PEM discussion thread - post-exertional malaise

I think you make a good case.

So PEM is the pattern of symptoms, and the timing of the symptoms. And the loss of function is a result of PEM, and a part of ME/CFS.

But I think that anytime PEM is mentioned, the consequence should also be mentioned. If only to affirm the reality we experience, because we really need that.

 

Yeah, I can see how it could help others understand if it's mentioned. Increase in fatigue? So what, we all get tired. Increase in fatigue so bad that you can't leave the house or you stay home to prevent it from getting even worse? That sounds pretty bad.

 

Its tricky because this spans both threads I guess

but I’d replied to a post in the attention-grabbing me/cfs media that was noting that some of them were inaccurate in content.

because my background is in marketing I feel one of the biggest issues for us is understanding that getting the message right for the audience is the important bit (and often nailing that well then pulls it through to be more shared or looked at)

getting attention for things that muddy the facts doesn’t help and if the point is fir people to understand certain points eg what the illness is, of certain actions we need, then it that coherence of messages and not having contradicting ones that makes us either understood or if all just noise and readers just pick what they want as what they think we have.

Bps works because they came up with a story they repeat as verbatim everywhere, whoever is writing it. Then we struggle to get across this more complex truth.

which is hard in itself and it would be great if we could nail something that is accurate and communicates it in a way that would bring it alive as a gist to the audiences we want to understand what me/cfs is (and isn’t) ie the penny-drop.

so I guess I’m talking about not just us managing to if we go back and forth long enough batter out what PEM actually is in me/cfs - which is the vital first step.

But then work out what the wider audience might need to be said differently as they will understand different terms in different ways we might - and importantly generally are coming from a deeply ingrained assumption when we say eg tired , or in pain, that it is something very much less significant than it actually is.

I don’t know how to get across that I theoretically could walk up some stairs if I’d had x days rest and it was a good day. But that it’s not just a theoretical’if I did it a lot I’d get more ill’ but that immediately even more essential things are being dropped and I’m ill asleep for three days . So if my food is downstairs and my toilet upstairs I can’t live. I get immediately significantly ill and my overall illness gets worsened swiftly just by the odd rationed stair in a week whilst that one exertion dominates my envelope above even having health left to eat or sit up . How do you get that across to someone who wants to play sophist and say ‘but you either can or can’t do a stairs’.

and when I realise and compare to other illnesses where they are known to be severely disabled eg RA definitely can’t do stair person but can sit up and chat and be dressed for more hours a day it makes me realise how do we crack this alotted way of thinking that seems to be one crux of the ‘don’t get it’ issue with me/cfs. But in a way that’s appropriate (ie you definitely would do comparisons with others with other illnesses).

 

As a very severe person. Increase of symptoms during PEM happens during the first weeks, while loss of function lasts for months. The loss of function is not due to the increase in symptoms, but due to the threshold for triggering more PEM being lowered [Ie. I can do less without triggering more PEM, not because my symptoms are worse at baseline], hence I would find it weird to view it through a purely symptomatic lense.

Edit:
I actually made a thread where there was quite a bit of discussion going into this a while ago:
Why so little focus on Functional Disability and so much focus on “Symptoms”?

 

We just aren't getting across these defined envelopes and just how crushing the PEM-envelope is by comparison, the 'bit' that is the definition of the disability part. It's not that we are 'tired' afterwards - like people want to use as a 'comparator' they are familiar with for other illnesses that have fatigue.

I don't think we often even realise we are doing this when we are doing it, and because it is such a hard job I couldn't even do it without a lot of help from people going back on forth over a long period of time to get it right I understand the wanting to just get something said. But it doesn't help when we don't bear in mind the default we are wanting people not to think/assume, at the same time as us then thinking what precise penny-drop we want them to get in its place.

It's that we get iller and iller and noone it sometimes feels is getting across that the effect of that doing the stairs is losses noone could live with even in the short-term in other things we can 'do' - and by focusing only on the term symptoms or 'increase in symptoms' we have this debate where laypersons get misled about it being about whether we really could at least sit up to eat if we pushed through that exhaustion - it is never properly understood as a can't. Not ever being actually told that if we lived life as they often straitjacket us into then within 2months of hell forcing ourselves through then we'd be catastrophically iller where we have deteriorated and none of these are any options or choices.

I know all the bartering about evidence and different levels needs to be had, but I think we need to do this more open-mindedly to actually consider how these are interpreted when we have a phrase that doesn't cut it in getting across what our disability is when we describe our illness.

And it really lets down pwme, whatever level we are, but at the more severe end we are incredibly vulnerable if even what is being said in support of us is just emotive and doesn't frankly try and diagram out or whatever plain way of communicating things might be. Mental images of us looking a bit pathetic going up the stairs doesn't cut through on what people need to get about who we are and what we are actually doing when we are tenaciously trying to organise our minescule lives to make them survivable with the tiny packet we have to divide between whatever tasks are thrown at us + priorities.

 

That is my experience as well. It might be more prevalent with the more severe, but it might also just be that it’s easier to notice. Because any loss of function has to be countered with more help. I don’t have anything I can cut back on and still survive.

 

I think whilst my mindset for years was always pride-wise thinking it isn't that I'm an incapable person, just this PEM-thing

That I've of recent years certainly been able to study my body more.

And I know a little while back I was in a situation where for something that was absolutely essential to me I had to help with lifting something - ridiculous for my health, but the alternative being worse long term. But that it could be managed to be limited in time and weight ie minimise as I was helping someone else, and just for a number of seconds. And then I'd basically have to plan in very careful recovery which would properly take weeks at least, but in the short term mean intense taking-the-PEM very seriously rest.

I managed it, so yes it wasn't that 'my muscles didn't work'. OK so that part of the conundrum about 'what we can say' bla bla has been confirmed (though no idea what it would have been when less ill or why).

BUt... the interesting part of this story is that, as is ME-bad luck, something had been done wrong and I had to repeat the exact same task later. And because of what the task was for my rest would be impacted as not as good until that had been completed, so I had a trade-off then in every day I couldn't do it again I'd be having not as good rest, but I needed enough rest to attempt it again.

So 5 days later I attempted that exact same lifting task. I didn't feel fully better, but phew I'd managed to do it without feeling like my muscles were damaged and they were now probably back (at first of course I can't even lift a drink to my mouth, literally, and my arm shakes as I try and force it).

It was a completely different kettle of fish to the first time. Even though I at the point of going in to attempt it had a completely, genuinely convinced mind that whilst the payback would be more the lifting ability would be the same. It 100% wasn't.

And in fact I'd say that the muscles I'd used to do it efficiently (ie using the right movement) before turned out to be utterly empty, not feeling empty but just not there as I used my practised-for-20yrs technique of bloody-mindedness (pretend you don't have ME and are back being the person you think you are who can do all sorts and will tackle and complete and overcome any challenege for a moment).

I ended up twisting and ripping all sorts as I was clearly having to try and engage and use other areas in my mind's determination to complete this task by hook or crook and as I was lifting one end of somethign by a certain point because I was in the middle of it and there was no alternative that wouldn't have involved more harm than for that task to complete. It was clear that even using the same body movement consciously it was different parts of my arms, sides, back, bits of leg in strange places that were having to get involved because the muscles that would be the strong ones that can do it 'on the first occasion' now weren't there.

I sort of knew this anyway, even from when I was more moderate and my gait when I was in PEM but having to get to a shop for something desperate or stuck in a conversation and feeling awful. I just wondered with how much the feeling awful and other symptoms was playing a part on balance and so on.

And of course adding it on top of the PEM before was expected to be a bad idea (would never have done it if it wasn't the best of the worst options) and it has been. That cumulation is more than the 'sum' of the two events, which is what laypersons assume, or even 'the sum + a bit extra'.

I find this is the problem that we find noone takes seriously in the consequences, that if they keep ignoring us saying about PEM and ignoring giving us the chance to recover from that PEM that it is somehow a shock again to them when as promised we are x% worse in xtime and now are less functional, just like the last 100 times they just ignored our voice.

I find this 'as if I'm speaking into the wind' when it is saying something that is fundamental to my safeyt but seems to be the thing most people care about least and would pay more attention to if I was talking about a sitcom or the weather, the most de-existing part of the illness and blame the bps entirely for choosing to do this to me.

 

As someone who doesn't experience many symptoms I can say that delayed PEM reduces 90% loss of function for days. It's like delayed PEM is a whole different illness on its own.

 

That's interesting that the threshold lowering lasts longer than the symptoms for you. Maybe it does for me too and I haven't made the connection. I do remember that thread now.

But even in this case, I think there are two ways to frame it:

• PEM is, after exertion, both the worsening of symptoms as well as the lowering of the exertion threshold that causes PEM.
• A reduced exertion threshold is another symptom of ME/CFS, and one of the symptoms which is worsened after exertion.

In either case, loss of function seems too indirect to be part of the definition of the symptom itself, and is instead an effect of PEM.

Maybe this is just all confusion on my part about what exactly 'symptom' and 'definition' mean. I like the idea of a symptom being able to theoretically be mapped to a specific physiological mechanism. For example:

• Rash in psoriasis: self-reactive immune cells attacking skin cells
• Breathlessness in cystic fibrosis: thick mucus preventing oxygen from reaching alveoli
• PEM: who knows, but maybe, for example, immune cells attacking the part of the brain involved in recovery from exertion

All of these can lead to other effects in one's life like reduction in activity, but are the other effects parts of the definition?

I feel like this might all just be semantics, and the real question is what details to include when discussing PEM to get the message across, and whether it might be wrong to not mention that there is often a profound reduction in activity after exertion. For example in the social media infographic that started this discussion. I don't really have any issue with that.

 

It is that tricky thing of: are people describing 'PEM' or 'cumulation/over-threshold' as the 'something that builds up' and then leads to a crash?

Am I correct in thinking that eventually everyone has a crash or has to be stuck sleeping it off for at least several days, just to not even recover but take the edge of to carry on again?

But that for me the PEM - and this is really hard trying to think it all through from going through my memory bank of different reactions to different scenarios in different severities - would sometimes just take me by surprise, eg I'd just sleep through my alarm for many hours on a day when I needed to be up and doing work and even when I woke up not be able to wake my brain to function.

Which must be a 'crash' , but is slightly different to the crash when I was permitted and predicted to have it every weekend whilst I was working full time but really should not have been. And the crash on the 9 days every 6 weeks where I was starting to collapse out in the days leading up to it, so it was 6 weeks just to make sure I didn't lose my job by planning in I knew if I didn't have a big stretch to sleep off the accumulated PEM then I wouldn't function to any level the next week.

It would be useful to hammer out, just for my own sanity what terms we might all agree on for these concepts of exhaustion accumulating, exhaustion affecting us, when the caffeine stops working and we crash out and have no function whatsoever and what we call each of those. But also I agree that whether it is PEM or whether it is pushing our boundaries / riding our threshold level of exertion that it is probably this over a long period of time, as much as anything that determines whether in xmonths time I'm more disabled.

I do think that really good radical rest comes into the equation with this medium-term (in 6months are you more disabled than you were) outcome vs what 'input' has gone into causing that, ie being able to totally sleep off a week of doing more than the threshold is very different to having carry-over where you rest-off just enough to be able to perform again.

If this 'carry-over' isn't 'PEM' , and PEM is just 'symptoms' in its description, or even if we include function, then do we need a term for what this elusive thing is that I'm trying to describe? That is almost like an ongoing scoring chart but equates pretty directly to symptoms other than the amount of sheer tenacity and strain and tricks like 25 alarms and caffeine and other ways of forcing an ill body to get going we are having to try and power through (except on the days we don't have to power through and can collapse|).

 

Yep, PEM sticks out like a sore thumb when you are in the mild/recovered end of the spectrum. It takes away your whole day(s). When you are in the severe/moderate end, on the other hand, you are sick 24x7 with 90% of functioning already lost. PEM days are then only worse than usual. You just don't realize how sick you really are since you forgot how it feels to be normal. At least that's how I felt. I didn't realize how sick I was till I was able to sit up or feel cool morning air on my face.

 

I think - again fir sanity and comfort - it might be really useful one day to be able to look at chunks of this task and see how PEM and other aspects of fatigueability and limits varies across different severities

on this basis I’d say I’ve never been mild. Though I’ve had times where I’ve had good days and seemed capable there has always been a nagging exhaustion or pushing through, just a relief it’s been at a level I could ignore it for that day or night. I didn’t know about PEM fit all those years. I definitely felt eg at uni like I couldn’t complete the travel in bus the methods others used and going to the library to sit after lectures were over was implicitly not possible so I’d try and photocopy or take out what I needed for home - when I did courses where literature was mostly online it was such a different world. I didn’t really know or have the architecture of vocabulary and knowledge of what I had to describe any of it , I was just stuck trying my best and using anything like caffeine to get me through from one task to the next.

It’s hard to know if that was rolling PEM from being in a world I was over threshold or what.

Now severe I’m in the same situation. I crave a day where I can have a choice of being under threshold but I don’t think those around me will ever have it in them to allow it. Just human nature that what is the most devastating thing for pwme - people who can’t resist giving you just less than you need - is a form of torture and leaves you in a. Brutal hell every day just surviving choosing which item drops off today vs how much worse you get whilst those around you whistle if you waste your energy Ponting it out again that I’m getting more ill just due to their innate values they can’t see in themselves and stupid principles still destroying me having access to what really what must be what ‘a life’ is termed as. You can’t have any quality of life whatever level you are if the world around you refuses to give you a minute where you can be safe and see a future can be planned as a bridge where you will be safe and one day you can meet your needs.

I find it all surprisingly upsetting when I feel things are being written in ways that don’t acknowledge this default that many/most are stuck in and so we have a tone as if PEM or deterioration is something which is only an issue for us personally. Not needing back up so we get the space we need so we have choices in the table

the amount of destruction I suffer that is embarking and lifelong from not being able to sort dental stuff or make certain medical spots a priority vs others just I see get out down by those same people as if it was me just choosing to let myself go. It’s heartbreaking and how dare they. Instead I’m stuck without it even adding up to get meals and wash enough whilst I watch these things I begged others for help so I’d have health left to do them but they didn’t take my situation seriously enough (or put others ahead of me again as if my urgent situation wouldn’t get more urgent - I think they just write me off so after I’d never been given a chance or help then it was pointless to them to prioritise me because hey my life will never be normal so keep helping others who had all the help before over me).

I don’t think there is anything more important therefore in any documents than we need to find a way to communicate that people have levels and within those there are limits others need to protect so that safety and not bring in pain and having a future is accessible to us. It doesn’t help skirting round with averages because it just gives an excuse for others to say it’s for us to sort out ourselves where if they say they will give us one hour of begrudging help that’s what we have to mend and make do with vs wanting to understand what short term they could fix eg like when I was stuck bullied either noise and vibrations to save huge % more disability in future. No one was telling them and making them hear that leaving me in that took away the difference between tolerable and not, between being able to shower once a week and have a conversation without embarrassment some days and other key extra things vs being trapped.

so it was all about function . I don’t know how we can change the lot of the people who need it without using these terms and bringing to life what these ridiculously restrictive envelopes mean and translate to as a ‘life’

 

PEM is stuck flat on my back and in pain needing knocked-out sleep and if not it’s due to other symptoms stopping that rest from beginning. I can’t sit up for most of the time and when I do then I need support for whole of head, back and arms, and eventually get overwhelming need to be flat.

Not in PEM is not much better other than the amount I can be not flat and how far I can potter and how unwell I feel in PEM before doing anything vs not being in PEM if I’m doing nothing.

 

I agree on this precisely. And I think it is the disposable income idea (that with severe you are at the stage where you are talking not wants but needs being removed and prioritised - and there is never a proper ‘good time’ when your catch up with the needs you have to knock out your calendar ) when you are in negative of what you need vs what you have , things are already so rationalized to not waste there is nothing to lose. And of course If you get 80% back to normal in moderate that’s a big difference in what you can do whereas at severe it’s waiting another x days to brush teeth and goodness knows how long fir getting near a shower is more obvious than whether you are underperforming at work or spending less time on cooking or shopping or showering

 

I disagree, PEM days are a lot worse when severe or worse, because they cause you to need more help immediately. There is nothing to cut back on, that you don’t need to survive.

So PEM might take you from 3 % of functioning to 1 %. And while that’s just two percentage points, it’s also 67 % of your functioning!