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.
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Confused over metabolic dysfunction research vs ketosis

Discussion in 'General ME/CFS Discussion' started by Ravn, Jul 17, 2017.

  1. Ravn

    Ravn

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    Some of the recent research suggests that ME patients cannot use glucose properly and may therefore use other metabolic pathways to compensate (and I understand some ME folks have concluded low-carb is the way to go).

    But things can't be as simple as that? Or a ketogenic diet would be our cure and there doesn't seem to be anybody claiming that, even if some people do say they feel somewhat better on low-carb or keto diet.

    So is the ketogenic metabolism also damaged, as well as the glucose one?

    And is there then a third, highly inefficient, metabolic pathway that kicks in when neither carbs nor fat can be used properly (I understand protein gets converted to glucose in the body)?
     
    belize44 likes this.
  2. AdAstraPerAspera

    AdAstraPerAspera

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    Hi Ravn!
    How my doctor explained this to me (and I'm currently just a pleb with brain fog so please forgive me if I'm wrong) was that our metabolic pathways are ALL damaged, where the chain of breaking down food into energy doesn't function properly. However, breaking down carbohydrates is the least functional one (most broken, and also usually the most efficient in healthy people), then, you have the slightly more functional process of turning fats into energy, and finally you have the process of turning protein into energy. This process is the most functional one we have, even though it's the least efficient in healthy people. This is why many people find that shifting to a high protein and fat and low carbohydrate diet is beneficial to their health and energy levels, as less food is being wasted and you are making the most of a broken energy system.

    Why is this not a cure?

    Because the system is still broken.

    And making the most of our ability to digest protein is not where our energy issues stop. Something I personally believe contributes to ME/CFS greatly is mitochondrial failure, where our cells don't actually use the energy we have in an efficient way. So even if we fixed our digestive pathways, we still wouldn't be able to use the energy we got from food! There's some really useful info here: http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

    Taking things like D-Ribose and amino acids can really help to aid with mitochondrial failure.

    That's how I understand it anyway, I hope it helps!! :)
     
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  3. A.B.

    A.B. Senior Member

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    The picture of metabolic dysfunction in ME/CFS is still blurry. It does seem clear that there is hypometabolism and alterations in energy metabolism, but every study has reported slightly different metabolic profiles. There may be subgroups that can only be clearly delineated with larger and more studies. The technology used is susceptible to false positives.

    Metabolism is likely to be an important aspect of ME/CFS but we can't make treatment decisions yet.

    If you feel that a specific diet works well for you then listen to your body and stick with it.
     
    AndyPR, Aroa, Manganus and 8 others like this.
  4. arewenearlythereyet

    arewenearlythereyet Senior Member

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    I think there are also feedback and controls that manage what we metabolise based on what we eat and digest as well as what we metabolise for energy/ store / excrete.

    Generally (very generally) as I understand it the body prefers to digest all 3 food types for various metabolites (not just directly for energy). There is also storage of energy and metabolites and their later use to consider. The starvation priority: glucose first, then fat reserves and then protein may also be at play. We also can change the amount of metabolites we excrete vs what we store based on various feedback loops.

    I think it's more complicated than just changing what we eat. It also involves the regulation of reserves and the use of other metabolites from food that might also be fighting against unusual and conflicting feedback? This may result in a cascade of associated deficiencies.
     
  5. belize44

    belize44 Senior Member

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    I am not familiar with a lot that is mentioned here, but I strongly agree that there is an issue with mitochondrial malfunction. I have been on a modified Keto diet for about 7 weeks, and although I have lost 13 pounds, I feel just as tired, if not worse than before. I also find that I perk up a bit if I allow myself sprouted grain bread, or fruit now and then; it is as if I need a bit of glucose at times. But just knowing that I am no longer eating things that might have caused trouble in the past gives me hope now. I don't drink fruit juices, nor do I consume fruits high in sugar such as grapes, or oranges. And I eat small amounts of blueberries, strawberries or raspberries.

    I have noticed that when I eat any kind of grains, no matter how small, or dairy, I get increased muscle pain so there is that to consider as well.
     
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  6. pattismith

    pattismith Senior Member

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    I wonder if I have read here on the forum that men can get energy from blood amino acids easier than women?
     
    Jill likes this.
  7. Jill

    Jill Senior Member

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    There was the man women difference in the Naviux study. Would that imply diff responses to keto diet.

    Keto has helped me immensely. I need to have been doing it longer to confirm that totally though. I have hit the euphoria they talk about. Feels like brain has been switched on. Don't suffer PEM either which is extraordinary. I have to keep top of the sodium and potassium issues. You also need to take magnesium. I have POTS and I'm thinking it might be addressing that. In a month or so's time I'll introduce a few extra carbs and see effects.
    Sleep is disrupted now but thats common too but had that before kept. Am also in a lot less pain. Am interested in others responses. Prob relevant for a subgroup. One dr had a graph showing all the parameters that decreased and one was leptin., which I thought interesting given Youngers findings
     
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