Tiredness Vs Fatigue - Are they being confused, and is that the big problem?

[Barry53]

I agree I think the issue here seems to be one of feedback. I think it's been proven that the mitochondria are fully functional in people with CFS/ME once the mysterious blocking agent is removed?

If the mitochondria have switched to producing ATP from fatty acid and amino acid etc then does this mean that the muscles glycogen stores are also defunct? It's probably not an either or thing I'm guessing more an efficiency variance?

When glycogen stores are depleted in normal people they get fatigued, rest and then recover once they lay down more glycogen from the CHO in their diet up until a glycogen saturation point. This I belive has a feedback loop to insulin release etc. When fully topped up they can resume their activity and the fatigue goes away

In our case the glycogen stores are presumably already mostly topped up since we haven't used them we just can't keep up with just fatty acid and amino acids we've got shunting around. hence there must be a shut down mechanism/feedback signal to encourage us to rest rather than start digesting muscle and fat tissue for energy ( starvation). I think with the amount of fat I've laid down that would be a long time, but the signal is quite persuasive.

This would explain why PEM can occur after large burst of activity (aerobic or sudden heavy lifting etc) or equally if you keep on going for longer than your body can supply.

I'm not sure if this gels with what's been said. It does make me wonder whether the cell danger response also causes the ongoing problems and that slowly other systems start getting confused as it goes on too long (endocrine, circulatory, digestion).

Sorry this is a bit off topic and a bit rambley with a lot of assumptions....but it would be interesting to have a marker for glycogen depletion fatigue vs what we have if that is any different.

Thanks. I don't have the knowledge to understand more than every other word you write, but it sounds good to me!

 

[Aurator]

I strongly believe the opposite - I don't think it is linguistic at all.

Right. And where do "weary", "drained', "shattered", "exhausted", "hammered", "knackered" et al. fit in to your allegedly scientific scheme of things?

 

[arewenearlythereyet]

Thanks. I don't have the knowledge to understand more than every other word you write, but it sounds good to me!

I get that a lot....sorry, once I open the ramble gate I can go on for ages

 

[Apple]

My thought is that the PEM term captures something - the 'malaise' word implies an unpleasant feeling, or at least a negative feeling. That seems to me the crux of the fatigue of ME/CFS. No that I am no longer 25 I find I can mow my lawn with my preferred manual push mower for about fifteen minutes at a time and am then 'fatigued'. I am not tired but I need a rest. I can do more mowing after a while. I think this is pretty much the sort of sense of fatigue that one would associated with an army camp - in which case it might be brought on by four hours hiking with an eighty pound backpack. After a break for food a good soldier can then do another four hours.

That sort of 'normal' fatigue clearly still does not capture the symptom of ME/CFS but I suspect it is much closer than sleepiness or tiredness.

That is a perfect example of normal fatigue that everyone feels. When I was at school, we had to run cross country. I was terrible at sport, had no stamina, used to complain the entire time and came pretty much last but after 20 minutes of stopping I felt fine and could have done it all over again. Wouldn't have, but could have.

You are correct that it still doesn't capture what ME/CFS feels like. I never felt like I do now when I was healthy. Not once. Which is why I think people don't take us seriously. Everyone gets tired, everyone gets fatigued, everyone is exhausted at some point. It's not even close to the poisoned feeling that I feel now as a ME sufferer.

Throw in a hangover and flu or two combined with 3 hours of sleep and that garden lawn being 3 miles long and you get a little more of an idea. Just a little.

 

[Hilary]

@Barry53 @Aurator I'm inclined to think this is a question of semantics but that it's a question of science as well - you have to pick the correct words to use but, in a scientific context, you have to be clear about how those words are defined and words like tiredness and fatigue are thrown around with abandon (being tired=being terribly busy=some weird sort of status symbol) and mean different things to different people. Typing this really rams it home into my frazzled brain just how inadequate a term 'chronic fatigue syndrome' is..

Clarity and agreed definitions seem especially important with ME, since the whole thing is currently bedevilled by a lack of consistent diagnostic criteria, (never mind the absence of a biomarker.) I'm sure ME is both under-diagnosed and over-diagnosed for all sorts of reasons, but I can't help thinking this lack of clear, consistently applied criteria is fundamental. How can you get the diagnosis right when it's not clear what is being diagnosed? And of course the whole picture is muddied by the existence of different sub-types plus all those people who are given the ME/CFS label but in fact have another condition altogether and also the manipulation of facts in the service of vested interests..........

I certainly agree that the 'fatigue' that comes with ME is very different from normal tiredness - and PEM is in another league again. I'm still faintly astonished when people say something along the lines of 'I get really tired too - I wonder if I've got ME?' Fatigue seems such an inadequate word in the face of such a devastating condition.

Excuse my rambling - I'm no scientist - but as an erstwhile lawyer, I do take a strong interest in how things are expressed, definitions, avoidance of ambiguity etc..

 

[Barry53]

Right. And where do "weary", "drained', "shattered", "exhausted", "hammered", "knackered" et al. fit in to your allegedly scientific scheme of things?

As I pointed out originally, I do not have the knowledge to make any such claim of scientific validity, which is why I am asking the thoughts and opinions of others. And you disagree with my inclinations, which is fine. Just because all manner of other descriptions fit on a spectrum (or perhaps more than one spectrum), and are immensely subjective descriptions themselves, does not automatically invalidate what I am postulating. And no, I wouldn't have a clue how such descriptions might fit, and it would be absurd of me to suggest I did know. Just because someone might ask a sensible question, does not mean they should only ask if they already know the answer.

 

[Aurator]

Sorry, Barry, if I was curt.

I agree that we can experience different kinds and/or degrees of whatever that sensation is, or those sensations are, that is/are typically put under the umbrella of tiredness/fatigue. I just don't think the norms of English usage currently permit us to arrive at a consensus on how tiredness and fatigue should be disambiguated. Possibly it would be useful if we used the words less interchangeably than they currently are, but until we do, I think we're stuck in practice with a certain vagueness, however unsatisfactory you may find this.

 

[Sushi]

Again to be clear, I am not medically qualified, so what I say here is just my own engineer-oriented perceptions.

My guess is that when you say you feel tired, what you are actually feeling is completely fatigued ... your body has run out of usable energy, and nothing but nothing can get your body through that until you achieve some kind of energy recovery, small though that may end up being. And maybe your issues are compounded by the fact your fatigue is not doing what it would do in a healthy person, and is not triggering you to feel tired. So you would be totally exhausted (i.e. usable energy all gone), but unable to react in a way that achieves energy recovery.

Yes, I agree with all that you have said, but as others have mentioned, some of us just use words differently. When I say "tired" in a ME/CFS forum, I assume that everyone will know that it means what you have stated above--not normal-world tired. For instance, when I am really "tired," (or "fatigued") I am unable to sleep without at least double sleep medication. That is because of the common "wired and tired" symptom that many of us have due to exhaustion. Since I live with exhaustion daily (as do most others here), I assume that when I refer to "tiredness" here, people know what I mean. So to me, it is semantics here on the forum, but outside of it, yes, I can see that they need to be distinguished.

 

[Snowdrop]

I think that it is worth making the attempt to try and find the appropriate term that describes what we experience.

For me the term fatigue has been ruined by it's now infamous use by the medical industry. And it's a big part of medically unexplained symptoms.

While it's use here on PR and that of the term tired is well understood by us as our own experience and doesn't need translating I think that for purposes of educating the public and translating the actual experience to the the medical profession that it would be good to agree on a term and lobby for it.

Exhaustion doesn't even cover it. Since healthy people can get exhausted too. Malaise seems more accurate but tends to sound like a lack of motivation possibly -- a kind of ennui.

Enervation seems to be a term that doesn't have baggage but comes close to describing the energy deficit experienced in ME.

 

[Barry53]

For me (bearing in mind it is my wife who has ME not me), as I said in my post I linked to at the start, I went through a phase in my life where I was abnormally sleepy and tired for some years, but not at all fatigued. Yet I fear a lot of similar people may get mis-diagnosed as having ME, and then apparently recover from it, as I explained in that post.

 

[Snowdrop]

Agree, misdiagnosis is also an important consideration. Creating precision there could have some important implications for any clinical research work in ME.

I admit to having a bee in my bonnet about the fatigue term.
With the suffering of ME we deserve better.

 

[Barry53]

Sorry, Barry, if I was curt.

No worries

 

[arewenearlythereyet]

Agree, misdiagnosis is also an important consideration. Creating precision there could have some important implications for any clinical research work in ME.

I admit to having a bee in my bonnet about the fatigue term.
With the suffering of ME we deserve better.

If you say "fatigue" round here or even worse "chronic fatigue" it's almost like lighting the touch paper to an incendiary device. I find the following words have a similar effect:

Simon
Esther
PIP
Myhill
MUS

I always loved playing with fire as a kid.

I hate ME as a term almost as much as CFS. A name shouldn't mean much but in this case it's been so abused I think a name change is in order once they have diagnostics sorted out.

 

[slysaint]

I hate ME as a term almost as much as CFS. A name shouldn't mean much but in this case it's been so abused I think a name change is in order once they have diagnostics sorted out.

As far as names go I think that rather than go for a 'descriptive' one (CFS, CFIDS, SEID etc) which they seem to get hung up on, a more 'abstract' one would be far better. Acronyms of possible causes/symptoms invariably can get misused and changed in translation. And names derived from greek/latin, although they sound more scientific, can be a bit of a mouthful.
If it can be proved, my vote at the moment would be for Dauer's...........(of course the diagnostic criteria are still a problem).

I think that it is worth making the attempt to try and find the appropriate term that describes what we experience.

I tried something like that a while ago:
http://forums.phoenixrising.me/inde...y-deficiency-better-than-using-fatigue.48302/
http://forums.phoenixrising.me/index.php?threads/me-symptoms-better-names-terminology.45781/

It's probably a topic not too many of us have given a lot of thought to and therefore we don't have ready answers. We can be a slow bunch when it comes to thinking things through. I might pipe in when I have had a chance to give it some thought.

 

[valentinelynx]

You raise a good question. But I think you expect too much of medicine in general. As far as I know, there is no accepted "medical" definition of tiredness vs. fatigue. It would make a good topic for research, however.

 

[Barry53]

You raise a good question. But I think you expect too much of medicine in general. As far as I know, there is no accepted "medical" definition of tiredness vs. fatigue. It would make a good topic for research, however.

It would wouldn't it .

Whatever they are called (could be Fred and Ginger for all it matters), the key point is whether feeling the need to rest/sleep is being confused with the inability to utilise/apply energy. Two different things that, because they so typically coincide in healthy people, are often not recognised as being different.

In a healthy person the two things are so intertwined it can be impossible to perceive their distinction - a healthy need to sleep invariably being driven by a healthy depletion of energy. True, time of day invariably forms part of the need to sleep, but that typically coincides also with healthily depleted energy availability. I fear there are two distinct mechanisms being innocently conflated; in healthy people they so typically coincide, that they can seem like one and the same thing. But for people whose poor health is rooted in problems with these mechanisms, that confusion maybe then confounds efforts to unravel what is going on.

This sort of confusion occurs all the time in real life, and leads to the inevitable "can't see the wood for the trees" syndrome.

 

[Barry53]

When talking to my wife earlier she said, yes she can still remember what it is like to feel tired, but mostly she feels utterly drained, but often cannot sleep. And she said that she only really feels tired these days if she gets a bad virus. Without any prompting by me, she reckons that her ME is fatigue but not tiredness.

A further clarification of my wife's explanation here, because I realised it confused me. When saying she can still remember feeling tired, what I misunderstood, and therefore misinformed here, is that she can still remember what it is like to feel normally/healthily tired. Because these days as well as times when she is shattered but cannot sleep, there are other times where she cannot stay awake. But she always feels ill and immensely heavy either way. To me this means she always has the severe fatigue issue, though not always provoking sleep. Whereas for me it was a weird tiredness, needing-to-sleep issue without the fatigue.

 

[slysaint]

I found this on PEM in CFS from Jennie Spotila:
https://dl.dropboxusercontent.com/u/57025850/pem-series.pdf

 

[rosie26]

There is also a weakness that comes with ME that probably gets called tiredness or fatigue sometimes, just to add more to the mixture. I experience this weakness in severe ME and during severe bouts of ME. I think it surpasses the fatigue/tiredness part of the illness when it comes to severity. The weakness is an even worse level - it will strictly make you bedridden. It always turns up in severe ME for me.

 

[Keela Too]

To me "tired" and "fatigued" are words that really mean pretty much the same thing.

In essence CFS could equally have been named CTS (chronic tiredness syndrome) because that is precisely why Chronic Fatigue Syndrome was issued as a name. It was surely always intended that the name belittle the symptoms and deny any disease process.

Trying to retrospectively dress up the word "fatigue" to mean something other than "tired" will not change the fact that an attempt was made to discredit our illness by inappropriately naming it.

I think ME patients don't get true tiredness. In my experience we are either
- pacing well, doing very very little but not necessarily feeling "tired",
or
- we have done more than our bodies could manage and we are entering a meltdown of symptoms rather like 'flu heaped on hangover, along with migraine and accompanying sensory assaults.

Let's not make the word "fatigue" anything other than what it is: a synonym for tiredness.