International ME/CFS and FM Awareness Day Is On May 12, 2018
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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. Wishful

    Wishful Senior Member

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    One observation that might be useful in understanding the feedback loop is the temporary remissions in the early stages of the disease. The feedback might be limited at first, or the tripping point just slightly above/below normal, allowing random fluctuations to occasionally kick us out of the abnormal state. Then gradually it becomes worse, requiring a much stronger correcting signal to break it out of the abnormal state.
     
  2. perrier

    perrier Senior Member

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    Yes, Wishful, this is the pattern I am seeing; initially, remissions (though not 100%), and with time less of these and more of flatlining.

    I hope they figure this out fast.
     
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  3. alex3619

    alex3619 Senior Member

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    I
    I think the encephalitis subset and the EDS subsets are high on the list of candidates for blood brain barrier issues. However I suspect this is more to do with the trigger than the ongoing problem, but it could not help to have a vulnerable brain in any case.
     
  4. Wishful

    Wishful Senior Member

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    In situations like this, where there might be difficulty in deciding which of many options to research, a gambling pool can be quite good at 'choosing a winner'. We of course can't actually place monetary bets here, but the results might be interesting. I'm going to bet that peroxynitrite deficiency (in the affected brain cells) is part of the positive feedback loop.
     
  5. Wishful

    Wishful Senior Member

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    @perrier, in addition to what seemed to be spontaneous temporary remissions, there were a few drugs and supplements that also triggered similar temporary remissions. They worked a couple of times, then never worked after that, even at higher dosages. Too bad I can't 'try them for the first time' again to see if they would be as effective now, or if they were only that effective at that point in the development of my ME/CFS.
     
  6. kurt

    kurt Senior Member

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    That's interesting Jim... I've been studying autoimmunity the past few days, since the Scheibenbogen study, and that clockwork PEM pattern, what you describe, matches the timing of a type IV hypersensitivity, a consistently delayed immune system response. So in theory, this makes me wonder if PEM is a strange autoimmune response, rather than delayed recovery from ATP depletion as we have been told for years. Maybe a bit of both, but still, interesting that you said 48 hour delay. And after coq10, it improves, and coq10 works on the immune system. That all fits. But makes me wonder how the coq10 helped. Since coq10 boosts immune function, maybe it boosted the T-cells and they got rid of the autoantibodies? They do have that function naturally. But I can't find any studies on T-cells and coq10, so that is just a wild theory....

    I get that two day PEM delay sometimes too, but often forget about the exertion due to memory and brain fog issues.

    This happened to me also, twice. I thought I was recovered, each time the improvement lasted for about one year. But it was only remission, and the ME/CFS returned worse than
    before each time, and I tried both treatments again and neither worked.
     
    Last edited: Apr 6, 2018
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  7. perrier

    perrier Senior Member

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    Identical pattern on this end
     
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  8. alex3619

    alex3619 Senior Member

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    The most extreme improvement I ever had was only once, on a high dose of the grape version of pycnogenol, the original product made in France to the original formula. My body fizzed, starting in my stomach, its like someone had installed a soda fountain there. Then it moved out to my limbs, like someone was mainlining softdrink/soda into my veins. It was most unpleasant. When it finished, about half an hour to an hour after ingesting, I felt very very good for the first time in forever. This is of course a very powerful antioxidant. Most of the substances people have found to help have been antioxidants or B vitamins.
     
    Last edited: Apr 7, 2018
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  9. Mel9

    Mel9 Senior Member

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    That is really interesting. I get Type 4 hypersensitivity reactions to bandades and to PEG and other glycols. The delay is usually 24 hours. And my PEM delay period is about the same. A connection I have never madeuntil your post.
     
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  10. Ben H

    Ben H OMF Correspondent

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    Hi guys,

    I have just spoke to Robert Phair (what a wonderful guy), and he now has enough 23andme data and does not require anymore-thank you to everyone who sent some in.

    However if anyone has WES (whole exome sequencing) or WGS (whole genome sequencing) he is still interested in having that data.

    Thanks,


    B
     
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  11. Murph

    Murph :)

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    You were a weightlifter Ben, is that right? I bet you are interested in his hypothesis! Were you on any aminos or similar before you got sick?
     
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  12. Ben H

    Ben H OMF Correspondent

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    That’s right @Murph . Absolutely live and breathed it (the ‘lifestyle’) was my ‘job’ and had plans to naturally compete..then became ill.

    Yes I was on a few supplements. I was a natural bodybuilder, so no steroids etc, but supplements such as Whey protein, L carnitine, ZMA, possibly the occasional pre workout NOS drink. The usual stuff really. I wasn’t on BCAA’s separately bar those in the whey. Some people took them aswell as whey.

    I would have had a very high (200g at least) protein intake for obvious reasons, and I also dieted heavily ketogenically (mainly) to get to around 6-7% bodyfat.

    I am very, very interested in the hypothesis. Robert Phair is a really clever guy, also really lovely too.


    B
     
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  13. bertiedog

    bertiedog Senior Member

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    This was my experience too. That phase went on for about 2 years with me until it went into full blown ME/CFS.

    Pam
     
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  14. wigglethemouse

    wigglethemouse Senior Member

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    @Ben H From your chat do you know if Robert is interested in supplements body builders take or the reduced body fat %.
     
  15. ljimbo423

    ljimbo423 Senior Member

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    Hi Kurt- It looks like type 4 hypersensitivity is not an antibody response but rather a cell mediated immune response. So auto-anti-bodies don't cause type 4 hypersensitivity.

    https://en.wikipedia.org/wiki/Type_IV_hypersensitivity

    Me too! Two days is a looong time to remember something with brain fog and fatigue.:)

    My own personal view of what causes PEM is explained extremely well in this study.


    I don't think it's just coincidence that there was increased levels of bacterial DNA- (lipopolysacharides etc.) maintained at 72 hours post exercise in the CFS group versus the control group.

    I believe it's the lipopolysacharides from bacteria in the gut, getting into the bloodstream, causing an immune system reaction, impairing mitochondria and causing PEM.

    Many people with CFS experience their worst PEM symptoms anywhere from 24 to 72 hours after exercise, which matches the increase of bacterial DNA found in the blood.......


    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4684203/#sec011title
     
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  16. ljimbo423

    ljimbo423 Senior Member

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    Here is another quote that explains what could be described as part of a metabolic trap....

    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5480219/

    Mitochondrial dysfunction in CFS, I think is becoming clearer and clearer. Mitochondrial dysfunction, as this review states, creates inflammation and inflammation, causes mitochondrial dysfunction.

    Causing to some degree, a locked system of ongoing, chronic, low grade inflammation and mitochondrial dysfunction. I think this is probably a part of what makes CFS a chronic condition.

    However, I don't think mitochondrial dysfunction is the core cause of CFS. For me, I believe it's increased intestinal permeability that is causing low grade inflammation and mitochondrial dysfunction.

    The mitochondrial dysfunction is causing more inflammation and in turn, causing more mitochondrial dysfunction and fatigue.

    Jim
     
  17. Ben H

    Ben H OMF Correspondent

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    Hey @wigglethemouse

    The supplements I believe. I just added about my bodyfat and ketogenesis in my post as I believe the latter may have been implicated for me (a ton of things happen while in and transitioning to keto). But thats just me going on about it, not Rob.


    B
     
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  18. Rossy191276

    Rossy191276 Senior Member

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    Hi all...

    I think this hypothesis is the one that matches my experience the best and gives me great hope.

    I am 41, I was a professional tennis player then always super fit post career running a marathon in 2013, working out and still on the tennis court a lot for work.

    In late 2015 I had a friend tell me about the kero diet and I went on what I would say was a strict paleo diet... about 2 weeks in I started having effects like weakness, dizziness for about a weak until collapsing after about a week.

    Interesting things were that I thought I had what was a complete recovery after about 2 months... during this time I developed an incredible appetite the size of which is hard to describe. I still have a list of one day that I kept because I couldn’t believe how much I had to eat even though at this point I was housebound. It was something like 2-3 times the amount I was eating when healthy and exercising a lot.

    As I said I became symptom free after about 2 months and over another 6 weeks I started building up exercise to point where I believed I had fully recovered. At this point one weekend I ran 6miles, played tennis, and swam 45 mins. On the Monday morning I was doing a tennis session with a client and within 2 mins I felt the ‘metabolic switch’ happen again and I got symptoms back at about 20% of original collapse. A week later I went for a surf and suffered full crash again.

    Since then with each crash I have achieved partial remissions that have been smaller and smaller and a year ago I became completely bed bound, and have spent most of the last year too weak to speak.

    The idea of this being some sort of metabolic trap that clenches harder with each crash certainly makes a lot of a sense for me. I know some people seem to have different experiences and symptoms but I have always felt that my illness was some sort of catastrophic failure of energy production that was somehow initially triggered by going on that diet while exercising a lot.
     
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  19. Murph

    Murph :)

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    Interesting. I also got sick while I was doing more exercise than ever before. (running 10km several times a week, on top of playing hockey (games and training)). But my diet was probably very low in protein. I was a vegetarian, and pretty lax at nutrition. I mostly just ate carbs.
     
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  20. TreePerson

    TreePerson Senior Member

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    It’s all very interesting and very puzzling. Some people feel that the ketogenic diet might have triggered their ME while others are using it specifically because they believe it aids recovery. By bypassing a blocked energy pathway? And then there is Dr Naviaux who saw a metabolic similarities with ME and starvation.

    I wasn’t dieting but I was very physically active and experiencing acute sustained stress for several years previously. And then I caught a virus. And followed the same pattern of deterioration described by others. Falling further down the well. It took about 18 months to find myself right at the bottom.
     

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