Review: 'Through the Shadowlands’ describes Julie Rehmeyer's ME/CFS Odyssey
I should note at the outset that this review is based on an audio version of the galleys and the epilogue from the finished work. Julie Rehmeyer sent me the final version as a PDF, but for some reason my text to voice software (Kurzweil) had issues with it. I understand that it is...
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Deconditioning Theory IS DUMB!

Discussion in 'General ME/CFS Discussion' started by lnester7, Oct 2, 2013.

  1. Gijs

    Gijs Senior Member

    'Carbon dioxide build-up from not exhaling fully will cause feelings of panic..''
    I agree this is the beginning of the problem, i feel the same.

    If you can not fully exhaling what causes this phenomenon? That is the central focus for me. Let me starting to say that deconditioning is not the cause it does not make sense. Many of us had a very good condition when this disease started at one point. PH problem, like acidose?
  2. peggy-sue


    I do not know.
    I believe the problem in ME is mitochondrial - we cannot produce enough energy to function properly.
    We don't do much aerobic metabolism - anaerobic is about all we can manage - hence the build-up of lactic acid in muscles.

    When this energy production deteriorates to a very low level, even normal body functions, such as breathing, or maintaining body temperature, become too much effort to do unconsciously, conscious effort has to be applied.

    So breathing will become very shallow and laboured. You do have to make a big effort to breathe out a lot - and to breathe in enough.

    Not breathing out enough will allow a concentration of carbon dioxide to build up in your lungs.
  3. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
    I tend to think we do not strictly have a mitochondrial problem. We have a problem in ramping up mitochondrial function, possibly as Myhill suggests due to limitations on the transfer rate of key substances across the mitochondrial membrane. So this problem in moderate or mild patients probably will not show up at rest, only under challenge. However I think the worst moderate patients and all those severe or worse, probably cannot ramp up enough to do basic chores for most of the time.

    When we try to push mitochondria beyond their limits, the first thing seen is lactic acid buildup. If in our case there are substrate limitation, or cofactor limitations, or whatever, then this might damage the mitochondria, or alternatively send a signal to the body that says STOP.

    Such limitations fit with the deconditioning hypothesis only under resting conditions. Lying down resting we kind of resemble deconditioned people. As soon as stress is put on the system though, the energy production goes into crisis. This also fits with the CPET studies.

    Also there is a possibility of damage to key enzymes in the mitochondria if oxidative stress levels spike. Some have low replacement rates if damaged or destroyed. NO inactivates aconitase (needed to process citric acid for the Krebs cycle) for example, but ONOO destroys it. If destroyed it has to be imported from the rest of the cell, as mitochondria do not make their own aconitase. Folding of aconitase to a useful form requires glutathione. In conditions of prolonged oxidative stress and aconitase damage it would take time to replace it. This is of course only one of many possible mechanisms.
    stridor, SOC, Ruthie24 and 1 other person like this.
  4. peggy-sue


    Deconditioning does not fit my "profile" in the slightest. :)

    I was fit and healthy when I became very suddenly ill - it took only a couple of seconds - I was in the middle of a great long hike at the time.
    I have only taken to my bed for perhaps 3-4 days.

    I'm not as fit or as strong as I was - I am unable to maintain the level of fitness I had before.
    Ruthie24 likes this.
  5. ukxmrv

    ukxmrv Senior Member

    I don't get feelings of panic. Also had my blood and gases tested in the early 1990's and there were no problems detected then. At that time there was a doctor who thought ME was caused by Hyperventilation and he was very disappointed at my results......

    Although I do get sensations of "air hunger" and times when I am too weak to breath properly there are also times when my breathing is fine and it makes no difference to my ME symptoms. It's the other way around for me, if I am weak with a bad bout of PEM then all my systems are slowed down or impaired (and that includes breathing I think).

    My ME started with an acute viral onset that was severe. I was unconscious and delirious with fever.

    We are all so different.
  6. stridor

    stridor Senior Member

    Powassan, Ontario
    Just some notes.
    Air hunger was also part of my adrenal crisis, before I started on hydrocortisone. Literally, I would stop talking because it put me out of breath. I have spoken with others who have had this too. This symptom I not strictly ME.
    The inability to stand was what forced me off the job "incapable to perform duties". I read that it was a "measurable change in circulation to the brain". I thought about that and then got tested for MS.

    I have bidirectional blood flow on the left side = CCSVI. I since learned that there is a theory that almost all of us with ME have this and that it is proposed that it is due to mitochondrial problems in the heart affecting the patency of the tricuspid valve and the blood that is regurgitated increases venous congestion in the brain and liver.

    For those of us who have or had this symptom, it seems to me that we have a ballpark measurement on overall mitochondrial function available to us. For example, the more mB12 I took the less of a problem I had with standing. By extrapolation, I am able to conclude that the mitochondria in my brain are happier too. I have taken the inability to stand as my "clue" that the mitochondria are unhappy and that I should avoid exercise/activity. Conversely, the ability to stand is a sign that I can incrementally introduce an exercise.

    I have TCN2++ which is for the active transport of B12 across membranes, into the brain etc. In spite of this obviously increasing my need for B12, the main process that affects me could still be the lack of B12 preservation due to a lack of glutathione. It is a "Catch 22". Not enough B12 to drive methylation/sulphation/glutathione production which then leads to not enough glutathione to retain B12 to fuel methylation.

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