The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
Discuss the article on the Forums.

Metabolic profiling reveals anomalous energy metabolism and oxidative stress pathways

Discussion in 'Latest ME/CFS Research' started by JaimeS, Jun 2, 2015.

  1. ChrisArmstrong

    ChrisArmstrong

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    Well I guess we all wish we knew, will be testing some things in this area though
     
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  2. bertiedog

    bertiedog Senior Member

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    Just a thought have you had Bartonella otherwise known as cats scratch disease ruled out?

    Pam
     
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  3. ChrisArmstrong

    ChrisArmstrong

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    Yes I think the Sympathetic nervous system is a good place to look into.
     
    Last edited: Jun 7, 2016
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  4. duncan

    duncan Senior Member

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    @bertiedog , the same thought leaped into my head when I read the post by @Hutan . Bartonella would be on my differential diagnosis list.
     
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  5. ChrisArmstrong

    ChrisArmstrong

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    Yeah I think many believe POTS is due to a lack of collagen as well. It's a main structural element of animal cells. POTS is common in all collagen-based illnesses.
     
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  6. ChrisArmstrong

    ChrisArmstrong

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    To allay the confusion, this cohort had hypermobility issues and POTS issues. This is important to the thought process because collagen is a main structural component of all cells that give them rigidity. Collagen being made up of all non-essential amino acids is likely the first major protein to be degraded as the body would rather use amino acids it can recreate on its own.

    I'm not saying this is the illness but I think it's a susceptibility factor. Plus there are many areas of the body where amino acids might be taken. The place they are taken is likely different from person to person. This is if the hypothesis is correct.
     
  7. Bob

    Bob

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    Jaime, it sounds like you're some kind of sugar vampire! (Edit: not meaning to make light of your situation.)
     
    Last edited: Jun 7, 2016
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  8. Bob

    Bob

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    I've thought about the collagen issue before and wondered if it might be associated with weak membranes, such as the gut barrier, blood vessels, and blood/brain barrier, which might make us vulnerable to unusual stress in various parts of the body?
     
  9. Hutan

    Hutan Senior Member

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    Just for your info @ChrisArmstrong and @JaimeS

    http://www.thejournal.ie/readme/me-invisible-illness-2792636-Jun2016/
    quoted on this thread
    http://forums.phoenixrising.me/inde...he-last-diseases-we-know-nothing-about.45061/

     
  10. bertiedog

    bertiedog Senior Member

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    I have hypermobility and I also have POTS. Also I have very stretchy skin which I think has aged me. I would love to know if there was anything I could do to improve the situation although I am doing very well energy-wise having given up gluten and lactose. The past few days I have had to lower my dose of thyroid and adrenal meds because it feels like I have too much energy and my brain is a bit too hyper.

    With regard to blood sugar I have had problems in the past with keeping it up to a reasonable level, I was permanently in a hypoglycaemic state but taking 6mg Prednisolone has sorted that out. It used to wake me up every night around 3 am and often it would be a panic attack. I was treated with thyroid and adrenal meds because my doctor thought I had a mild Sheehan's Syndrome which is basically hypopituitarism but I am not completely sure about that because one time I had to come off my thyroid meds after a load of stress I couldn't tolerate them. My TSH went up from 0.5 to 5.7 whereas if it was a pituitary problem I had that shouldn't have happened.

    Still I am very sensitive to where my blood sugar is and have often felt terrible with a perfectly normal blood sugar so for me I think I have had blood sugar issues long before I developed ME/CFS. A low carb diet with plenty of nuts, vegetables, small amounts of cheese, meat and fish suits me well and I have been able to stay slim and being able to walk every day by eating in this way (provided I haven't any virus or infection going on when everything changes and my energy plummets.

    Pam
     
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  11. JaimeS

    JaimeS Senior Member

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    Whey protein made me feel *so good*.

    Unfortunately it also made it hard to breathe. That was before I realized I was intolerant to milk protein... not lactose-intolerant, which is what I had suspected.

    I keep thinking I'm going to try a plant-based amino-acid blend. The higher-quality powders were pricey, though, last I looked.

    To comment, you may have to make an account. At the top, right-hand bit of the screen you should see something that says 'log in' or something equivalent. Then you can comment easily. I'm not sure we allow anonymous ones? Not in that position myself, as I of course have had an account from day 1! ;)

    ohhhh you mean on my blog here on PR! Oops... since you mentioned Ron, I thought you were talking about commenting on #MEAction. You should be able to scroll to the end of the article and there should be a comment box...


    -J
     
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  12. JaimeS

    JaimeS Senior Member

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    LOL! The thing is, I don't process sugar or carbs at all well, normally. Not long after that, I stopped eating them almost entirely. Get all my calories from lean protein and coconut oils. Seriously. Fish, chicken, very lean beef, and lots of coconut oil in everything.

    Not ready to try epileptic diet -- carbs are still 55-90-g a day, I'd say, even when one is actively avoiding them. I shudder to think what you'd really have to do to get low enough to avoid them enough to go into a primarily ketotic state.
     
  13. Mark

    Mark Former CEO

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    Re: hypermobility and ME, watch out for my review of Olli Polo's presentation at IiME, in the first of my articles on IiME which should hopefully be published later this week...
     
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  14. halcyon

    halcyon Senior Member

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    My guess is that there is an EDS+POTS group that looks very similar or identical clinically to CFS. In really strictly defined ME patients my bet is that the orthostatic tachycardia is due to nerve damage and not overcompliant veins.
     
  15. ChrisArmstrong

    ChrisArmstrong

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    It's possible yes, the structural proteins of everything important are made of the non-essential amino acids, the amino acids of interest here. They are non-essential because they can be made in the body and that's the very reason they are used in such high amounts for important large structural proteins (even if malnourished during development you can still form these important proteins).
     
  16. ChrisArmstrong

    ChrisArmstrong

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    Powder amino acids might help, we're going to start monitoring a few patients over time to accurately determine correct ratios of supplements to see if we get a correlation in symptom improvement and to see what ratios of amino acids are optimal for the individual. This is just a treatment to help, we still believe the issue with glucose management is the important thread to pull.
     
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  17. bertiedog

    bertiedog Senior Member

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    I cannot take added amino acids because they affect my neurotransmitters and make me feel almost manic. It's horrible so I have never been able to take them for more than a week before I realise what is happening. I agree with regard to managing one's glucose I am aware of this every day and I am really careful about what I eat.

    Pam
     
  18. ChrisArmstrong

    ChrisArmstrong

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    I have the similar thing as part of my anxiety disorder. It has something to do with the balance of amino acids you take. For instance your amino acids that generate dopamine and serotonin all share the same transporter as BCAA's and they competitively inhibit each other. I tried using BCAA's thinking they might be good but I think they altered my ability to transport dopamine (tyrosine and phenylalanine) and serotonin (tryptophan).

    This is the reason we are doing the monitoring study to look at ratios.
     
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  19. Richard7

    Richard7 Senior Member

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    Ok would this relate to @Hip's thing about crepe paper skin wrinkles.https://chronicsorethroat.wordpress.com/
     
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  20. ChrisArmstrong

    ChrisArmstrong

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