The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
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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. ebethc

    ebethc Senior Member

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    Saturated fat is hard for me to digest... high butter meals make me feel nauseated and kind of flu-ish
     
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  2. boolybooly

    boolybooly Senior Member

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    With dairy butter @ebethc you could be looking at a casein reaction.

    For some people it is like a gluten sensitivity.

    I dont eat any dairy milk products because it causes my other allergies to flare up, but its not the lipids. I can eat pure veg oil mayo all day (high quality mind you with minimal preservative etc) and no regrets.
     
  3. ebethc

    ebethc Senior Member

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    I can eat cheese in moderation, and butter even more moderately and be fine... A rich cheese is okay every once in a while, but heavy butter is never okay... I think it's the fat that's the bigger problem...The problem w dairy is the richness (ie, fat), and they're constipating.. High butter content is not constipating, but I can't tolerate it (ie french food)..
     
  4. alex3619

    alex3619 Senior Member

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    The literature typically discusses sudden or slow onset. Many of us relate to a concept of staged onset. After each insult we are worse and never regain the former level prior to that insult.

    Its typically a virus, but can also include an exercise program for me. Event by event I have slowly declined. Improvement is however very very slow, and probably more about effective management rather than improvement.
     
  5. alex3619

    alex3619 Senior Member

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    Butter is a source high in arachidonic acid, a proinflammatory hormone precursor. How do you react to organ meats? They are even higher. I use this as an excuse to not eat liver, my Kryptonite.
     
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  6. ebethc

    ebethc Senior Member

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    haha... no liver for me either! you can put all the onions and ketchup you want on it, I still know it's liver... every 5 years I eat either sweetbreads or pate, but that's it..

    Is cheese high in arachidonic acid? probably different for high fat (cambozola, my fave) vs lower fat (swiss, mozzarella, parmesan)

    I put cream in my coffee, use a small amount of butter in cooking (~few times a month), but love cheese.. I don't eat it in great quantities b/c it causes constipation (my kryptonite). I also love ice cream, too, but don't eat it b/c it's too rich and I can't exercise enough to burn it off..
     
  7. pibee

    pibee Senior Member

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    Just want to comment on this, because not insignificant part of pwME in fact feel better with alcohol, there is a thread about it on PR.
    I am one of them and alcohol makes all my symptoms better, especially when I am already sobering and the next day..
     
  8. alex3619

    alex3619 Senior Member

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    Alcohol can deplete you of arachidonic acid, which in some cases might be a good thing. Or its something else. We definitely do not have all the answers, especially for subgroups.
     
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  9. alex3619

    alex3619 Senior Member

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    I would have to investigate this to find out, it most definitely will depend on the type of cheese, but I think cheese, from memory, is generally lower in arachidonic acid.
     
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  10. pibee

    pibee Senior Member

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    Definitely no answers :D By the end of 2018, hopefully :D

    I'd bet on vasodilatation/vasoconstriction effect.

    I remember before knowing my condition is ME/CFS, when I was drinking and getting sobber-ish at 3-4am, but still under influence... i was thinking "damn, i should take driving test in this condition" :rofl:, my brain fog and other cognitive symptoms were always closest to normal.
     
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  11. jaybee00

    jaybee00 Senior Member

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    @Janet Dafoe (Rose49) @Ben H

    Hello,

    I understand that Dr. Phair et al. want to keep a lid on the metabolic trap until you have investigated further, but I wondered if it might be possible to query Dr. Phair as to what supplements/drugs might have the potential to worsen the trap...

    e.g. whey protein, amino acids, DCA, Q10, NAD+, B vitamins, Mifepristone, rapamycin, etc.

    Definitely not looking for an endorsement of any of these substances, but, if possible, a red flag indication that perhaps one or some of these have the potential to potentiate the trap....

    Thank you.
     
  12. Galewind

    Galewind

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    i didn't even know dairy butter has much casein in it i thought it was mostly just fat.
     
  13. Kenshin

    Kenshin Senior Member

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    I love butter but hate organ meats. I tend towards slightly higher fat and lower carbs just because it seems easier to digest. You might call my diet "Keto-curious".
     
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  14. boolybooly

    boolybooly Senior Member

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    Well I guess it is mostly, as I understand it trace amounts of casein are present in butter, much lower proportions than cheese.

    I am happy to admit I am not an expert, just thought it might be worth considering :) dairy is something I avoid personally because it sets off allergies, so it struck me as worth mentioning.

    Its interesting because casein breaks down to casomorphins which are opiods which can cause constipation (and also release histamine), more in cheese than butter but if one was sensitive then ...

    Personally I love organ meats, sorry animals, I say a little thankyou every meal and buy free range, but I find quality is variable and lamb especially can vary from good to not at all good for me, which I think might be to do with the things they use in dips to kill ticks and other parasites, but I cant prove it.
     
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  15. Galewind

    Galewind

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    Cheese im sensitive too gives me instant feeling of needing fiber. Ive heard cheese is addictive that may explain w hy cause it breaks down to opiods?
     
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  16. jake45

    jake45

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    what meats do you guys recommend staying away from?
     
  17. boolybooly

    boolybooly Senior Member

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    For me personally @jake45 I have a list but the same might not apply to anyone else. I am very intolerant of a lot of foods most people take for granted, like potatos and tomatos, high amine and high salicylate foods.

    I keep a food diary which helps me decide on the basis of what causes a reaction and work out the theory later but there is always the possibility I have misunderstood.

    Its hard to know what is good for others but I am normally safe on pork and beef cooked from fresh.

    Chicken gives me brain hype and salmon and other fish typically give me a day of headache at the moment but didnt used to, however my food diary suggests this may be due to often eating lentils the day before the fish and headache so I will have to stop red lentils and try again, lentils have a reputation for causing migraines for some people.

    Turkey I think depends a bit what it has been fed on. I react badly to soya and I suspect that there is soya in some turkey feed, sometimes turkey makes me feel the same way as eating soya, neuro-shakey and muscle wasting type muscular ache, but sometimes it does not. I think perhaps it is better if cooked for longer like a Christmas roast.

    I read chicken hype was due to amines and they are concentrated in the skin but even avoiding skin is not enough. Its dose dependant and cumulative so I can get away with small amounts with long intervals of a week or so between which is good because I can eat chicken livers sometimes which is nutritious.
     
  18. raghav

    raghav Senior Member

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    Can somebody tell me whether there were any patients in the severely ill group of 20 from whom blood samples were collected for BigData study, who had gastro intestinal symptoms or IBS ? I want to know whether IBS present patients will constitute a separate sub group ? @Ben H can you find out from Ron Davis or somebody else ? Because my fatigue sky rockets whenever I have bowel upsets. I want to know how that manifests in the data collected. Thanks in advance.
     
  19. Wishful

    Wishful Senior Member

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    @boolybooly , I too am very sensitive to potatoes and tomatoes. I assume it's the solanine and tomatine.

    I was sensitive to meats--or rather the fatty acids not accompanied by adequate carnitine--for a while, but I could eat it if I took supplemental carnitine. Beef has plenty of carnitine; chicken doesn't. After a while of supplementation, I lost that sensitivity. I didn't have the symptoms you mention, but the fatty acids increased my general ME symptoms. I don't really think you have the same problem, but you could try carnitine if you're in the mood for experimenting.
     
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  20. nanonug

    nanonug Senior Member

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    Welcome to the club! Whether it's causative or just correlated is something that I would like to know as well.
     
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