Do ME symptoms fit with the faulty energy metabolism hypothesis?

Trish

Trish

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Jonathan Edwards said:
ME I am sceptical about any hypotheses that try to explain symptoms on the basis of impaired energy metabolism. The symptoms don't fit with that because they occur after the exertion more than during it.
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My experience is both during and after. I would describe 3 phases:

1. During exertion - rapid muscle fatiguability (and increasing pain) that means I can't go on using a muscle for long before it loses strength. So right from the beginning of my illness, when I was fit, it meant not being able to walk more than a hundred metres or so, or stand for more than about 10 minutes, before I felt my legs were going to go from under me and had to hastily sit down and rest.

2. Immediately after activity - includes increased pain, slow recovery from exertion, and reduction in ability to repeat the same activity without significant rest in between.

3. PEM - results from the cumulative effect of pushing to my limit repeatedly over a day or 2 - then all my other symptoms worsen so I'm unable to get out of bed for days or longer.

So even when pacing carefully and avoiding PEM, I still experience phases 1 and 2 every time I do any physical activity. That to me seems like it could be explained by faulty energy metabolism that limits the ability of muscle cells to meet demand, and slow recovery from that demand.

The difference from mild to moderate/severe for me is that the distance before my legs lose strength has reduced from about 100 to 10 metres, and standing time from 10 minutes to 1 minute. It's the difference between being able to teach part time (with difficulty) and being housebound and mostly bedbound.
 
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Trish said:
My experience is both during and after. I would describe 3 phases:

1. During exertion - rapid muscle fatiguability (and increasing pain) that means I can't go on using a muscle for long before it loses strength. So right from the beginning of my illness, when I was fit, it meant not being able to walk more than a hundred metres or so, or stand for more than about 10 minutes, before I felt my legs were going to go from under me and had to hastily down sit and rest.

2. Immediately after activity - includes increased pain, slow recovery from exertion, and reduction in ability to repeat the same activity without significant rest in between.

3. PEM - results from the cumulative effect of pushing to my limit repeatedly over a day or 2 - then all my other symptoms worsen so I'm unable to get out of bed for days or longer.

So even when pacing carefully and avoiding PEM, I still experience phases 1 and 2 every time I do any physical activity. That to me seems like it could be explained by faulty energy metabolism that limits the ability of muscle cells to meet demand, and slow recovery from that demand.
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This is exactly how I would describe my sympoms with regard to fatigue and PEM.
 
Jonathan Edwards said:
The symptoms don't fit with that because they occur after the exertion more than during it.
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If I do not push through the after exertion events are less severe. lately I have been working in the garden I can not doing it standing, must sit on my knees but I have removed a lot of weed that way. If I stop in time and rest a while I can go on with what I was doing, If I do not stop in time I crash and must pay for it.
 
My question is if it isn't impaired energy metabolism then what is it?

I had a panel of test done years ago that indicated that I was malnourished despite eating a very healthy diet. I was completely depleted in magnesium and omega 3 acids.
 
Mij said:
My question is if it isn't impaired energy metabolism then what is it?
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The symptom pattern sounds to me much more like what happens when developing a viral infection like flu. You find you cannot do a normal task, feel worse after and then worse still later and cannot begin to try again. You end up lying in bed not wanting to see or hear anything. And none of that is due to faulty energy metabolism. As far as we know it is due to signals like interferons blocking the ability to use muscles.
 
The cumulative and possibly delayed effect suggests that it's more a problem of sustainability than an inability to generate energy (although that is also present).

Maybe the problem with energy generation is increased oxidative stress, and PEM is a way to force us to minimize exertion while the body slowly recovers.

I find that the switch from OK to PEM also tends to occur over night, suggesting that something happens during sleep.
 
Jonathan Edwards said:
The symptom pattern sounds to me much more like what happens when developing a viral infection like flu. You find you cannot do a normal task, feel worse after and then worse still later and cannot begin to try again. You end up lying in bed not wanting to see or hear anything. And none of that is due to faulty energy metabolism. As far as we know it is due to signals like interferons blocking the ability to use muscles.
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Thank you. That makes sense to me. So might the energy metabolism differences being found/hypothesised in PBMC's be a downstream effect of that same process?
 
Jonathan Edwards said:
The symptom pattern sounds to me much more like what happens when developing a viral infection like flu. You find you cannot do a normal task, feel worse after and then worse still later and cannot begin to try again. You end up lying in bed not wanting to see or hear anything. And none of that is due to faulty energy metabolism. As far as we know it is due to signals like interferons blocking the ability to use muscles.
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I do agree with this as a possibilty, but there is one thing that also doesn’t correspond with this: the peripheral effects on the muscles that you used. The muscle weakness is specific to the muscles that were used.
 
strategist said:
I find that the switch from OK to PEM also tends to occur over night, suggesting that something happens during sleep.
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Yes, definitely (for me too)! If I overdo things on a 'better day' than I find it hard to go to sleep as I feel mentally 'wired' but physically tired. But the 'crash', extreme worsening of all my ME symptoms (physical and cognitive) happens the next day - only after sleeping - sometimes worsening again over the next 24-48 hours. Then a gradual improvement, maybe over days or weeks, until I am back to my 'normal' (which is obviously still moderate-severe ME).
 
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unicorn7 said:
I do agree with this as a possibilty, but there is one thing that also doesn’t correspond with this: the peripheral effects on the muscles that you used. The muscle weakness is specific to the muscles that were used.
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Good point. Same for me.

Another example is I can no longer write much without my handwriting deteriorating. When I was teaching I really struggled with report time, when I had to hand write dozens of half page reports on students in limited time. When I was well I could write for hours without problems. Now when I write a cheque by the time I get to my signature it's barely legible. I'm not sure that fits with @Jonathan Edwards' idea.

And if it's like an infection, why would doing repeated activity in a day bring on PEM, when just doing it once or twice isn't a problem apart from the immediate effects? Surely if the biological process is bad enough to cause PEM, we would have PEM all the time. In an infection that is bad enough to put you to bed, the level of activity the day before is irrelevant.

I don't think I'm thinking or expressing myself clearly. I'd better stop.
 
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