PEM discussion thread

I've been wondering about that. Even in the context of ME/CFS, if you broaden out "PEM" beyond a certain point it becomes synonymous with "ME/CFS". It encompasses the whole thing, or nearly all of it.

I probably won't make more comment on the leaflet, as it's looking good already and outside this forum I never use the term PEM anyway. Much better for feedback to come from people who do find it helpful, and want to clarify how they understand and use it.

 

@Kitty I was thinking yesterday that PEM terms are like an advanced education. Those of us who have experience it know the experience of the types but it can be so difficult for others and newly sick to grasp.

 

I agree that PESE and PEM are being used synonymously and that we're stuck with that

PEM, and now PESE, have always been described as being able to have either immediate or delayed onset. With our current knowledge that's probably the best we can do

But there's also long been debate about what constitutes "immediate onset PEM", i.e. what should count as PEM and what should be treated as something potentially different, at least until further evidence. There are many unanswered - and currently unanswerable questions - like whether rapid fatiguability by itself counts as a type of PEM, or whether symptoms limited to immediate onset fatigue/pain/muscle weakness should count as PEM. Some people do treat them as PEM and some don't and that's confusing

To add to the confusion, since Covid there has been more broadening of the definition of PEM where pretty much any symptom after exertion can be called PEM. I've seen people call their temporary breathlessness after climbing a flight of stairs post-Covid (no other symptoms) for PEM. There's a risk the term PEM gets so watered down that soon 'everyone gets PEM', similar to how we get told 'everyone gets tired'

It's complicated and I don't know what the best terminology is but I think for now we need to hold two balls up in the air simultaneously and be clear about which ball we're talking about at any given time. One the one hand we want to describe the complete post-exertional experience and on the other hand we want to note the particular features that make PEM a recognisably distinctive abnormal response to exertion

Actually, make that 3 balls. We also need to be clear about the uncertainty in all of this. While some features like the delayed onset strongly point to PEM as we've historically have understood it, and while we know that not every single symptom experienced after exertion is PEM, there are also many symptoms where we don't know at all where they fit

As easy as nailing jelly to a wall

 

I thought i was going through & saving multi quoes, but i lost it all apart from this one of Ravn's & am now too ill now to make any sense going back up thread to get quotes & things.

but I wanted to say that I am in full & enthusiasticagreement with evything @Kitty said in previous few pages re the difference.

and this

But it all very well my agreeing, but i havent a clue what to do about it
Like Ravn says its as easy as nailing jelly to the wall!

 

I think the lack of vocab and clarity doesn’t help actually

but yes it is a big job to think through due to the experience involved and thinking to remember across thise experiences

I agree with @Kitty that breaking these down and , particularly if we can have ‘does what it says on the tin’ terms (and get rid of the mental health originated terms , some of which are misleads anyway - like boom and bust rather than push-crash, relapse needs refining only to of someone goes back to where they were etc) , will make it easier for people newer to the illness to describe their own pattern and what does and doesn’t apply to them / is slightly different for them . Rather than making it harder.

we’ve been made impotent in even reporting our condition by the bps BACME terms that are inaccurate getting subbed for what we do Say normally even very early on - I remember noting the crashing out and people wording that back as fatigue which it wasn’t . So I assumed I didn’t have it, because I didn’t - I didn’t have the cfs they were thinking of and believing in. Me and me/cfs just as told not to be acknowledged and to instead be gaslighted to this totally different thing. We have a right to shake of these terms designed to invalidate snd mislead professionals .

it really does feel like I’m stuck in a world speaking Japanese whilst everyone at best has French snd English or bps have set it up so I’m talking into a void to be the objectified and talked about with corrected words for what I carefully nuanced to something which often had terrible implications for me.

it is time we had new people feeling safe instead of this. Instead of put through many years of being coerced into using inaccurate terms that were a con because once they were stuck on us they mean exactly what they are even if the lie at the time of insisting.

of course someone new doesn’t have to be able to describe to that level but it does give them food for thought if they notice they get different types of crash to see what they did preceding in a cumulative way - instead of the ‘oops you didn’t stick to your plan’ of fatigue clinics who clearly don’t get the world of other peoples noise laziness and manipulation (putting us in impossible situations where eg to just get to safety then means using energy because they dubbed to us or dumped something in us - which bps rhetoric encouraged and still seems to) .

If Friday is a write off at work then is it just cumulative of rest of week rather than looking for some thing you did on wed or Thurs that was different to Monday/tues - that big picture is really important of what’s theoretically maybe possible and then so is the stuff that can be replaced and cut out by aids of adjustments of support from others (which a real clinic should be mainly writing notes about instead of the bigotry pretending it’s just psychologising that pacing up and ‘maybe it’s’ insinuations their current stuff is still full of, along with a disrespectful tone)

I agree that to a tradesman you have to let in or let down then exhaustion is exhaustion and they don’t care what the source or pattern is just that we look a wreck and need to be lying down. But that someone could have transformed by life with a blue badge /permit near the building even tho apparently on Monday I could seem to walk and then by Friday am just ‘tired’ is so sad because it changed the trajectory for the sake of pretty small things. Having somewhere quiet to lie down (tho that’s a harder one in some places). Or maybe it is something else

one minute they claim lack of proof or know what to do the next is it closing their ears to us trying to help put it together or are we self-editing (I must say I have to go back and self-check and cross-compare with others to think it out but that’s different to if we are editing out the very but that’s been missing)

 

Fortunately it looks like Trish is a champion jelly nailer (I've just started reading her draft for the PEM leaflet, members only section)

 

Well I appreciate that we dont know what PEM is biologically, but surely we know that it takes energy for the brain to process sensory input? It's all activity. Just as an aside i sometimes wish it were called PAM as it's often very low level activity rather than what we think of as exertion.

Not for me, or at least not that i can notice, because for me I always have to do something in order to process strong negative emotions or they just eat me up & because the adrenaline/stress hormones give me the illusion of feeling much better than i actually am, it puts me at very high risk of overdoing it, so it's better to process or express my feelings as while the activity required to do so may cause PEM, it will be less bad than if i stay 'adrenalined-up' & overdo it badly as a result of missing the 'done enough' ques due to the adrenaline.

So for example I might lie here scribbling on blank paper with rage for example - so I think emotions only cause PEM because I do some kind of activity as well as the feeling, because I dont find I'm aware of getting PEM after joy, because i dont feel the need to discharge it (which usually requires some kind of physical or at least extra mental activity).
But I am not very-severe. I can easily imagine that perhaps even positive emotions alone are some kind of activity for the brain & body to process them, so from that POV could easily trigger it...

IF we take it that all activity above a certain threshold triggers PEM.

Given that simply too much reading (while lying completely flat) can trigger the same delayed 'now i have the flu including swollen glands/sore throat' type PEM, (ie that the energy expenditure of too much brain activity alone can cause it), I dont understand why there is doubt over whether sensory activity can trigger it. I know it may feel like sensory porocessing is an entirely passive thing - listening to sound etc, but lying still while it's happening doesnt make it physically passive, its not passive.

In response to the question "does it take energy for the brain to process sensory input"? Google AI says this (I have bookmarked the page should the sources it used be helpful but i dont have the capacity to look at them right now)

Yes the brain uses energy to process sensory input, with the brain consuming a significant amount of the body's energy for its functions, including sensory processing.
Here's a more detailed explanation:

• Brain's Energy Demands:
  The brain, despite being only 2% of the body's weight, consumes about 20% of its energy supply. This is because it's a highly active organ with countless chemical reactions occurring every second.
• Sensory Input and Energy:
  Specialized sensory neurons respond to stimuli from the environment, and the brain interprets this input, generating neural impulses that allow us to respond. This entire process, from receiving sensory information to generating a response, requires energy.

Lying flat in a room flooded with sunlight (which i find inherently pleasant when very well rested - i love the sun (obviously if i'm not well rested its agony but thats a different story. I'm trying to think of examples I can give of sensory stimuli leading to PEM on their own. I need to think back because my life the last couple of yrs have not offered me the opportunity to use my 'well-rested-time' on such pleasant things.

So if I lie in a well rested state - my 'well rested' state means i can walk, slowly the 4mtrs to the bathroom use the loo & then walk back. I'd be tired after & feel more dizzy on the return journey but I'd manage it without a lot of issue, as long as i didnt have to do it more than once without a good rest inbetween)

So in the example I'll b lying down in a room flooded with sunlight (albeit with a sun visor on, but the colour of sunlight lifts my spirits so i liked to have it if possible), and listening to something i find pleasant - bird song through the window or my favourite relaxing music for example...

If i do that for too long it leads to an immediate symptom increase - feeling nauseated, very dizzy, confused, very weak "fatugued" physically, unable to walk to the bathroom without bumping into the wall, pain levels & all cognitive functions significantly worse, even to the point i cant understand what's being said to me. My coordination goes completely awry, etc etc all the usual stuff.

PLUS, the previously enjoyable sound & light become excruciatingly painful, physical torture. Increasing ALL my symptoms, & I may even find i cannot move at all, effectively paralysed other than breathing & eye movement, until i have at least a while spent in silent darkness. There were occasions when i was more moderate, where it would happen in the garden, where if there was no one to help me & i went out there without ear defenders/eye mask, i wouldnt even be able to crawl back inside until the birds stopped singing!

This 'collapse' can be somewhat aleviated by rest - 1-4hrs for example, where i wont go back to my well rested baseline, but will improve.

I may or may not pay for it next day with 'proper' PEM - ie all of the above plus flu/infection-like symptoms. But if i do, the episode will be less severe & shorter lived than in the following scenario...

If I am well rested but also a bit nervous of something that is happening next week or something has just irritated me, both of which triggered stress hormones that increase my tolerance for sensory stimuli in the moment, that will cause me to listen for much too long - so I am conned by the adrenaline in how long i think i am able to manage it for....
then i will go not just to the point of collapse as i did before, but far beyond it, because I have not picked up on the 'stop now' signals & massively overdone it. I usually only stop because i just feel tired.

(just as an aside which explains the following example, I dont body-watch or use much time-contingent pacing, I use symptom contingent pacing, because I find it impossible to know how long i can do anything for, because it all depends on how much other stuff i done. I know people find it helpful but i just never got my head around it - i say that because it explains the next bit....)

So I am never aware of that huge adrenaline-induced sensory 'over-do', until the delayed PEM hits & I wonder what the heck is going on because i dont think I done anything to cause it.....
And then i think ''oh, wait, I listened to that whole CD yesterday AND the sun was shining!! ... WOW! no wonder! man that was foolish"

 

Also I can read for 20mins in silence when well rested, & on it's own will not trigger either PEM or immediate collapse/symptom increase. But I can only manage 5 mins when there is also background music, (even music i enjoy), or other low volume background sound, zero if the volume of the sound is loud.

It is the same experience as I cant read while standing up.
One activity/exertion at a time.

I also, if the sound is LOUD, become unable to coordinate my movements. So During the dawn chorus I struggle with my gait, despite it raising my spirits when i am well rested (agony during PEM).

I want to make it clear for any reader who thinks that the only reason i cant do these things is that I believe I cant/am expecting not to be able to... that it took ages for me to work out that the reason i sometimes had more trouble with reading/other functions than others. Its not a self fulfilling prophecy, because despite my being able to tell you all of this, I'm still, ridiculously & irrationally, surprised when it happens!

 

Sorry @Trish I realise you heard me say all this before, perhaps you wanted to hear from others instead

I have spent my energy ration now, & have a busy week so likely wont be able to come back for a while to respond to any comments

 

I think the answer has to be yes, because even if sensory stimuli and emotion had little or no effect on our cognition (which I doubt is true anyway), our responses to them are physical.

Healthy people assailed by loud noise or bright lights will tense up their core muscles. People enduring late-night noise from a party struggle to sleep partly because they can't relax. Anger or suspense makes people tense, and experiencing grief or laughter is very physical.

We don't need to go anywhere near so-called emotional lability, these responses alone are enough to trigger PEM. The only thing that's different between healthy people and those with ME/CFS is that reactions might be triggered at lower levels of stimulus; the responses themselves are the same. They're automatic, too, so difficult to switch off.

 

I haven't got the ability to find a different thread for this right now (and there are bits, such as where they mention talking therapy 'to support the impact of fatigue' - but then I'm a bit worried by them misunderstanding CBT as if it listens to someone, and the last section which indicates they are funding people to research talking therapies for fatigue for arthritis)

but I think it is useful to read how other places put things, particularly where they might be more commonly accepted and understood conditions by medics and laypersons - even if this is talking about fatigue and managing it, rather than PEM - it is from Versus Arthritis and it has given me some food for thought

Managing fatigue | Causes, self-help, support


Fatigue is of course different to ME/CFS and there is the thing with PEM where it is something specific, but also we end up having to try and communicate to people that overwhelimgin exhaustion happens on the days we are in PEM so the level of debilitation can be black and white for some vs not in PEM. Problem is that lots (including here) think exhaustion is fatigue and just word it back to that in their own mind where we can't make them change it.

Some aspects of what is describe in the linked page here ring some bells and are reasonably well-put, but reading it also underlines how ME/CFS clinics using fatigue guidelines isn't just flawed as a 'best fit' (though perhaps well-intentioned if it came from it being better than the terrible 'chronic fatigue' or old cfs-cbt guidelines which were the opposite of what helps because they are based on being able to think ones way out of it entirely) but is quite a different thing in both pattern and debility.

I think it is worth discussing in this context (compare and contrast), making sure we have accounted for the different levels of severity. I also think where we find terms that are good/OK in these or particularly problematic we flag these so we can align with useful terms and be ready to point out and make sure we underline issues with the ones (eg exercising is good) where there are big differences for me/cfs.

I haven't put this on its own thread because I'm not posting it to be a silo'd analysis of someone else's literature but to help us understand the landscape we are sat in and other 'learning' and words that those we talk to might be using and what they mean in those contexts.

I've seen Mango's thread (on Exhaustion Disorder) and agree there seems to be a predation from certain quarters that is happenning on the concept of/issue of 'fatigue' currently too.

There are lots of specifics going on at the moment but I only really seem to be able think well around some of these issues with time and space.

 

That's one of the really curly ones

For now I think this is still a case of 'we know people experience symptom exacerbation after these types of exertion/exposure but we don't know if this is due to the same pathology that drives PEM after physical exertion'

A popular explanation for symptom exacerbation after all types of "exertion" is that everything the body and brain do takes energy therefore a problem with energy causes symptoms. This feels intuitive but I don't think we know enough to say energy really is the problem, whether directly (not enough ATP to meet energy demand) or indirectly (some side effect of ATP production does something unhelpful). There are hypotheses along those lines but no robust evidence afaik

n=1

For me there's a major difference between symptom exacerbation after physical exertion compared to symptom exacerbation after other types of exertion or exposure

After physical exertion it's the stereotypical delayed onset of a very malaisey-fluey sort of symptom cluster that lasts a minimum of several days

Other types of exertion or exposure (that aren't mixed with physical exertion to confound matters) lead to a more exhaustion-type symptom cluster with onset already during the activity/exposure and which settles with a few hours of rest without any nasty next-day surprises. That said, this pattern applies to single events with rest between. I don't know what would happen with continuous exposure or repeat exposure without sufficient rest breaks

 

I've put this here because I think we forget how important PEM is as a concept. And how this dovetails with 'cumulative energy limit/envelope', 'how much rest we need after having to do something above our 'can't' and how this constantly leaving us in that situation leads to deterioration.

There are some elements to it [PEM description] that are for the new pwme, or medical diagnostician. I think the attacking and making it 'fuzzy' isn't an accident though and absolutely about liability and making sure that it isn't acknowledged that for this illness if you constantly force people through their limits - not just by GET or whatever renamed version, and we have to remember eg Sarah Tyson's insistent denial 'questionnaires can't harm severe people', but it might just be phone calls or forms - they will deteriorate.

And it isn't about that person 'managing their behaviour' but about someone accepting that as an illness, with the different levels we might individually have, there is a cumulative envelope and ... to me, what is more important than suggesting we 'break up' tasks like medical appointments we can't either break up or reduce the energy of and still get what we need from them, is acknowledging that radical rest particularly after needs to be at the level it needs to be.

At the moment I suspect most people hear me say '3 weeks non-functional' (and it is always at least twice what I politely guess at) people have been trained to assume I'm over estimating and within a day or two are saying 'you must have been tired'.


I think @MrMagoo post in the thread on benefits about how some are going to be caught in an in-between regarding the work coach/support group (and how those most ill might be least able to risk it thereby least able to access that right) is a spot on example. And it made me think of how they can't win because to tick the box they have in front of them they have to get someone else to do it or help, then doing it proves you can, trying and getting iller means you can't argue. Or just the amount of work and disturbance makes things inaccessible to those who need them the most, or creates a threat preventing those in that situation from accessing it because the impact would be so serious for them (even short term). More hoops whether it be responding to another nonsense paper or consultation or at the individual level to access what they need.

 

There is something about maybe thinking about looking at the best and most reliable way on these points we can be as a group getting our epistemic fact down. Some of which might dovetail with research we can find (but we probably do need some ballparks on recovery times and so on to start at least getting people realising how way off they are with how long eg a severe person takes to recover from that phone/face-to-face appointment).

Maybe we can also think of it as at least somewhere we can write down the necessary foreseeability and describe the actual on-the-ground strait jacket that is being created (to those who've already been through too many strait jackets before). I don't think the fuzzying of the term PEM has happened either by accident or without agenda of recent years. I do think we are at the point where we can clarify a few terms within it.

Even the coroner in Maeve's case seemed to get this with the term 'eroding her energy envelope each time', so I think if it is there and we can have a voice rather than being drowned out by the fingers in the ears sophism of people assuming and distracting with 'but maybe it might be the mind... so.... let's try the mind again for the 1000th time, in case it works this time'. But it's that same tune we are getting drowned out with as a hired orchestra again at the moment it feels.

Yet we can both individually and as a group have a constant drip, drip of being inundated with tasks with deadlines that don't fit the illness or sometimes seem unjustified unless someone is trying to use 'attrition'


I guess one question with the PEM thread here is: do we talk about threshold and impact separately - and can we considering I think the 'nub' of the illness actually is that threshold and deterioration. ANd also, even without that, how our function can be obliterated by someone continually battering at/pushing the buttons on what hurts us (eg noise, making us do an appointment on a day we will already be over-exerted and in PEM from something else we had to do as not sufficient time to recover/between things)

 

This might be side-thoughts @bobbler but what I’ve been thinking about benefits is along similar lines - it’s hard to get across the cumulative effects and the rolling PEM. And there are none so deaf, as those who will not listen.

The other part of the cumulative/rolling PEM is this - visible has taught me that I do not have enough energy to look after myself and rest appropriately. It’s either/or.
In what other illness do you need to stop before you “feel the burn”?
How can I say “I could do X but I shouldn’t” and expect to get benefits?

 

The sensory one is a straight yes and is I'm pretty sure already answered in the scientific psychology literature, cognitive psychology and perception in particular. Imagine these are subjects that might including studying issues to do with working conditions for air traffic controllers

And PS as these subjects are not in 'abnormal psychology' or 'the person' then apart from individual differences in eg style or hearing or ability to detect speed visually (mapped eg by the olde chart of normal distribution type thing) then really things in these subjects are/can be mapped out as 'task factors/size' and it is a case of describing the component parts in the task and the typical places for error and error types (and causes eg word-finding or mixing two things up - they'd do lists of these, and then the typical cause).

It is at least down to/explained in executive function and 'load'.

Whether you are interpreting the sensory as the equivalent of someone who is well trying to do their difficult calculations or other thinking or exam whilst there is noisy building work going on as 'like when you are trying to add up a list of costs and someone is deliberately shouting other numbers out randomly to distract you' (working memory can only hold so many) or as the brain having to work harder to drown out those noises and deal with the pain and keep concentration on the task at hand... the bottom line is that it becomes a far more energy-draining task.

Which puts both a limit on the amount of time it can be done for (egg-timer draining faster) and takes more out of you.

If you consider someone well just having the flu and a migraine then it isn't just about feeling rotten but the brain having to battle that at the same time as whatever task. Plenty of people who have come into the office feeling rotten have gone home not just because they want their bed but because they eventually also realise they aren't actually getting anywhere with whatever they are working on anyway.

So PEM is a double-edged sword on this, because I think we are both already sub-par so things are taking more bandwidth to try and do cognitively (if we can at all) but we are also more fragile to the sensory (and there are other small things that are in-between with this, like eye-fatigue on top) so that music that you could weather 10mins of when not in PEM you can't in PEM.

Of course the question of this is how much is specific to PEM rather than just whatever we might call the 'cognitive fatigue/fatiguability/symptom exacerbation'

Having put up with for several years a while back a terrible situation regarding noise and vibrations that was constant I only have an n=1 but know that it meant that instead of rest it meant my rest time was exertion (and as that accumulated I never had anywhere near a fair gap from it ending to starting to even begin to recover because of what it does to the body you hardly even get near 'rest mode' nevermind how must recovery rest a pwme needs after just one day of it).

I would call that state rolling PEM/being captured in a situation of body not being allowed to rest and in constant exacerbation - whether I was having to try and do anything on top or not that day - I never had a 'good day' in those many years of when you've finally slept off your PEM from an appointment. That situation took me to the tipping point of very severe ie through a huge amount of drop in severity/deterioration.

Of course some horrors might deliberately invalidate me (because of their own issues) and then when I look upset suggest it had 'an emotional component' because they just kicked the dog until it howled, so now it is a howling dog instead of badly treated - it wasn't [mediated by emotion], no matter how neat a trick that old chestnut is.

 

I feel relieved we are thinking similarly.

On that last point (and the reply I have just given to @Trish because it mentions executive function - which after all is 'the control function for the functions you are trying to do/oversight') there is of course another layer

which is that it has been allowed to be miscategorised into suggestions of 'mental health' inaccurately, given they know full well what they are inferring by saying that, but when you force someone who is in PEM and agonising pain to try and do 'just a quick conversation' - rather than waiting until a good time when they have rested off and can access the part of the brain they need to answer such serious questions - then we are being taken advantage of and vulnerable.

Either/and because we are in so much pain we are only partly there and our bodies will do anything to just 'polite small talk it' and finish the call and get back to what we know (as our body is screaming) is the urgent situation regarding rest.

And I'm pretty sure that for all their claiming not to understand the illness, those with the personality type where they do claim that do tend to show they get it all too well as it is that type that tends to not accept the no and take the hint but keeps you talking when in that situation and starts to 'lead your answers and put words in your mouth'.

The thing is because of my background (BSc psychology but also throughout my career I was doing a lot of market research and insight, so focus groups and surveys making sure you don't do anything of the sort with leading questions or squeezing answers out of people that they didn't mean), and because the illness isn't how they think - I'm so ill I can't move or function my brain to think properly and get into the mode to take control of my answers, but weirdly even if I'm out of it my memory is absolutely on and attending and it plays back like a video afterwards.

Quite often it is more like locked-in where I can't stop myself talking but it is like the out-of-body where the part of brain that could function on a good day to give the considered, correct answers is screaming at your mouth which is untethered and that person is well-aware and has swooped in to take control of but just can't stop it as you are in the exhaustion state where really what you are saying is more like half-hypnotism state half what I imaging when someone is force brainwashed in a horrible situation where they've been exhausted first then made to say whatever rhetoric.

We are neither mad, mentally ill, or without capacity to make our own decisions at that point, but we do need protection from another human being to step in and stop whoever it is that is on the other end from taking advantage by continuing with questions when you aren't in an appropriate state and all the old peer pressures and coercions and leading questions are too strong for us. Well people wouldn't appreciate if they had someone come by their hospital bed when they hadn't fully recovered from an operation for example and had someone asking them as if it was just a fun conversation to sign their life away - but they haven't been bathed in what we have with the nod and leave to keep yourself safe, and having to politely pretend and say nothing to strangers who don't need to know about how you are flat on your back in bed and can't do x (because of safety reasons of telling them that).

 

I think there is a lot of masking involved. We already know that autistic women often “mask” to fit in, women in general are told to put other peoples feelings/comfort/needs ahead of their own.

Mix that with a “majority female” disease (which it may not be, men could be under diagnosed but it doesn’t hurt to have them thinking it’s a woman’s disease and emasculate them anyway) it’s a nightmare of us just being “the wrong sort of patient”.

ETA Lets face it, GET is popular because it just puts a label on what everyone is thinking - “why don’t you just try harder”.