On fatigability and rationing as improved terminology over fatigue and pacing

[bobbler]

Not to me it doesn't. For me, the most disabling aspect of ME/CFS is PEM, but the thing that affects me negatively every single day is fatigue. The fact that fatigability means that I tire more quickly than someone else is, for me, a sideshow compared to everything else, and would be extremely difficult to differentiate from deconditioning, even if that was possible.

[And in case I'm misunderstood, no, I'm not saying that ME/CFS is caused by deconditioning, just that it is highly likely that I, and many others, are deconditioned due to the restrictions imposed on us by ME/CFS].

I agree if in the sense of it being vulnerable to the sophist bps claims where no one wants to even give a space for reply on the accusation ‘it’s deconditikning’ that it maybe is (I’m not sure tho)

But the ironic thing is that it’s the fatiguability areas eg arm that I can directly blame on rehab /use. As eg the arm thing followed a job (for 4yrs plus) where a common aspect was lifting 10kg + boxes in huge quantities for many days of the year among other things. Ie more arm use than 90% of other well people would ever have in their job - so nearly everyone would have it if you deconditioned arms to fatiguability from not doing more than that. and then was finished off and suddenly and obviously appeared when I’d had ‘going to the gym’ to do gentle things like eg 10 light weight arm exercises at a time . It started almost a week into that. And never went away. But the same happened again when I tried it again with another crashed years later and arm exercising I think just one session took them permanently even lower.

So I’m almost certain it’s caused when pwme are forced to (yes indirectly by putting us in the crap positions the lies put us in) exert specific areas ie probably what any ‘rehab’ would directly lead to/cause (rather than the improving the arms it destroys them pretty permanently).

And is a particularly dodgy move when the illness is 'live' (the closest point I would think that term 'flare' is useful for is there are points often before the bigger deterioration where eg that overwork vs threshold eventually 'busts' and it feels very 'illness-like' even though it is illness-like already). and is scarily likely to be the very point where people might be getting diagnosed as you stop being able to even scrape through at work and realise its bad and change is needed, scary in the sense that this has historically therefore been just when so many end up doing these worst things of trying to exercise or pace-up or just try and build up or do exercises on that aching or weak body part to try and 'improve it' or whatever

 

[bobbler]

I agree—my only caveat is that it implies you know how much of your meat ration you have left. And you know how much you'll get when you present your coupon to the butcher next week.

That may not be a fatal flaw, but it is in there somewhere.

I think you with the last few posts are putting your finger on the issue that this building ‘fatigue’ or whatever it is

Doesn’t look or feel as outsiders think

And is so hard that ‘newbies’ can means years into the illness because of different peoples situations as we mostly can’t control our lives to run an experiment from the twenty different angles we need but are thrust into a hostile world quickly when our deficiency and changed behaviour begins. So compared to normal people our lee way we are given in life goes down as people pick on us and observe us for ‘doing wrong’ intensely. We have demands others ignore eg ‘hidden labour’ with bureaucracy of sickness policies and getting GP appointments and tests being labour and time sucks. And those are just in attempts to ‘explain ourselves. WHat's on our plate goes 'up' instead of 'down' overall but those who want to keep that workload invisible think it is less etc. the effort of trying to make them see it is normally not worth trying

A well person is used to waking up ‘feeling tired’ one day and it either being from a heavy week/night/exercise session or ‘ooh maybe I’ve got a bug’. And the most they have to analyse it is if they go into work and get half way thru the work day and either can’t function or are half functioning and feel ill and it’s now a quiet day so they might as well go home and sleep it off. Or if there is a cause they are ‘gingerly’ and it gets better and eases off or they are glad to get home. It is ill vs 'not ill' and either tired and 'it might be the start of something' or not but they'll know when it comes.

They might big I am the 'I'm so busy' but by comparison for many the plug can be pulled with a 'we're sick' and that's it, unless maybe later on a GP call of effort is needed. They aren't managing 'what does my record look like' etc. (with both GP and work and others), and having to save it for 'the really bad days' (and is this one? or just 80%?). Everyone will actually still be there after their week of 'I'm seriously ill' and they won't starve during it, their teeth rot, the house dilapidate beyond quickly rectifiable once well.

They don’t have the being exhausted and ill but wide awake unable to sleep unless they get something really bad - like that day of flu or tonsilitis where the pain is so bad you can’t sleep yet. In the middle. For max a few days. And wonder if that's behaviour and not illness or in their mind. Or have to deal with the knowledge others will view it thru that lens and having to 'manage the best decision based on that (you can't teach stupid) issue'

They don’t have the think you feel on top of the world few hours where your symptoms go and know it half makes no sense unless you are the type who loads up on caffeine and fortitude and pushes thru ‘tired’ to wake your brain by doing stuff and getting the exercise and distraction by doing stuff going and somehow kid yourself that must be what it is. Because with the latter whilst you expect you’ll be tired when you get to the end of day and sleep well, you wouldn’t expect to feel like we do and then be stuck awake but in pain all night after and so on.

You also wouldn’t expect to not wake up the next day and when you do you aren’t awake but trapped in a can’t actually wake brain mode where you spend three hours telling your brain you’ve just got to move your arm etc to eventually get a drink or get to loo or get tv on loud to try using that to force brain to wake

It’s shin pain from walking on your legs pushing them thru. And eyeing up your headrest of office chair to lie the side of your face on at 4pm. And dreaming of lying down and bed when you get home not whatever normal people think of (I’ve never had it as I’ve been ill since young ). I’d need a ‘nap’ (several hours deep sleep) to enjoy something even at my wellest ‘after work’ .

And going to the pub for a few drinks after work is probably where it really shows itself to a newbie I’d imagine because that switch to relax just means the adrenaline is off at a time your body has been pushed beyond limits and wants to lie down where those around you must find it relaxing enjoyable time. I’m intrigued if anyone who’s done this pre and post getting me/cfs could shed light on this one for example.

I’d enjoy the few drinks with the same people even at the same time of day so much more on a day where I’ve been able to be ‘off’ and follow my body and if I’d slept, woken naturally and was awake and got there for 5pm then great. But even social occasions when not working where I HAD to be there at x time eg for a birthday could be a nightmare as I’d often not slept and had the dilemma of getting sleep to function but being 3hrs late or turn up putting a smile on a wreck.

So it both doesn’t look straightforward in how people expect fatigue and is complicated in how much we can concentrate on it or adapt what we have on our plate to our body’s condition.

 

[MinIreland]

Sure. But getting rid if fatigue is not the way forward. The solution, in my opinion, is to mention and explain both.

As long as you include PEM in the diagnostic criteria, you’ll avoid the false positive from e.g. just deconditioned people. Assuming they get PEM right, of course..

Sorry for the stupid question, but I don't understand what 'deconditioned people ' means. Could you please explain? I've seen the term multiple times but I just don't know what it means.

 

[Utsikt]

Sorry for the stupid question, but I don't understand what 'deconditioned people ' means. Could you please explain? I've seen the term multiple times but I just don't know what it means.

Sure - not a stupid question at all! Deconditioning means the decline in physical and mental capabilities due to inactivity. So essentially being unfit.

When you live with ME/CFS, you often have to limit your activity. That will eventually lead to all of the normal negative effects of inactivity, and it will affect very many measurements of the body. So when you’re doing studies, you need to control for activity level of the participants, otherwise you might end up with differences that are just due to one group being more unfit.

That is not to say that ME/CFS is caused by deconditioning or can be treated with doing more. It obviously isn’t.

You have the same problem with comparing sick people to healthy people. Being sick in general will affect lots of measurements that have little to do with the core of the disease mechanism(s) for that particular disease.

 

[rvallee]

Rationing was mentioned here recently and I like it as a replacement name for pacing.

I don’t like fatiguability as a replacement name for fatigue, because I think they are different concepts that need different names.

Not as a replacement for the concept, but rather as a more relevant term to define the illness.

Because fatigue isn't always present. I didn't have much fatigue for most of my early years, but I did have more fatigability than normal.

Fatigue is obviously a major symptom and aspect of the illness, but it's the most common symptom in all of health care, it can be misrepresented hundreds of ways, and is usually not what's limiting, because it's about how fatigued/weak/exhausted we are at any one point, but the fact that it can drop so easily and rapidly.

The kind of fatigability we see in ME/CFS is also not compatible with deconditioning, as we are not talking about going out for a jog but even minimal activities of daily living. Obviously that's something we find in frail people, but that's not the same thing as being deconditioned.

 

[rvallee]

I find I struggle to quite understand fatiguability on foggy days and I think there may be wider issues of comprehension and misinterpretations due to the word just looking so close to fatigue, when it means something distinct. I didn't even know of the term till I came here.

I define it as a rapid increase in fatigue, especially disproportionate from effort.

So it's about a change in symptoms, more than the symptoms themselves. It's what de/acceleration is to speed. Of course the symptoms themselves are very important, but the rapid shift is very different than how fatigue is understood in a clinical setting, especially the stuff that causes them confusion. They see fatigue as something that should be stable, and amenable to improve with training, which doesn't work for the idea of fatigability.

PEM covers the most disabling aspects of ME/CFS, but a lot of discussion here focuses on how not everything is PEM, so there's a whole missing space here for the concept that isn't some 'baseline', or stable over a duration of days, of fatigue, but also isn't PEM. There's this whole thing where we lose some function but it isn't PEM, it's mostly a rapid increase in fatigue. What those who get it wrong mislabel as "having to lie down".

Once I started noticing it, to me it's such a major aspect. I see it cognitively, sometimes I can think a bit more, but very rapidly exhaust it. Same with muscles, I can use them relatively normally for a short while, say the time it takes to do a 6 minute walking test, a sit-and-stand test, or a hand grip test, but they rapidly become unusable, as if drained of all energy.

There's also this idea of a broken battery, how its baseline charge is low but also how it recharges slowly, but it's missing that key aspect of how quickly it gets drained from even minimal effort.

 

[Utsikt]

Not as a replacement for the concept, but rather as a more relevant term to define the illness.

Because fatigue isn't always present. I didn't have much fatigue for most of my early years, but I did have more fatigability than normal.

And some will say that fatigue is more impactful in their life. Both should be included, and maybe as an and/or and not a hard requirement for extreme fatigue.

 

[rvallee]

And some will say that fatigue is more impactful in their life. Both should be included, and maybe as an and/or and not a hard requirement for extreme fatigue.

Of course. It's not about not using fatigue, but rather how much confusion about the condition the term means when it's made to be the defining feature of the illness, but also with how it conflicts with medical beliefs about how to deal with fatigue. Fatigue is just too common in health care, it doesn't light up anything in itself. To me the fatigue is always over-bearing, but what's limiting me more than anything is that if I spend any effort, it just keeps getting worse, and very quickly.

With a baseline of fatigue, it may make some sense to be more active. Not much, the evidence is frankly lousy, but it doesn't conflict with reality the same way trying to exercise out of fatigability, which is a rapid increase in fatigue. If exertion brings a rapid increase in fatigue, then it makes no sense to think of it as a treatment.

Although we are dealing with, frankly, extremist ideologues, who can poo-poo all concerns about PEM, to the point where it will make sense to many that you can exert you way out of post-exertional malaise, but that's just because they have no concept of what PEM is, they think of it as some form of fatigue, or whatever. I'm just not concerned with getting them to understand anything, though, it's not that they don't understand the concepts, it's they reject them, so their opinions are frankly just irrelevant.

 

[wabi-sabi]

While I am all for precision of terms, I don't think changing pacing to rationing adds anything. It's a hard concept to grasp, harder to do. Lately I have been thinking of this musically and trying to think of changing rhythms and rests in music. But it's just a different mental game to explain the same thing. We can all use our own analogies to find ways that help us pace, but having one official term or analogy I don't think leads to greater understanding. When I can describe an exact pathophysiology for what causes PEM, then I think the words we use will matter more and getting our terms precisely and accurately descriptive.

On fatigue vs fatigability, I definitely have both (as well as PEM, of course) and the are both hard to deal with in their own way. I find it useful to differentiate the symptoms and causes and what works to alleviate each. I'd guess we all have our own levels of fatigue vs fatigability and it is useful to be clear which we are experiencing or talking about. But again, I really want to know the underlying biology that's driving all this. Everything else just strikes me as energy wasted on word games right now.

What I really wonder, is whether other diseases experience PEM. I've heard people say that PEM is pathognomic to ME/CFS and I've also heard people say that POTS or EDS can cause PEM. It's really hard for me to tell, based on the way people describe symptoms, which speaks to the basic failure of words to describe bodily sensations. But maybe I just can't think straight today...

 

[Utsikt]

Of course. It's not about not using fatigue, but rather how much confusion about the condition the term means when it's made to be the defining feature of the illness, but also with how it conflicts with medical beliefs about how to deal with fatigue. Fatigue is just too common in health care, it doesn't light up anything in itself.

As is fatigability, especially in deconditioned people. Neither concepts will have any impact on the healthcare system.

To me the fatigue is always over-bearing, but what's limiting me more than anything is that if I spend any effort, it just keeps getting worse, and very quickly.

You’re not alone, but your experience is not universal and some have the complete opposite experience.

You suggested to replace fatigue with fatigability. I suggest using both in an and/or criteria to accommodate both sides.

 

[StellariaGraminea]

Right now I think we are limited by this language, more than most understand, and one way out of it is to take control of the discussion by improving on the basics of how we talk about it.

I agree it's very worthwhile discussing the language we use around this. Also some have suggested leaving it for scientific or health personnel to give us words for. I disagree with that. It hasn't gone down well previously and whatever the underlying biology is found to be doesn't necessarily mean it will translate well to describing lived experiences. Either way our experiences are our experiences and we can describe them now.

Misunderstood and variously interpreted words like "pacing" are leading to confusion and miscommunication right now and that can be changed or improved upon. I like the idea of a glossary of terms like: rationing, fatigue, fatiguability etc. that describe aspects of experience. There are probably more words to add to that.

Sure. But getting rid if fatigue is not the way forward. The solution, in my opinion, is to mention and explain both.

Agree fatigue and fatiguability are different concepts, need both. I've found it useful to pick up the term "fatiguability" reading here. I'd recognised it in myself, but hadn't really used a word to describe it, but as @rvallee points out it's a very specific aspect of our experience that is not generally pinpointed or acknowledged in generic discussions of "fatigue". I find it really helpful & even just having the term helps me bring an aspect of my experience into focus that I hadn't considered a lot before... a reason why reflecting on the language we use is so valuable.

 

[bobbler]

Sorry for the stupid question, but I don't understand what 'deconditioned people ' means. Could you please explain? I've seen the term multiple times but I just don't know what it means.

it is a very pertinent point because ...

For things like the 2-day CPET it has been useful to have a group that have generally sedentary lifestyles to compare those who have an illness like ME/CFS to (who actually might not have such a sedentary lifestyle because life isn't kind). The reason being to see what is and isn't 'due to conditioning associated with lifestyle' whatever that means. So the finding those just sedentary or 'deconditioned' got better on the second day vs pwme getting worse was important.

Having those controls when comparing function is important to pre-bunk that accusation when pwme are worse but also pin-point what is likely only 'me/cfs specific' attribution-wise even if (is it sensitivity or specificity) really at an individual level if you could do tests the day before someone got me/cfs, maintain the same lifestyle and then test them then actually more of those things/that function loss really is just illness.


.. However, that's the generic phrase you can tell goes on in others' heads eg HCPs but they aren't necessarily really thinking of anything specific science-wise just believing in the idea you are tired/unable because you need to do more. Some of it is as fallacial as people who tell themselves 'they feel they have more energy since they started doing their couch to 5km' or whatever thing they got into as their new regime. And so 'those with fatigue' therefore must 'feel like they did before' or some scaled version of it must exist, even though even with their own barely getting off their backside for those years before they still could do what they wanted or needed to.

So then there must be a cognitive dissonance where they confuse their 'but I didn't always feel like it, (whereas now I can't wait to get to the gym)' with fatigue. Because our fatigue can't be like their good fatigue after they did a training session. And it isn't of course, it's like their good fatigue would be if they did 45 without a break when they had flu, throughout the night and day for a few days straight.

it also these days in the UK plays into the 'pyjama paralysis' edict that I think goes through all HCPs like a truism and is based on initiatives that have literally generalised the idea from elderly people apparently going into hospital for an acute thing and 'not being able to go home because they lost all their strength due to having been in bed and not doing their usual stuff for too long'

they are also trained to look for/at muscle wastage and assume it is due to not using it. Which is another point I think needs to not be assumed as always true as my worst areas are the ones used the most and that got hammered the most. My calves disappeared when car parks got moved further away enforcing twice daily walks on already sore muscles, not 'unused ones', but particularly cruel as it was adding it on at the end of the day when they were already definitely exhausted. But their mindset is that it must only hurt because what you did before was too little. Well I was an athlete before. And it didn't get worse because I was allowed to lie in my bed. I'm pretty sure my legs aren't worse for lying in my bed more, but those who want to believe it wouldn't look at 'worse before' photos even if you had them.

Their examples for that are people whose one broken leg was in a cast and less used in the old days (I haven't seen the demo that all who now don't have this have perfectly even legs after breaking one btw), older people who will lose muscle each year, younger people who have significant injuries/illnesses like stroke or big accidents and are under rehab wards after lots of operations or treatment. Obviously athletes who stop training don't have the extent of what they had before but I don't know if that all counts as 'wastage'? Yet deconditioning I guess is a broad term because someone who used to win marathons could be 'out of condition' for that norm but still above normal and the term 'deconditioned' for that becomes Schroedinger's cat.

 

[bobbler]

it is a very pertinent point because that's the generic phrase you can tell goes on in others' heads eg HCPs but they aren't necessarily really thinking of anything specific science-wise just believing in the idea you are tired/unable because you need to do more. Some of it is as fallacial as people who tell themselves 'they feel they have more energy since they started doing their couch to 5km' or whatever thing they got into as their new regime. And so 'those with fatigue' therefore must 'feel like they did before' or some scaled version of it must exist, even though even with their own barely getting off their backside for those years before they still could do what they wanted or needed to.

So then there must be a cognitive dissonance where they confuse their 'but I didn't always feel like it, (whereas now I can't wait to get to the gym)' with fatigue. Because our fatigue can't be like their good fatigue after they did a training session. And it isn't of course, it's like their good fatigue would be if they did 45 without a break when they had flu, throughout the night and day for a few days straight.

it also these days in the UK plays into the 'pyjama paralysis' edict that I think goes through all HCPs like a truism and is based on initiatives that have literally generalised the idea from elderly people apparently going into hospital for an acute thing and 'not being able to go home because they lost all their strength due to having been in bed and not doing their usual stuff for too long'

they are also trained to look for/at muscle wastage and assume it is due to not using it. Which is another point I think needs to not be assumed as always true as my worst areas are the ones used the most and that got hammered the most. My calves disappeared when car parks got moved further away enforcing twice daily walks on already sore muscles, not 'unused ones', but particularly cruel as it was adding it on at the end of the day when they were already definitely exhausted. But their mindset is that it must only hurt because what you did before was too little. Well I was an athlete before. And it didn't get worse because I was allowed to lie in my bed. I'm pretty sure my legs aren't worse for lying in my bed more, but those who want to believe it wouldn't look at 'worse before' photos even if you had them.

Their examples for that are people whose one broken leg was in a cast and less used in the old days (I haven't seen the demo that all who now don't have this have perfectly even legs after breaking one btw), older people who will lose muscle each year, younger people who have significant injuries/illnesses like stroke or big accidents and are under rehab wards after lots of operations or treatment. Obviously athletes who stop training don't have the extent of what they had before but I don't know if that all counts as 'wastage'? Yet deconditioning I guess is a broad term because someone who used to win marathons could be 'out of condition' for that norm but still above normal and the term 'deconditioned' for that becomes Schroedinger's cat.

Plus I think even this original (pyjama paralysis initiative) example is a manipulation/twisting of what actually happened (cognitive dissonance/politics) under the phenomenon that was called 'bed blocking' for many, many years and then got slowly re-branded to this.

because it is hiding a different issue/issues there which was that when someone got a fracture or chest infection they both ending up with another thing that could have been the straw breaking the camels back and/or highlighted a situation at home that was already there in them struggling without support in a home that was fine when they were 60.

but because someone has to check it is safe for them to be discharged to, put in place those measures or find somewhere in the interim (between hospital and care home ie) or longer, all of that was taking ages.

So all these HCPs are required to sing the hymn that hospitals now forcing all patients out of bed to sit in a chair and walking them up the ward x times a day is saving the elderly and the NHS

What is really going on is that they are getting them out of hospital before they end up bed-blocking for months on end. And probably the above 'testing them' from day one - or as soon as they've come round from the op to fix the broken hip - just means that the triaging is the priority so those who aren't going to have anyone at home get an alternative that isn't them being left in hospital for those months, and those who fell because they weren't really OK anyway aren't the responsibility of the ward they landed on to beg for 'a bed elsewhere' but there is some intervening initiative.

I don't know the details on how many there were in the past who went in independent for a chest infection and could have been out in a week (care or no care) but found being in bed for a week meant 'their strenght deteriorated from not doing their daily routine' and led to them being there for months and never returning home. Rather than other factors meaning they didn't get sorted to be home within a week with the adjustments needed. ie it being the 'not getting out of bed for a week' instead of the 'living in a third floor flat without a lift' that meant the person with the broken leg couldn't get home.

It is of course the same 'drop-outs' and who gets discounted issue we see with all the ME/CFS stuff. And of course those well enough to do these things should be allowed and supported to do what they could before as sensibly as thye can during their stay, why were they being stuck in nighties in bed for weeks on end having been cleaning the house fine the week before.

BUt it generalised in the minds of most to think that anyone of any age if they sat in bed for a fortnight would without illness lose all of their function. And of course the term 'fatigue' probably got shoved in there to bridge the cognitive dissonance gap.

And historical studies of soldiers who were made to do an experiment of lying flat and not moving for xmonths were brought out as the other end as 'proof' - overlooking that the changes found in their 'fitness' whilst still lying in bed at the end of this went when they just were allowed to sit up and get out of bed ie weren't 'permanent' and in need of rehab to 'reverse'.

And someone with flu who ends up 'in bed' for a fortnight is being gingerly about their return to work and gym mainly because they still aren't fully past the flu, not that 'they haven't rehabbed from the lying down'. Professional athlete's running times might be a bit slower for 2 weeks off training and the flu + change in diet upsetting their body's perfect balance, or might actually if its out of their system find they weirdly run faster because the break actually sometimes means that - there are events where people will have a training-break in the lead-up to competition because of this, albeit that isn't in bed of course.

 

[Kitty]

OK, So kind of rapid exhaustion?

Yep. Really rapid too.

So I can stand up and put one foot in front of the other to walk. So far, so good. But I can't keep doing it. I walk about 10 or 15 metres and that's it—my capacity for walking is gone until I've had a good rest.

That's highly abnormal for someone with fully functioning legs, even if they're deconditioned. The same thing applies to every activity, from hair washing (arms give up the ghost halfway through the first shampoo) to speaking (voice goes hoarse because when the muscles go weak, you're straining your throat).

 

[MrMagoo]

It seems to me that the term "fatigue" may be problematic at least for a subgroup of patients. In my case it is rather muscle fatigability, muscle weakness and very poor stamina than "fatigue".

I have fatigue and fatiguability, but I agree with your point “stamina” which is how I usually explain limitations to others “I wouldn’t have the stamina to chop and cook carrots/I don’t have the stamina to go outside every day” etc

 

[bobbler]

Also if you said to pre-ME me,
“activity rationing”, I immediately understand. “activity pacing” sounds more like finding an efficient way to take breaks between activities while maximising the amount of activities.

yes and like someone might say 'I'm rationing myself to 4 coffees a day' for whatever reason (budget, caffeine intake overall or in relation to sleep) vs merely pacing themselves on the coffee drinking rate: "whoa nelly slow down that's your fourth espresso so far in this meeting and we are only 45mins in" well it all comes from a different place and emphasis a sort of burn-outy can't control your own calendar type mindset, unless it is said because there was only one coffee urn delivered and that person is concerned noone else is getting any.

And the other catch. Like your boss pretending that them rearranging and micro-managing your tasks somehow makes them fit into the time given ... because they slotted it in there with '2hrs' against it. So it now has a 30min break after it (instead of 2.5hrs to do it). Rather than that actually making the same task that doesn't change just more intense and is doing a sales trick. Or of course it could be for those it works for and did want to do it that way that they actually had less work and did have 30min breaks and a serene pace where they didn't overdo it.

But the point is that the 'pacing part' becomes an excuse to pretend the amount having to get done/on the plate is somehow irrelevant and reframable as if it 'always fits' or it not fitting doesn't matter. It's all very CBT oversimplify heebeegeebee mindset. Rather than allowing someone to be honest about whats on their plate, what they have as their ration and prioritise - then flag the mis-fit if it exists.

More useful/grown-up to be able to discuss that you don't have the energy to brush your teeth every day and do other things that are as high priority, than talk about the routine and timing of it all (and I think certain beliefs think that routine and timing is what makes the magic money tree is what is really going on).

 

[bobbler]

I don't disagree in so far as I don't find "chronic fatigue" descriptive at all of my lived experience and loathe what it means and how it is used to stigmatised and belittle me here in the UK.

For me it is a problem mustering up the energy in the first place, then pem and pain (and risk of permanent deterioration) if I do so, plus a whole bunch of immune system and neurological symptoms.

That said, I do sometimes talk of "exhaustion" meaning something beyond fatigue and out the other side again, to try to sum all of that up, which probably isn't even accurate either. I also tend to just talk about a loss of function. It's so hard to find the right language isn't it.

I find I struggle to quite understand fatiguability on foggy days and I think there may be wider issues of comprehension and misinterpretations due to the word just looking so close to fatigue, when it means something distinct. I didn't even know of the term till I came here.

Rationing makes total sense. I've seen energy conservation used too. Either of those works better. I definitely didn't get what I was meant to do when I was taught pacing. I was sort of doing the same (or even more) with breaks interspersed. Which was pretty disastrous long term for me.

But I worry whatever new terms we conjured up it would be vulnerable to "cultural appropriation" for want of a better expression by BPS and rehab proponents.

I feel we just really need the science to lead us to a new name now. (I appreciate not everyone will agree)

I have a feeling they'll find a way to ba****ise rationing into 'ration-expanding' or some silly rotation idea that it will magically make more rations be able to be tackled at 90% or something, or will it be 'removing the binds that ration'?

Ahh well I've only spent a few mins on guessing so far and I'm humble enough to realise I'd be arrogant to think I'd guess in that what those who will have teams on the case gaming it out will use as their sophist strategy on that. Thye might just take the mick out of the term and use it as a pejorative inferring it's one of our delusions etc. Need to be 'coached' to realise we are less rationed than we think etc.

Cos at least right now the word starts as inferring 'hard-limit'. Which the 'reality can be what you decide to think it is' gang won't like on principle of them actually being really fussy on what others categorise as 'the things you can't change' when their life would be easier if they magically moved category.

I'd be really happy if these models and terms also left a lot of room to hammer home the point that for probably most of us it isn't going to be about being able to have some even ration each day because the highest exertion tasks (which will be high priorities just by virtue of still being in there despite that) will likely not be splittable and require the radical rest etc.

Oh for the time someone just 'got' that obvs it isn't just a case of 'showering the night before so you aren't doing it on the day of the appointment' and how little their imagined expertise they try and helpfully come up with ingeniously in the space of 10mins of listening can offer someone who is just as intelligent and has been living the conundrums and invidious choices daily for decades, but thanks for your suggestions (and me having to say I hadn't thought of that to compliment you when really I'm thinking 'yeah there are 20 reasons why that's silly')

 

[Trish]

I haven't managed to read all the posts on this thread.

My view is we need both the terms fatigue and fatigability. They are different phenomena.

I like the term rationing instead of pacing.

Pacing carries the baggage of its prior use in other conditions where exertion is not harmful as they don't have PEM. Therapists trained to treat pain and other symptoms, and rehab after injury, with pacing that includes the whole package of boom and bust, baselines, gradually increasing activity seem unable or unwilling to recognise that PEM completely changes the picture.

To many therapists (physio, OT, psych), pacing = pacing-up = GET, regardless of condition being treated.

 

[Mij]

Because fatigue isn't always present. I didn't have much fatigue for most of my early years, but I did have more fatigability than normal.

Fatigue was not a defining symptom for me either, and the ME doctor didn't feel it was an important part of my diagnosis towards my disability application. Loss of stamina. For me, the fatigue came years later after I developed OI.

 

[MeSci]

Also if you said to pre-ME me,
“activity rationing”, I immediately understand. “activity pacing” sounds more like finding an efficient way to take breaks between activities while maximising the amount of activities.

Yes - unlike most people here (I've only read a few replies due to time/energy constraints) I don't really favour the word 'rationing' as it seem to mean limiting everything against one's wishes - think wartime rationing. But adding the word 'activity' makes it more comprehensible.