1. Sign our petition calling on Cochrane to withdraw their review of Exercise Therapy for 'CFS'.
    Dismiss Notice
  2. Guest, the 'News in Brief' for the week beginning 4th November 2024 is here.
    Dismiss Notice
  3. Welcome! Read the Core Purpose and Values of our forum.
    Dismiss Notice

Do ME symptoms fit with the faulty energy metabolism hypothesis?

Discussion in 'Post-Exertional malaise and fatigue' started by Trish, May 6, 2019.

Tags:
Page 1 of 6
  1. Trish

    Trish Moderator Staff Member

    Messages:
    55,414
    Location:
    UK
    Mod note: Moved from this thread

    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.
     
    Last edited: May 6, 2019
    Trish, May 6, 2019
    #1
    coFi94, Louie41, merylg and 38 others like this.
  2. Spun

    Spun Established Member

    Messages:
    15
    Location:
    Munich
    Same for me
     
    Spun, May 6, 2019
    #2
    Ellie_Finesse, Yessica, Louie41 and 13 others like this.
  3. Simbindi

    Simbindi Senior Member (Voting Rights)

    Messages:
    2,746
    Location:
    Somerset, England
    This is exactly how I would describe my sympoms with regard to fatigue and PEM.
     
    Simbindi, May 6, 2019
    #3
    Ellie_Finesse, Barry, Louie41 and 13 others like this.
  4. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    14,850
    Location:
    UK West Midlands
    Wot @Trish said although I can walk further before it kicks in under 1.
     
    NelliePledge, May 6, 2019
    #4
    Barry, Louie41, AliceLily and 14 others like this.
  5. lansbergen

    lansbergen Senior Member (Voting Rights)

    Messages:
    616
    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.
     
    lansbergen, May 6, 2019
    #5
    coFi94, sea, Barry and 12 others like this.
  6. Mij

    Mij Senior Member (Voting Rights)

    Messages:
    9,559
    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, May 6, 2019
    #6
    Ellie_Finesse, Barry, Louie41 and 7 others like this.
  7. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,175
    Location:
    London, UK
    So the problem is that a defect in ATP generation does not explain the triple problem. It might explain the first but not the others. That means we need another explanation as well and one always likes to minimise the number of explanations needed.
     
    Jonathan Edwards, May 6, 2019
    #7
    Ellie_Finesse, sea, janice and 12 others like this.
  8. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,175
    Location:
    London, UK
    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.
     
    Jonathan Edwards, May 6, 2019
    #8
    coFi94, spinoza577, Ellie_Finesse and 23 others like this.
  9. lansbergen

    lansbergen Senior Member (Voting Rights)

    Messages:
    616
    I think the ATP problem is a result of something else. I would say find that something else.
     
    lansbergen, May 6, 2019
    #9
    AliceLily, Ravn, andypants and 8 others like this.
  10. Hoopoe

    Hoopoe Senior Member (Voting Rights)

    Messages:
    5,425
    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.
     
    Hoopoe, May 6, 2019
    #10
    coFi94, Ellie_Finesse, Forbin and 11 others like this.
  11. Trish

    Trish Moderator Staff Member

    Messages:
    55,414
    Location:
    UK
    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?
     
    Trish, May 6, 2019
    #11
    Barry, Ellie_Finesse, sea and 9 others like this.
  12. lansbergen

    lansbergen Senior Member (Voting Rights)

    Messages:
    616
    I have no doubt oxidative stress is a big player.
     
    lansbergen, May 6, 2019
    #12
    Louie41, AliceLily, Ravn and 7 others like this.
  13. unicorn7

    unicorn7 Senior Member (Voting Rights)

    Messages:
    338
    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.
     
    unicorn7, May 6, 2019
    #13
    Ellie_Finesse, Barry, Snow Leopard and 10 others like this.
  14. lansbergen

    lansbergen Senior Member (Voting Rights)

    Messages:
    616
    I agree
     
    lansbergen, May 6, 2019
    #14
    Ravn, rvallee, MEMarge and 1 other person like this.
  15. Simbindi

    Simbindi Senior Member (Voting Rights)

    Messages:
    2,746
    Location:
    Somerset, England
    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).
     
    Last edited: May 6, 2019
    Simbindi, May 6, 2019
    #15
    Samuel, AliceLily, Ravn and 7 others like this.
  16. Inara

    Inara Senior Member (Voting Rights)

    Messages:
    2,734
    This is my experience, too. I also have muscle weakness during and after activity, only afterwards it's worse (obviously), and during PEM, too.

    For me, personally, problems in energy metabolism (as a consequence of sth else) makes sense.
     
    Inara, May 6, 2019
    #16
    AliceLily, Ravn, andypants and 5 others like this.
  17. Trish

    Trish Moderator Staff Member

    Messages:
    55,414
    Location:
    UK
    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.
     
    Trish, May 6, 2019
    #17
    Barry, Ellie_Finesse, sea and 12 others like this.
  18. Simbindi

    Simbindi Senior Member (Voting Rights)

    Messages:
    2,746
    Location:
    Somerset, England
    Seconded!
     
    Simbindi, May 6, 2019
    #18
    MEMarge and Trish like this.
  19. Jonathan Edwards

    Jonathan Edwards Senior Member (Voting Rights)

    Messages:
    15,175
    Location:
    London, UK
    yes I think so
     
    Jonathan Edwards, May 6, 2019
    #19
    Barry, TrixieStix, andypants and 5 others like this.
  20. Annamaria

    Annamaria Senior Member (Voting Rights)

    Messages:
    260
    Annamaria, May 6, 2019
    #20
Page 1 of 6

Share This Page