Exhaustion in ME/CFS, what is it and what causes it - discussion thread

[Jonathan Edwards]

Discussion moved from this thread

There are a few issues with this.

Firstly exhaustion is the big factor it seems for many. Which leads to a 'can't'

But the question is - what is 'exhaustion' in the context of ME/CFS. We have little evidence that it is actually depletion of energy reserves or a 'run down battery'. It certainly seems to feel like that but there is no shortage of oxygen or glucose and almost certainly not of ATP. More likely something is shifting the power usage regulator to the wrong position and that is apparent partly through a completely involuntary block and partly through a sense of intolerability that prevents voluntary effort.

 

[Sean]

More likely something is shifting the power usage regulator to the wrong position and that is apparent partly through a completely involuntary block and partly through a sense of intolerability that prevents voluntary effort.

And partly, in the voluntary sense, from very hard earned experience about what happens when we do try to ignore it and push through.

Which is what pacing is all about.

 

[JemPD]

Dont want to go too far off topic but could/would this

More likely something is shifting the power usage regulator to the wrong position and that is apparent partly through a completely involuntary block and partly through a sense of intolerability that prevents voluntary effort.

be the same mechanism by which the body is 'told' to rest during a nasty infection of some kind?
I mean could an infection affect the 'power usage regulator' in the same/similar way?

Giving rise to the flu-like experience so many of us have - ie 'i dont feel tired i feel ill'

??

 

[Lindberg]

But the question is - what is 'exhaustion' in the context of ME/CFS. We have little evidence that it is actually depletion of energy reserves or a 'run down battery'. It certainly seems to feel like that but there is no shortage of oxygen or glucose and almost certainly not of ATP. More likely something is shifting the power usage regulator to the wrong position and that is apparent partly through a completely involuntary block and partly through a sense of intolerability that prevents voluntary effort.

When I crashed severely for the first time I had tried to walk to our mailbox outside the house. Soon the legs began dragging and once I was back in the house I tried to get to my bedroom upstairs. I had to crawl and drag myself up the stairs with several stops in order to get there. There was no “sense of intolerability that prevents voluntary effort”. I gave it my all but the muscles lacked capacity.

Once in bed the body shut down. Even the facial muscles didn’t work. I could not make them to move in order to formulate words. So please don’t read into what we are describing as a sense of intolerance. Many of us have several episodes of experiencing a total lack of energy, a total lack of capacity. It’s devastating on the body, totally devastating. The only way forward was to do nothing. Being fed nutrition and rest in order to hopefully regain a higher functioning level.

 

[Turtle]

But the question is - what is 'exhaustion' in the context of ME/CFS. We have little evidence that it is actually depletion of energy reserves or a 'run down battery'. It certainly seems to feel like that but there is no shortage of oxygen or glucose and almost certainly not of ATP. More likely something is shifting the power usage regulator to the wrong position and that is apparent partly through a completely involuntary block and partly through a sense of intolerability that prevents voluntary effort.

How do you know there is no shortage of oxygen? Is there no connection in severe OI and oxygen?
And what about glucose when the Krebs-cycle can fall flat? When everything becomes over-exertion?
And ATP? Where is your proof.
The other part sounds like Walitt. An involuntary block that prevents voluntary effort?

 

[Kitty]

The other part sounds like Walitt. An involuntary block that prevents voluntary effort?

I don't think it sounds at all like Wallitt. People with some ion channel disorders have exactly that, and it varies from complete flaccid paralysis, to a poorly controlled staggering gait, to normal movement being possible but with heavy fatigue. There's nothing implausible about it.

 

[duncan]

People with some ion channel disorders have exactly that, and it varies from complete flaccid paralysis, to a poorly controlled staggering gait, to normal movement being possible but with heavy fatigue. There's nothing implausible about it.

Except for the effort part, which simply doesn't belong. People with channelopathies may have an involuntary block per se, but they still usually can exert normal effort; their muscles just don't respond as well. I have no clue what "sense of intolerability that prevents voluntary effort" might mean, but I don't believe it applies to pwME. I might feel intolerably crappy, but that won't prevent me from real effort.

 

[Yann04]

I think the confusion in ME is that pacing is “subjective”, it isn’t a hard limit, but it is necessary to avoid worsening.

I can legitimately do a lot of effort. There is nothing except a “hard limit” of fainting stopping me in the moment.

What will happen though is this will lead to my disease significantly worsening. Over time, I’ve learnt this, so the limit for my effort is a “psychologically calculated limit”, in that i calculate and limit it to avoid triggering physical consequences.

Just like I’d limit my consumption of rich foods so I don’t get stomach ache later. The limit is self-inflicted, based on an estimation of my real physical limits (which I’ll only be able to gauge after the fact).

We don’t know what causes the worsening after the fact, but we certainly know it is “real”, and that there is no guarentee it will be reversed. So for all purpuses it should be considered a hard limit, even if it doesn’t physiologically behave as one, because of the delayed element.

 

[Jonathan Edwards]

I mean could an infection affect the 'power usage regulator' in the same/similar way?

That would be my assumption. When we suddenly feel we cannot even stand up, or have to vomit, with 'gastric flu' that is not because of a sudden shortage of energy. It is a signalling system saying 'stop'.

 

[Jonathan Edwards]

Many of us have several episodes of experiencing a total lack of energy, a total lack of capacity. It’s devastating on the body, totally devastating.

I understand that - which is why I include in the concept of intolerance both a sense of intolerability and a simple impossibility to do things. The central nervous control system normally employs both mechanisms together. Pain prevents movement through the intolerability of the painfulness but also by making it impossible even to do the movement if you ignore the intolerability. There isn't a very good word for the combination, I realise. But we have no evidence for there actually being an energy deficit or an inability of the muscle to act. If you put an electric current through the muscle it would contract strongly.

 

[Jonathan Edwards]

How do you know there is no shortage of oxygen? Is there no connection in severe OI and oxygen?
And what about glucose when the Krebs-cycle can fall flat? When everything becomes over-exertion?
And ATP? Where is your proof.
The other part sounds like Walitt. An involuntary block that prevents voluntary effort?

I don't know anything, I am not claiming to. But I am suggesting that what is often assumed isn't known either.
There is nothing to suggest a significant shortage of oxygen is involved in the vast majority of ME/CFS symptoms. There is no evidence for shortage of oxygen even in OI as far as I know. There may be some reduction in blood flow but the normal flow probably has a wide margin of adequacy.

I don't know what the Krebs cycle falling flat would mean? When we have flu and cannot stand up I know of no evidence for anything wrong with the Krebs cycle. You can produce the same effect by injecting endotoxin. The effect occurs within a minute or two. It is due to cytokine signals inhibiting activity, not lack of energy.

What I am saying is very different from what Walitt appears to be saying, although it is pretty unclear what he is trying to say. It has nothing to do with effort preference. It is a block to action at a level below anything voluntary, combined with a voluntary limitation because of the awfulness of how it feels. People are allowed to not do things because it hurts too much or it makes them sick or giddy in any other situation. I don't think the voluntary side should be played down either. As Sean says, there is even a planned limitation called pacing.

As I say, I do not know any of the answers but if the idea that ME/CFS symptoms are due to energy depletion in the ATP sense is wrong then basing personal action and medical intervention on that may make the situation worse just as much as wrong psychological theories may.

 

[bobbler]

But the question is - what is 'exhaustion' in the context of ME/CFS. We have little evidence that it is actually depletion of energy reserves or a 'run down battery'. It certainly seems to feel like that but there is no shortage of oxygen or glucose and almost certainly not of ATP. More likely something is shifting the power usage regulator to the wrong position and that is apparent partly through a completely involuntary block and partly through a sense of intolerability that prevents voluntary effort.

Indeed - and the whole fatigue thing itself has been made into being seen as mental health somehow which is an extraordinary feat in itself.

it’s made for a weird communication cul de sac

 

[MrMagoo]

I think the confusion in ME is that pacing is “subjective”, it isn’t a hard limit, but it is necessary to avoid worsening.

I can legitimately do a lot of effort. There is nothing except a “hard limit” of fainting stopping me in the moment.

What will happen though is this will lead to my disease significantly worsening. Over time, I’ve learnt this, so the limit for my effort is a “psychologically calculated limit”, in that i calculate and limit it to avoid triggering physical consequences.

Just like I’d limit my consumption of rich foods so I don’t get stomach ache later. The limit is self-inflicted, based on an estimation of my real physical limits (which I’ll only be able to gauge after the fact).

We don’t know what causes the worsening after the fact, but we certainly know it is “real”, and that there is no guarentee it will be reversed. So for all purpuses it should be considered a hard limit, even if it doesn’t physiologically behave as one, because of the delayed element.

Very few people, and very few medics, especially those who’ve never met a person with ME, will be comfortable taking their cues as to what’s “too much effort” from the patient. That sets off “manipulation” alarms.

It’s also like the old “you’re the expert in your condition” medics say, until you start chucking studies and research at them. Then you’re over-medicalised.

 

[Jonathan Edwards]

I have no clue what "sense of intolerability that prevents voluntary effort" might mean,

Surely this is a common situation. If I have severe pain in my back I cannot bring myself to do something that will exacerbate that pain however much I might want to. If I have vertigo I cannot bring myself to stand up in the knowledge that I would vomit yet again.

I may be wrong but listening to people on the forum I have come to understand that this is how things are with ME/CFS. Sean certainly seemed to think so, and Kitty and some others I think.

The fact that Maeve could do things some times and not others to me is readily explained by this sort of intolerability - the amount you can manage varies with just how much the intolerability is blocking your efforts. If that is acknowledged there is a logical way of explaining why this variability is entirely consistent with symptoms that are impossible to overcome. If you say that however awful it feels you can go on trying just as hard then frankly I have to assume it doesn't feel that awful. Life isn't like that, is it?

I am trying very hard to get an understanding of symptoms that explains the way people's abilities vary such that the sceptics don't believe. My conclusion has been that if you just accept that people with ME/CFS actually feel ill in the way that everyone feels very ill in one way or another at times then the variation is actually entirely as expected. But it probably has nothing to do with energy in the ATP sense.

 

[duncan]

Surely this is a common situation. If I have severe pain in my back I cannot bring myself to do something that will exacerbate that pain however much I might want to. If I have vertigo I cannot bring myself to stand up in the knowledge that I would vomit yet again.

I may be wrong but listening to people on the forum I have come to understand that this is how things are with ME/CFS. Sean certainly seemed to think so, and Kitty and some others I think.

The fact that Maeve could do things some times and not others to me is readily explained by this sort of intolerability - the amount you can manage varies with just how much the intolerability is blocking your efforts. If that is acknowledged there is a logical way of explaining why this variability is entirely consistent with symptoms that are impossible to overcome. If you say that however awful it feels you can go on trying just as hard then frankly I have to assume it doesn't feel that awful. Life isn't like that, is it?

I am trying very hard to get an understanding of symptoms that explains the way people's abilities vary such that the sceptics don't believe. My conclusion has been that if you just accept that people with ME/CFS actually feel ill in the way that everyone feels very ill in one way or another at times then the variation is actually entirely as expected. But it probably has nothing to do with energy in the ATP sense.

It's one thing to debate capability when it comes to most diseases. But I fear the lines blur when we venture into volition and effort. This may be even truer for illnesses like LC and ME. These and a handful of other contested diseases find themselves victims of a warped sort of medical predation where concepts such as "effort" have been weaponized at their expense. So why even go there? It doesn't belong in a serious discussion about ME/CFS anymore than it does on Covid or cancer if only because it invites such harm.

I appreciate wanting to explore all the facets of ME, and that's good and important. It's unfortunate we have to be wary when we should just be learning.

 

[Jonathan Edwards]

So why even go there?

Because I see it as the central truth of the problem - and I doubt anyone will get anywhere until that is openly discussed.

If the problem is portrayed as simply an impossibility of action due to lack of energy resources then variability in ability makes no sense. If it is based on a complex inhibitory mechanism it makes perfect sense and restores ME/CFS to the world of real illness where we see that all the time.

 

[Kitty]

But I fear the lines blur when we venture into volition and effort. This may be even truer for illnesses like LC and ME. These and a handful of other contested diseases find themselves victims of a warped sort of medical predation where concepts such as "effort" have been weaponized at their expense. So why even go there?

I don't think it is about volition and effort. It's about intolerability, and nobody gets to adulthood without experiencing that for themselves. The advantage of basing the conversation on common experience is that it doesn't demand the theorising that only ends up in argument and delay. I don't imagine it'd be easy to convince people who're already fixed in their thinking, but it's more likely to work than making stuff up.

 

[MrMagoo]

I don't think it is about volition and effort. It's about intolerability, and nobody gets to adulthood without experiencing that for themselves. The advantage of basing the conversation on common experience is that it doesn't demand the theorising that only ends up in argument and delay. I don't imagine it'd be easy to convince people who're already fixed in their thinking, but it's more likely to work than making stuff up.

We don’t know how it happens, but we can focus on the fact that it does happen.

And people need to stop using “fatigue” even Beth the dietician said Maeve became “extremely exhausted” from having her obs done. Basically taking blood pressure or temp, looking in her eyes made her even more incapacitated.

 

[duncan]

Because I see it as the central truth of the problem - and I doubt anyone will get anywhere until that is openly discussed.

Why do I get the impression we are not talking about the same thing? Regardless, I think the central truth of the problem is medical politics compounded by a lack of proper tools - and the spine to look - to reveal what is making and keeping us sick.

If the problem is portrayed as simply an impossibility of action due to lack of energy resources then variability in ability makes no sense.

I don't think many ME veterans would oversimplify like that. We are well aware of the complex of symptoms and that a myriad of factors might be at play.

 

[Keela Too]

Because I see it as the central truth of the problem - and I doubt anyone will get anywhere until that is openly discussed.

If the problem is portrayed as simply an impossibility of action due to lack of energy resources then variability in ability makes no sense. If it is based on a complex inhibitory mechanism it makes perfect sense and restores ME/CFS to the world of real illness where we see that all the time.

This might all need a new thread, but let me throw a couple of thoughts into the mix.

Firstly, as I see it there are two very different barriers to exertion:

1. In the moment Fatiguability.
This is similar to a proper exhaustion, in that it feels like the body can literally do no more. An extra shot of adrenalin, might give a bit extra, but only on the very short term.

2. The problem of PEM/PESE.
This is the more frightening one, because letting PEM happen can mean a permanent downturn of the illness trajectory.

In my experience, these two barriers to exertion can feature differently at points in the illness timeline.

When I was first ill, I allowed myself to keep doing stuff until fatiguability hit, but I quickly learned that the after-effects were not good. So I started to pull back before fatiguing set in.

In my first 4 years of having ME, I was constantly having to do less and less to prevent PEM, and the inevitable ratcheting downwards that I experienced afterwards. So I started to pace much more carefully. I was rarely “tired” because I always stopped well short of any fatiguing if at all possible. I disliked being in situations where I wasn’t in full control of what was going on. In truth, I was on a very scary downwards trajectory.

At the start of my 5th year ill, things changed. (It’s no secret that I took Viread/Tenofovir, and that I give it full credit for my turnaround… n=1 and all that. Sadly, others did not do so well on it.)

Anyway after that point, my PEM threshold improved. I became able to DO more, and so I became able to allow some fatiguing before having to pace myself. So the emphasis became different.

I think any discussion of the physical limitations of ME needs to account for both Fatiguability AND PEM, because in my experience they are very different beasts. And a pwme pacing to avoid PEM could of course look as though they are exhibiting a purely voluntary “avoidance” behaviour. As we all know of course, it is a learned behaviour though to avoid deterioration due to PEM.

Yet I also wonder do we need another PEM category? PEM+D

ie PEM that is always followed by Deterioration?

Because at one point that is what I had, and what I have heard others describing when they are on a spiralling downwards trajectory.

At that time, I often felt that PEM alone to “pay for” a nice activity might be okay, if I could guarantee I wouldn’t lose any functioning with the PEM. At that time my PEM always seemed to have the +D bit added.

Now that I am less unwell, my PEM happens less severely, and without the +D bit, which is obviously the scary, scary part. I can take more risks now (still calculated of course).

So I think what I’m trying to suggest is that there might well be more than one process involved in what limits the exertions of pwme. Johnathan, I appreciate you trying to understand all this. It isn’t easy to get my head around even after living with ME for 12 years now.

Anyway, sorry that this pulls things off topic. I have been following this thread, and fully appreciate everyone who is contributing to it.