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

[JemPD]

That does not mean that I am not expending as much effort as I possibly can to achieve my task and in fact much more than I ever used to need to but there is still this aspect of a block to action.

Yes i have often remarked that when in PEM stairs feel like the 'north face of the Eiger' - requiring more strength and stamina than i have even when dragging self up on hands & knees with legs that 'wont work', but also more skills than i can bring to bear.

Doing and thinking is intolerable in a complicated way but a way that parallels what most people are quite familiar with in flu or acute vertigo or even with a tooth abscess.

This is interesting, because while my bodily experience of ME is of 'Flu+', my cognitive issues feel like nothing i have experienced outside being 'stoned', on drugs/sedated. I simply cannot comprehend the simplest things. Spending minutes unable to understand & do things that when well were '2nd nature' to me. Making mistakes making a cup of tea, forgetting how to log into my bank account or spending several minutes not understanding why i couldnt get a dial tone while holding the tv remote up to my ear believeing it was the phone.


And just not being able to understand what people are saying, even with the simplest phrases, i can understand maybe one word of whats said - its like theyre speaking a foreign language, it just becomes gibberish.

I never had that kind of difficulty during an infection, only when seriously stoned on cannabis (which is embarrassing but y'know "sex drugs & rock n roll" was a big part of my youth lol)

Not contradicting the signalling idea, because it makes sense, just wondering how this would fit in.

Edited: actually i am now going to contradict myself, having thought some more about it, i realise its not that i cannot comprehend, but that i need all the info to be given to me in such a way as to enable me to - ie at a very very slow rate - 1 word at a time, see my post below (#75). The experience of it being like being stoned i stand by though.

 

[JemPD]

So, if you would talk to me while I was at my worst I would sometimes answer you in a whisper, sometimes answer you with a thumbs up or sometimes answer you with silence in order to get enough strength to answer you later on. Consider me a hundred years old and you would probably understand how to best take care of me and also have the patience to wait for me to catch my breath. I wish compassionate patience was the approach the doctors and nurses would have when they meet a severe ME-patient.

Yes this its what its like for me during PEM - when the carer arrives i can whisper, but then they keep expecting you to be able to whisper a reply to every question & i just cant, and trying to makes me vomit. Same as when crawling to bathroom - halfway there i can just go no further and trying (unsuccessfully) to makes me throw up. I just have to wait there on the floor for a bit, before i can continue.
Weirdly the urgency to pee eases off a little at that point, before returning much worse a few mins later.

NB if someone makes sound (eg running water/neighbs music) or turns the light on while i am lying there waiting, i am lying there until the sensory stimulus ends. Its hard to explain to neighbs that their DIY leads to my having continence 'accidents'!

 

[JemPD]

Consider me a hundred years old and you would probably understand how to best take care of me and also have the patience to wait for me to catch my breath.

Actually this is a very good description, one i will use with new carer at beginning. Although, sadly many carers/nursing staff have no compassion when working with elderly! But at least the ones that do would have an idea

 

[hinterland]

I've not read the whole thread, but to me it's like the fatigue and exhaustion one gets with flu. I think it has to be immune mediated, if we're talking about post-exertion malaise then I think it has to be, otherwise, what other mechanism could cause the delayed onset and protracted recovery to baseline. In other words, it's not simply metabolic or exclusively to do with manufacture of ATP, there's something else happening upstream.

 

[Deanne NZ]

Yes, and that would fit with a signalling error along the lines of something like 'sickness behaviour' without necessary needing inflammation as such.

I am starting to get what you mean now.

Initially I was piqued by the inference that a behaviour was a choice so I looked up ‘sickness behaviour’ to learn more about it and now understand that it is not. It was helpful to see references to it in animals as well.
Getting back to what sparked this thread off, feeding problems in very severe ME, Sickness Behaviour is such a relevant state(?) to consider because loss of appetite / anorexia is one of the common behaviours in both humans & animals.

 

[Jonathan Edwards]

Initially I was piqued by the inference that a behaviour was a choice so I looked up ‘sickness behaviour’ to learn more about it and now understand that it is not. It was helpful to see references to it in animals as well.

Yes, 'sickness behaviour' is a dreadful term, based on what animals do when you inject them with nasty stuff. Presumably they feel awful but you cannot measure that.

 

[Kitty]

my cognitive issues feel like nothing i have experienced outside being 'stoned', on drugs/sedated. I simply cannot comprehend the simplest things.

This is interesting, because it's not like dementia either. I once experienced some of those symptoms due to a severe B12 deficiency. There's sometimes a comical quality when you look back on things you've done, misplaced, or misunderstood because of brain fog; with dementia, if you can remember the incidents at all, the nature and scale of the gaps is plain scary.

When we're talking about how to communicate care needs for very severely ill people in hospital, this is so risky an area that it might best be avoided. We know from Maeve's inquest that at least one person has already made assumptions about brain fog equalling lack of mental capacity, and I feel strongly that that can't be assumed.

Capacity in people with severe ME can't even be assessed with a test, because the instrument itself would cause lasting impairment. It would have to be assessed on the pattern over time, observed by someone skilled and experienced. Those skills probably only exist in family members, partners and home carers, and the opinions would likely be doubted because the individuals are 'unqualified'.

 

[duncan]

Because we have to. For two reasons: it has been turned into an unavoidable issue by the psychs ruthless exploitation of it, but also because understanding how volition works and doesn't work in ME/CFS is part of understanding ME/CFS.

Fair, although I think the way we deal with the pysch exploitation is to simply reply "insinuations involving effort and volition in any disease should be invoked with great caution, if at all. The risk to prejudice the medical community far outweighs the possibility to inform it."

As for understanding how volition works and doesn't work being part and parcel to understanding ME/CFS: How so? Other than having to defend ourselves, I consider both volition and effort virtually irrelevant to the disease process (I would be careful not to tie effort to exertion and PEM, though, because that is not how most intend "efforts" context.)

 

[Kitty]

I consider both volition and effort virtually irrelevant to the disease process

The process, yes, but to the experience of it? To understanding how to manage it? To making needs assessments, because volition and effort (whether applied by will or processes we can't control) cause significant and sometimes permanent worsening?

 

[duncan]

To understanding how to manage it? To making needs assessments,

I suspect this holds true for most diseases, from a cold or flu to Alzheimers and cancer, but you seldom see volition or effort summoned.

because volition and effort (whether applied by will or processes we can't control) cause significant and sometimes permanent worsening?

Yes, but here is when I think we needlessly and worrisomely conflate volition and effort with exertion. But, yes, point taken, albeit with the rider that it's a two-edged sword.

 

[Jonathan Edwards]

Yes, but here is when I think we needlessly and worrisomely conflate volition and effort with exertion. But, yes, point taken, albeit with the rider that it's a two-edged sword.

What do you mean by exertion, @duncan? Most people do pretty much equate it to effortful action.

If you mean usage of respiratory metabolic pathways the question is why would that lead to PEM?
When running a four mile race I had no real trouble most of the race despite using up lots of ATP. The trouble came when I made an extra effort to overtake people at the end. People explain that in terms of going above thresholds and producing lactate but for a very severe patient who finds it hard to sip from a straw this isn't a plausible explanation. Moreover, if ME/CFS involved an actual block to energy availability then we would expect the day 1 CPET results to show some unusual and characteristic shift - and as far as I know they don't.

 

[Ash]

It seems as though you are looking especially for an explanation regarding the variability in ability in severe and very severe ME-patients? And the explanation you find most relevant is to compare it with the sense of pain or dizziness or nausea, and the conscious and unconscious effort to avoid that? Is this a correct assumption or interpretation of your words?

Every person has experienced what you are describing, regardless of illness. That’s a part of being human. But every person has not experienced having severe ME where you have the strength to open the mouth, chew a bite of food and swallow it. Once, twice, maybe three times, but then it stops. You need a break to muster up new energy before you can do it again. I would say that those who probably know the best what this is like are very old, bed bound persons. How the exertion needs several breaks regardless of what kind of exertion it is. The less energy you have (or access to energy), the more you realize how everything is consuming energy. If you want to eat a full meal it might take hours. Not because you are avoiding unpleasant sensations, but because you can’t do it faster. The muscles simply don’t respond faster and they need rest in between.

So, if you would talk to me while I was at my worst I would sometimes answer you in a whisper, sometimes answer you with a thumbs up or sometimes answer you with silence in order to get enough strength to answer you later on. Consider me a hundred years old and you would probably understand how to best take care of me and also have the patience to wait for me to catch my breath. I wish compassionate patience was the approach the doctors and nurses would have when they meet a severe ME-patient.

Such a powerful description.

 

[Ash]

Actually this is a very good description, one i will use with new carer at beginning. Although, sadly many carers/nursing staff have no compassion when working with elderly! But at least the ones that do would have an idea

Yeah, everyone is trained out of their compression for other humans and themselves in a society like ours.

 

[duncan]

What do you mean by exertion, @duncan? Most people do pretty much equate it to effortful action.

It's how the likes of the NIH employ words like "effort" that concern me, not how we interpret them.

 

[JemPD]

This is interesting, because it's not like dementia either. I once experienced some of those symptoms due to a severe B12 deficiency. There's sometimes a comical quality when you look back on things you've done, misplaced, or misunderstood because of brain fog; with dementia, if you can remember the incidents at all, the nature and scale of the gaps is plain scary.

When we're talking about how to communicate care needs for very severely ill people in hospital, this is so risky an area that it might best be avoided. We know from Maeve's inquest that at least one person has already made assumptions about brain fog equalling lack of mental capacity, and I feel strongly that that can't be assumed.

Capacity in people with severe ME can't even be assessed with a test, because the instrument itself would cause lasting impairment. It would have to be assessed on the pattern over time, observed by someone skilled and experienced. Those skills probably only exist in family members, partners and home carers, and the opinions would likely be doubted because the individuals are 'unqualified'.

agreed.

And you know it IS interesting Kitty, because now i'm thinking about my cog difficulties in terms of mental capacity.... it NOT actually that i cant understand, its that the environment/manner of presentation amkes it impossible. And clearly i need to stop describing it as being unable to comprehend but rather when i at my worst in need certain accommodations to enable me to comprehend!

So for me at least (and i am not nearly as bad as very severe with feeding issues but am severe as classed by NICe & MEA), but for me the problem can be managed, to a degree, by slowing everything down to a ludicrously slow pace. And making sure i am lying flat, with zero sensory stimulus.
So its not really accurate to say i cant comprehend, full stop. Because actually the problem is the rate at which the info is coming.

for example... if carer wants to ask me if i want a drink she has to say "thirsty?"
& give me probably a full minute or 2 to understand what the word thirsty means.
Then repeat another word - "tea"? & then again give me at least a minute or 2 to work out what 'tea' is, & then if i shake my head slightly she waill then ask 'water?'.... and so it goes on.

She said its visible on my face - frowning in intentse concentration & confusion while i figure out what a word means, & then she sees me understand it & my eyes go wide with comprehension, & my face light up when she's said something i want & i work out what it means.

But if she were to say "are you thristy do you want a cup of tea?" i wouldnt understand... i might catch one word but the rest is gibberish. If i catch 'thristy' then all well & good, but if its 'cup' or 'want' then we've no hope.

Same with reading, if one word is presented at a time, in the same way i described, then i can understand - eventually. But if i try to read a sentence i cant manage to separate out one word from another - the visual field is too cluttered with other words. Also i cant hold onto the concept of one sentence while reading another, there is no working memory. So one thing has to be fully established before moving on to the next a little later.

None of it is possible if there is also sensory stimulus going on, so its impossible to understand the word question 'thirsty?', if there is any sound whatsoever.

Obviously this is only when in deep PEM crash, i am reading this thread & understanding, which is why people generally dont believe me when i talk about my cognitive difficulties. But I can go from this to that in space of 5 mins.

So its not actually a mental capacity issue, but a problem with the environment & the manner in which info is presented. Which would presumably be why they didnt understand why Maeve could make her own decisions but said she needed her mother to stay with her to communicate for her!

This phenomena can be seen at a lower level in me when i am well rested, whent i can either stand up for a couple of mins or understand whats being said. I simply cannot do both. But if i go lie down i can 'miraculously' understand again.

Same with sensory stimulus - its assumed to be about distraction, but it seems to me much more about not having enough 'gas' to fuel both processing the stimulus/standing up, AND thinking.

I dont know how that fits into the signalling thing, but i imagine it would.

 

[Kitty]

I would say that those who probably know the best what this is like are very old, bed bound persons. How the exertion needs several breaks regardless of what kind of exertion it is.

Not necessarily addressed to Lindberg, just a general question: Do we really understand this?

Obviously muscle loss/atrophy is a big factor, but it doesn't explain the effect on muscles they use all through the day. Or on their ability to chat to family, or "be doing" with having small children around.

Is there any reason to think the scenario is different to what's happening in ME/CFS?

 

[tornandfrayed]

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.

I do get "hard limits" when there is literally nothing. I'm on the floor and I can't move. Not only due to exertion - I can be in bed, unable to turn over.

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.

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.

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 the risk of overcomplicating, I think there are more variations. There's the Baseline Fatigue and Weakness, along with all the other symptoms. I think someone said on another thread, that we're misunderstood when we use "flare" or "crash" for PEM, because in other illnesses people are well or almost well outside of a flare/crash.

There's the Rapid Fatiguability - when I was more moderate, I would start out walking feeling like a normal person. Then I would get weaker and weaker, and feel like I was thigh deep in mud. And, of course, the cognitive equivalent.

Then there's the Hard Crash I describe above.

Then PEM, which may be of different kinds.

I know it's not what is meant by "signalling" in this discussion, but the messages we receive consciously is often that we're fine, we're strong, we can do a bit more, and as the years and decades pass we're still tricked by that and pay the price.

That's why pacing is so hard. When we're a little bit better, our inclination is to do more. It's not a just a human thing, it's an animal thing.

 

[Yann04]

I do get "hard limits" when there is literally nothing. I'm on the floor and I can't move. Not only due to exertion - I can be in bed, unable to turn over.

Oh yes I get that too, and I can faint. My point wasn’t that there aren’t no hard limits in ME, but that pacing does not use hard limits, and is not a hard limit in itself.

 

[Creekside]

How the exertion needs several breaks regardless of what kind of exertion it is.

I don't think Johnathan is arguing that there isn't a limit to how long we can maintain exertion; he's simply pointing out that we don't know why that occurs. For non-ME people, that mechanism may be more likely to involve chemical energy delivery and waste removal in the muscles. For others, it may involve blood flow limitations. For some other disorders, that cause may be neurological. I expect that even a tiny amount of the right chemical delivered to just a few specific neurons could cause a similar inability to make muscles do what we want.

At this point, we simply don't know which mechanism is involved with ME's symptoms. While we can't completely rule out mitochondrial dysfunction or blood delivery problems, there's been plenty of studies of those possibilities done which have failed to show convincing evidence. Neurological dysfunction is harder to do conclusive studies about, since it's hard to measure factors in living brains, and there's still so much that hasn't even been discovered yet. Are microglial tunneling nanotubes involved? Since they're a new discovery, there haven't been a lot of studies done on them, and I expect none on PWME. What other still-undiscovered neural functions might be involved?

 

[Lindberg]

I don't think Johnathan is arguing that there isn't a limit to how long we can maintain exertion; he's simply pointing out that we don't know why that occurs.

No one has claimed to know the root cause to ME or the exact biochemical reactions. But Jonathan expressed that he was interested in the variability of ability that occurs and especially why it happens in people with severe ME. In trying to understand he made the comparison with people refraining from further strain when in pain, both unconsciously and consciously. In his own words “partly through a completely involuntary block and partly through a sense of intolerability that prevents voluntary effort.”

My own take on this is while all of us certainly have experienced this from time to time, it’s probably not the same as to why variability occurs when you are in a severe state. When I am on a moderate level I have choices to make when symptoms occur. Do I keep on going? Do I pause? Do I keep standing up, lay down etcetera? My own experience from a severe state is that you don’t have those choices anymore. You, your soul and your mind, are stuck in a body that controls everything. When the body shuts down, it shuts down. Even if you desperately don’t want it to. After a while you may be able to look again or speak again. But it’s not like you had any voluntary choice of effort regarding this ability.