Andy's attempt to create a reasonable descriptive model of ME.

Discussion in 'General ME/CFS news' started by Andy, Aug 23, 2019.

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  1. Marky

    Marky Senior Member (Voting Rights)

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    It certainly feels that way! Maybe our minds are more active at night giving us PEM :p
     
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  2. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    The above modelling uses time as a variable but does not address what the crucial time periods are. I suspect at present we are not able to give any definitive answers, but this does have implications for whether we are looking at a rate of energy expenditure being the limiting factor or the total energy available at any one point in time being the issue.

    Also this could have major implications for how we pace ourselves and how long we should rest to prevent PEM or to recover from PEM.

    With the battery analogy, drawing energy is limited by the rate the system can access the stored energy and there is a total fixed amount of energy that is available without recharging the battery. I guess in the human system some recharging happens all the time, so there is also the relationship between the relative rates of energy consumption and energy storing to take into account.

    Older batteries worked best when allowed to fully charge and then used till the batteries are nearly flat. So a pattern of activity and rest. Use the system for x hours or x amount of activity then recharge for y hours. This corresponds to the widespread belief that normal humans should be active during the day then sleep for 7 or 8 hours at night. And this presumably explains the Sleep Police many of us encounter who believe they can cure ME by reestablishing this pattern.

    Newer batteries are more flexible, and using devices while they are plugged in is less likely to shorted the life of a battery. Obviously it matters what the relationship between the rate of consumption and storage is. For example my iPad can store energy at a faster rate than normal use so it can be used while charging, though the charging may be a little slower, however the battery in my old iPad had deteriorated such that it used energy quicker than it could store while being used on charge, so periods of total inactivity were required for it to function.

    Clarifying these parameters in ME would suggest ways to structure our activity ... ...

    ... .... I did have a train of thought that seemed to make sense when I started this post but I have lost it. Pondered whether to abandon this all together, to save it to return to, or to share my incomplete thought in the hope that it others can get something from it .... well here it is anyway.
     
    Last edited: Aug 30, 2019
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  3. Trish

    Trish Moderator Staff Member

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    You make lots of good points about how complex PEM is, Peter, I agree it's far too multifactorial to be successfully conveyed graphically. But that doesn't mean simple visual illustrations are useless.

    I think mine might be the only one that used calories burnt as a scale - I did that simply to get some idea of where basal metabolism came so the vertical scale is not too distorted, I hope.

    On a two dimensional graph being used as a simple illustration to get a single idea across, you can only really include two variables - in this case, activity and time.

    That's why, in my illustration I focused only on the sort of pattern of effect that seems to happen if pwME try to do GET, which will inevitably lead to hitting whatever ceiling they have at the time, and lead to PEM and if pushed too often and too hard over time, can lead to lowering of the ceiling.

    I don't know whether my idea is any use for Andy's purposes. The other examples given on this thread take a different time scale and show the same sort of thing in a different way. All potentially helpful, none claiming to show the whole complexity of living with ME.
     
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  4. Barry

    Barry Senior Member (Voting Rights)

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    But sleep is presumably the time when a healthy person's body is performing some of its energy replenishment activity? And if that mechanism is broken then it may only be partially fulfilled upon waking.
     
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  5. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

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    I did not intend to criticise what you said, rather to suggest as it is developed it could be extended to include more aspects of ME.

    [What important is to develop ways of describing the phenomenon that are sufficiently neutral to enable us to point out the implicit claims in so much of most health professionals management and treatment approaches.]
     
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  6. Trish

    Trish Moderator Staff Member

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    Don't worry Peter, I didn't take it as criticism, just wanted to clarify, as much for myself as anyone else, why visual illustrations to make a specific point inevitably oversimplify.

    I might have a go at doing a new graph with more variables complicating the picture. An interesting challenge. Thank you.
     
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  7. Mij

    Mij Senior Member (Voting Rights)

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    I received an interesting article on my Twitter feed regarding measuring temperature inside of a cell.

    I have taken my temperature (for one month) years ago during PEM (day after exercising) to give my functional doctor and found that my body temperature dropped to 95.5 F every time. Not sure there's a relationship in this case.
     
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  8. Mij

    Mij Senior Member (Voting Rights)

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    "Producing heat is part of the mitochondria's role in the center of metabolism activity," Sinha said. "It needs to produce the energy currency that's used for the activities in the cell, and heat is one of the byproducts, in most cases. But there is a mechanism that can ramp this process up to produce more heat when the body needs it. That's what fat cells do when they're in need of heat when the body's temperature goes down."
     
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  9. Barry

    Barry Senior Member (Voting Rights)

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    Interesting nonetheless. I wonder if there is a correlation?
     
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  10. Mij

    Mij Senior Member (Voting Rights)

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    @Andy found this

    After Exercise
    After you stop exercising, the rate at which your body produces heat decreases, while the mechanisms you use to dissipate heat remain in operation until your core temperature returns to its normal level. Your core temperature doesn't drop below normal levels, however, unless another health condition is involved. Normal resting core temperatures can range from 97.7 to 99.5 degrees Fahrenheit. It may take a little time before elevated temperature during exercise returns to normal.
     
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  11. AliceLily

    AliceLily Senior Member (Voting Rights)

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    @Ravn I liked your graph. A good start in helping to show the ME/PEM experience. Thanks.
     
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  12. Ravn

    Ravn Senior Member (Voting Rights)

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    Thank you @Rosie. The battle with the graphing app - I'm a novice at that sort of thing - cost me a few extra grey hairs so I'm glad you found the result useful.

    And thanks @Andy for starting the idea of describing PEM in the form of a graph. It's difficult to force a great deal of complexity into a simple graph but I found it helped clarify my thinking, and that has to be a good thing. ;)

    I still have a vague sense I'm missing something somewhere but can't quite put my finger on it. May need to do more graphing...
     
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