, which is why there isn't a complete understanding of it yet, especially since there's isn't any obvious profit available from the information.
     
  3. Murph

    Murph :)

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    For anyone desperate for more info on this hypothesis, you may be able to glean something from this site

    https://www.researchgate.net/project/Etiology-of-Chronic-Fatigue-Syndrome

    (ht: @pibee for the link)

    Robert Phair has put up a bunch of questions, ponderings and theories there, including this picture, which is well above my paygrade but could perhaps yield insights for some of you!!

    MetaboliclatchhypothesisforCFS-Phair2016.png


    edit: you can trawl even more of Robert Phair's stuff at this link. Some things show up there that I didn't see in the CFS project, even though they seem to be linked.

    https://www.researchgate.net/profile/Robert_Phair2

    for example, this question,
    What is your experience treating pellagra with niacin?
    Textbooks say that pellagra is cured promptly by dietary niacin. But I have not been able to find reports written by physicians or public health officials describing the actual time required for regression of pellagra symptoms after vitamin treatment begins. I'm particularly interested to know if you have encountered any cases of niacin-resistant pellagra or cases where cure was not achieved despite good patient compliance with the therapeutic regimen.

    @mariovitali @paolo . Can you see a linkage here? Why might Phair be asking this?? (I see Pellagra can be treated with nicotinamide, and I recall that nicotinamide levels were way out of line in Naviaux's big metabolites study...)
     
    Last edited: Apr 30, 2018
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  4. mariovitali

    mariovitali Senior Member

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    @Murph

    First of all i do hope that whatever Dr Phair's Research brings is a success so that ME/CFS belongs to the past.

    I do not know many details about Dr Phair's Hypothesis but allow me to give my two cents :

    -Regarding Niacin : I do not know if it is suggested that a high dose Niacin can be tried. I would like however to disclose that i sent to Dr Phair and Prof. Davis the following (October 2017) :


    Screen Shot 2018-05-01 at 07.01.46.png


    In other words, the techniques i use identify NAD as a "central junction" of the problem. I also hypothesise that both Tocotrienol and Niacin/NADH Supplementation is contra-indicated.

    Now, i am not suggesting to ME/CFS patients out there to either take or not take Niacin/NADH. This information was addressed to Researchers, not patients.
     
    Last edited: Apr 30, 2018
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  5. pibee

    pibee Senior Member

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    Haha, i was obsessing on topic and stalking Phair on researchgate few weeks ago but then I just figured it's too complicated to figure it out (especially with my limited knowledge) and will just have to wait for the end of the summer.:nerd::cry:
     
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  6. Learner1

    Learner1 Administrator

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    @mariovitali Can you please explain your diagram further?

    My lab results consistently show huge oxidative stress with depletion of vitamins E, C, A, alpha lipoic acid and glutathione.

    Both NAD+ and NADH have given me more energy, while nicotinamide riboside does nothing, and niacin tends to reverse methylation, counteracting the good effects of methyl B12 and other methylation cofactors.

    It is unclear to me how your network diagram is relating to actual biochemistry. Can you explain more here, please?
     
  7. mariovitali

    mariovitali Senior Member

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    @Learner1

    I will post in the relevant thread so we do not derail this one . I will tag you there
     
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  8. Learner1

    Learner1 Administrator

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    Ok, thanks!
     
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  9. mariovitali

    mariovitali Senior Member

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    @Learner1

    Just to clarify regarding Niacin : I am not suggesting that one should take or not. What is known however is that to people having Liver Disease, Niacin can cause problems. One might say that since Liver Enzymes are normal, this means that the Liver is fine. This is not true unfortunately. The only way to assess Liver function is through Liver Biopsy. I have a few examples of ME/CFS Patients with F2 - F3 Fibrosis being completely asymptomatic and without having elevated Liver Enzymes.
     
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  10. Learner1

    Learner1 Administrator

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    There is a lot going on in the liver, like Phase I and Phase II detoxification. The various enzymes and pathways use many vitamins, minerals, and amino acids. Picking on niacin seems a bit silly.

    One needs sufficient cofactors in good ratios to make these pathways work, as well as the ability to eliminate the toxins they mobilize and process from the body.
     
  11. mariovitali

    mariovitali Senior Member

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    I agree with everything apart from the "silly" part. Please see here regarding Niacin :


    https://livertox.nlm.nih.gov/Niacin.htm

    Mayo Clinic :

    https://www.mayoclinic.org/drugs-supplements-niacin/art-20364984
     
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  12. Learner1

    Learner1 Administrator

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  13. Learner1

    Learner1 Administrator

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    Taking large doses of anything in isolation is a bad idea. Too much water can kill you.

    One needs the cofactors that work with a given nutrient.

    Niacin reverses methylation, which can increase toxic problems and cause liver damage. And many ME/CFS patients are short of numerous Phase I and II nutrients.

    All of this points to getting good lab work done and working with a practitioner that knows what they're doing rather than taking large amounts of some supplement one reads about on the internet. Not avoiding niacin.
     
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  14. raghav

    raghav Senior Member

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    Well it is nearly 15 days since the last post in this thread, which i consider the most important in the forum at least for the next few months perspective. Can @Janet Dafoe (Rose49) or somebody give us an update on how much of the testing has been completed, in terms of total effort estimated and whether there were any hiccups along the way. I am not compelling but just want to know whether we have really reached the end of the tunnel. Thanks in advance.
     
  15. maybe some day

    maybe some day Senior Member

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    Im sure when that happens we will all know.
     
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  16. Sushi

    Sushi Moderation Resource Albuquerque

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    I agree. There will be updates when more is known but, as I remember, we were told that that might be the end of the summer.
     
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  17. maybe some day

    maybe some day Senior Member

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    I dont ever recall wishing summer to end, until now.
     
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  18. valentinelynx

    valentinelynx Senior Member

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    LOL! You obviously don't live in Arizona! (I see you live in the SF Bay Area, which was my home most of my life. Wish I could get back there!)
     
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  19. Kenshin

    Kenshin Senior Member

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    I would need air con 24/7, I love the sun, but constant heat makes me feel...Do I even need to use an adjective at this point? I think we are all familiar with the peculier form of torure known as M.E/Cfs. :bang-head:
     
  20. wastwater

    wastwater Senior Member

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    I think FOXO1A pathway maybe important and possibly the drug Rosiglitazone worth looking at
     

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