Identifying and renaming inaccurate, inappropriate or minimising words, phrases, etc. in ME/CFS

I personally would prefer delayed PEM to be highlighted as Delayed PEM. Instead of just calling it PEM.
I would also like PEM to be used in 'Immediate OI PEM, rolling PEM, and we could add a Flare PEM that does not proceed to the delayed PEM. This is more continuous and can then be explained more.

I do find it confusing when we add all these other terms like crash, flare without adding PEM to it.

It would make more sense to me if they each had PEM attached to them.

In regards to using crash, I personally do not like it. For me, crash is what happened to me when I got ME. Like a car crash that changed everything.

I should have said all this on the PEM factsheet thread but I wasn't up to all the in's and out's of it all at time.

 

Nailed one important issue there. Robbing Peter to pay Paul/APR technically does it but not quite conveying the severity of the situation yet. I think that is where most of us end up forced to live because even kind human beings have implicit in them not to give what you fully are asking for (or there needs to be additional compassion/want to understand the extent when they do it) - someone getting something for you but calling you 4 times to get you to repeat what you already explained defeats the energy-save (and being able to do the bits when you weren't feeling as bad).

They really can't imagine from what they see that you are stuck in a situation on 250% of what you should be doing just to not even tick the essentials across a fortnight (that you've filtered down, so shower and toothbrush exchanged for medical things etc and the 'twice a day' idea has to be already seen as 'nice to have' and you also are talking about 'minimum before I'm creating more issues for myself').

Then you look at the understanding of those who are very severe when they end up somewhere that isn't home with very understanding carers and the controlled as much as possible environment there. I'd imagine it becomes so many moments in a day you can't say something every time and people don't believe the implications, but when they see them later in a deterioration or sleep being interrupted attribute it to something else.

There isn't yet a chart (seen one recently that conveys the idea, but doesn't get the proportions right) or video (I note these are very good for things like ADHD etc for being done not in an 'you are going to be educated' way, but inviting people in who might be curious about what life is like in reality - but it's risky giving how sorry I can seem at my worst and potential bullying),

and I think the most useful medium will be video game/game type things. Where of course increased severity increases the 'level' - a sort of virtual reality-ish combo of the sims, combined with the sort of markstrat thing (not very hi-tech used for marketing strategy 'games').
But also this sort of thing can bring alive how the deterioration and invidious choices and spiral gets put on people without incredible support, fortunate circumstances and somehow being incredibly protected from what has been created as policy from too many 'services' etc. Things like 'erk you do that change to your hours and your salary won't halve but you are only offered a lower job, so salary decreases a lot more and you have less control so it might be worse' when someone tries to solve the puzzle of 'how to make life add up'.

And can realise that without that building work/noise from neighbour (that they think is no harm) stopping it won't add up/you won’t recover from any PEM despite being given it so can’t avoid going downhill. As you get worse you get rewarded with more work from medical appointment or prescription or filling out forms/appointments for something else that turns out not to be on offer for us.

And that people have to start with grim things like not saying hello to people in the street they normally would, refusing to even go to the whatever bit of whatever wedding, not helping lift those boxes when your colleague is landed with a massive stack and you normally would (and look capable now, but it is already 50/50 if you can eat dinner that night or you'll be crawling straight to bed and unable to lift your arms already).

How that's exactly how someone ends 'stuck in bed all day' relatively quickly when it is your own life.


And eventually either because of their own needs (wanting to extract themselves) or I think it has been so drilled in, certainly in any professions, those who have been management/manager rather than underling and probably in 'busy types' (mums who are working etc) in fact the list is endless ... they switch to 'coaching' by starting to leave bits undone, yet having started or promised something etc.

...just because time passed, so you must be ready.

 

What does PEM mean to you? Any increase in symptoms that an ME/CFS patient experiences?

 

What about PAC?

Post Activity CRASH?

Chronic Relapse & Adverse Symptom Heightening

 

I have OI with my ME so there is a blending which I can't say that I can figure out well what is coming from the OI and what is coming from ME PEM. I do know that my OI severity travels with my PEM severity mostly though.

I've always said ME is PEM. So symptoms should be graded by the way they are expressed by PEM The different expressions being rolling PEM, delayed PEM and as I said in my last post we could add a flare PEM meaning it is PEM that does not proceed to the delayed PEM.

I might have to come back to this. Nearly time for bed.

 

No worries!

I believe we might use the term ‘PEM’ a bit differently. To me, not all of my symptoms are PEM. If I get immediate symptoms from sitting or standing, that’s OI. If I get a delayed worsening of symptoms from sitting or standing, it’s PEM.

 

Thanks. I'm aware my take on things could be wrong so I continue to try to understand.

 

Tetris - that’s what it kind of reminds me of. And how quickly you get to the rounds where you are hardly in control of stopping it all mounting up

and the trying to twist shapes into place to make harder ends meet whilst being apparently swan like becomes less and less doable etc

PLus of course even in the early rounds the cognitive load of having to do all that turning the shapes to make things fit that don't fit into the envelope, which is exertion/load in itself.

but with wildcards like ‘you get an allergy/other illness/new boss/extra admin due to forms for whatever’ added in, with each challenge with it on top like getting prescriptions not being as easy as others think when you are in a hair trigger life already and some items are hard to get etc or an illness takes it out if you and also adds in a trio fit an appointment that will cause a lot of PEM (read need many days/weeks full rest to recover - but that’s by your old calculations before you had an illness on top too)

 

Agree, it seems we are redefining PEM and excluding an important part of it

 

But is PEM = any symptoms someone with ME/CFS experiences?

 

I may be misunderstanding what you are saying, but I see the immediate response to OI as a symptom of ME, in the same way as I see the immediate effects of sensory hypersensitivities. If I lie down soon enough these effects rapidly dissipate.

That is not to ignore that OI and sensory issues contribute towards the cumulative triggering of PEM or can of themselves trigger PEM. For me the main distinction is that if the consequences dissipate readily after avoiding the trigger (ie lying down, escaping noise or light etc) then that is just general ME symptoms, however if the consequences persist for some hours or days or longer beyond exposure, then PEM has been triggered. I see PEM as somehow shifting into a different state that has a momentum of its own that will persist well beyond any trigger.

Obviously this is confused by the fact that these symptoms of OI or sensory hypersensitivities are exacerbated when in PEM as with any other symptom and confused by the fact that in PEM the thresholds for them triggering further PEM are also lowered. I would see what we refer to as rolling PEM, being a situation where any activity or sensory experience may trigger further PEM, such that we struggle to ever come out of PEM.

A big problem with understanding these contributory factors is that a number of things are happening at once also with interactions between them and for many we rarely or never get the chance to experience them one at a time.

I have a parallel experience with my food intolerances, where I also have a delayed response and the symptoms triggered overlap with my ME symptoms. So it was only for example with gluten, once I had stopped working, greatly reduced my activity levels and totally eliminated gluten from my diet, that I could say with certainty that consuming gluten triggered fatigue, malaise, migraine and IBS like symptoms after a twenty four hour delay, which would subside over several days, as long as I consumed no more gluten. Obviously with PEM avoiding completely any further activity, light, sound, smell, touch and remaining horizontal indefinitely are harder to achieve than eliminating gluten from your diet.

 

I don't define it that way. Mine would be more like:

A delayed increase in daily ME/CFS symptoms, a reduction in functional capacity, and feeling as if I have a virus, as a result of doing or experiencing something.

PEM can compound if I have to do another thing before recovering from the last one, causing further functional reduction, feeling even more ill, getting new and different symptoms. This can make the delay in onset hard to detect, but it is there.

 

This is a very good description of my current understanding of PEM vs ME/CFS symptoms in general.

 

I suggested DEM and PEM. They might be different but we don't know that yet. I feel it has to include exertion.

 

DED, delayed exertional deterioration. Quite descrptive since it makes me feel DED.

 

"Ded" is an internet slang term that originated from a misspelling of the word "dead." In online communities and social media, "ded" is often used humorously or informally to describe something as no longer functional, out of order, or extremely tired.

Or Dry Eye Disease.

 

it's important because it is the aspect that directly relates to the can't issue and seems to be being directly and deliberately made ambiguous by bps for a reason (I thought they would when the new guideline came out)

and because people don't anticipate that if we also get effects at the time (which I often do) then that isn't the 'depth' of the symptoms that will hit us eg 24hrs later, which is another level that even surprises me still now - that I think I'm suffering from doing x, then there is a new round which is actually worse.

I also agree that we don't know that the other aspects like fatiguability at the time or what people are calling 'almost PEM' or PEM that is short because it is averted from being as bad as it could be might also be PEM in the sense of contributing to overall cumulative too maybe, and that probably all 'exertion', particularly where it is 'over-threshold' either in one go, day or as part of a longer time period might be part of this needing a longer time to rest off than people imagine (if we do 'fully' recover at all, or it just seems near enough at the time until we've done it enough times then we get more obvious deterioration over months)

we seems to struggle on the minimisation front from :

- the what we 'can' be misunderstood because if we are put in a survival situation where we have no choice, or have to radical rest to pull-off eg an important medical thing people see that as 'can' without the 'we might not recover,and...'

- .... the depth of the symptoms are misunderstood because even if people can say and parrot 'yes later it is worse' they are still using their frame of reference that is some combinatino between their own experience of tired and what they see with their own eyes (tiredness straight after, but they don't see the PEM when we are in bed). And because the back-briefing we are constantly battling with every communication suggests we are exaggerators when we are underplayers. And because even in PEM if eg an earthquake happened then adrenaline might create a bit of a seeming 'can' it is just that the doing on top of PEM then exponentially makes the PEM worse. ... which relates to...

- the timing is not believed and because people get away with ignoring our needs they get into the habit of 'they got away with shorting help last time' and choosing not to look at 'we then struggled with even less function vs our essential needs for however long due to that, and are now slightly more deteriorated and that will add up to that being permanent and an even more impossible gap to bridge on the what our envelope is vs the envelope our rationalised to bare minimum essential needs require, such as medical appts that if we miss them we will get worse but take a lot of us and risk to do'

 

I think we absolutely cannot ignore that because of what we are battling against with the cognitive dissonance/status quo way of thinking that has been encouraged and how human beings think then we need to be very careful that good intentions do not create more complications with getting across the MOST important aspect of the illness being believed and understood.

It absolutely is most people, not just medics, ie human nature now to assume 'that little liberty won't hurt' and for people to rationalise what they do to people - who normally won't have yet had a time in their life where they got 'rest' anywhere near their threshold needs, so have been slogging along waiting for that day and when it comes need years of rest and are then given weeks - as too much effort for them by the point they acknowledge we even might have any need.

And that delayed aspect might not be all times for everyone but is the bit we have struggled to get heard or acknowledged and just as it has we are thinking of muddying it ourselves.

I saying this knowing that it was almost a relief when I started to get obvious fatiguability ie immediately as I'm talking or after I've used my arms because that changed everything on being believed at least a little. And the shock from people who had been close to me for decades before but when I was passed out sleep from PEM just 24hrs later or cumulative crash but they just bullied me as they didn't understand that and saw it as 'behavioural', yet that fatiguability of not being able to lift my arm for 4hrs or needing to sleep off not being able to talk was NOTHING compared to the days of it with a PEM crash.

It is tricky because of rolling PEM (but then I eventually crash on that as it piles up and I'm trying to get 'enough rest to do that one essential thing like the loo' or when more well 'enough rest at the weekend to just keep my job the next week but not enough to stop it piling and carrying over' as we do so). and with that the issue that most (I suspect) pwme hardly get out of PEM.

But we really need to be super, super careful and take far more consideration before we start writing something that removes that most important aspect - the bit that is the lynchpin of our disability. the bit that is absolutely not 'got' but we get blamed for, and really get blamed for as us just being useless and our minds gone mad when we 6months later are more debilitated 'for no reason' [as far as those who didn't heed our warnings at the time, which they do over and over because they won't do actions --> consequences]

I think there are big potential implications - particularly given the timing and what is going on in the UK currently - if we start changing PEM into a melding of 'could be all sorts' (I don't mind the odd caveat of 'sometimes it can be shorter') and losing the distinctive bit that is the mechanism to worse health we need to get across.

 

PS I suspect, horribly, most pwme (we just don't hear about because of this) are trapped in some dystopian hell where they are surrounded, at whatever level of severity they were at to begin with, by not enough support and coming across lots of people who are what we could call bullying them and making them deteriorate at a drop through the floor rate then defining them 'mad' and 'to be sorted' - although they would still say that is inadvertent, good intentions etc (coaching as it might help).

I say this because for the last few decades that is the default system, and any 'escape routes' of ill-health (quiet already set-up housing, employer willing to make significant adjustments based on faith and wanting to keep you and taking your word - and the pwme themselves not kidding themselves 'pacing up'/pushing through is a good idea, pension, PIP etc) all required doctors and the system and you would be lucky if one link in that chain didn't toe the line and supported. People can be ill for a long time and that will also fluctuate along with their health.

BY that I mean I suspect that most we never hear of and without fortunate circumstance disappear very swiftly from mild and whatever severity they started when they realised it was ME/CFS into being severe, very severe and then 'being disappeared'. WIth no net to catch them, and a label to justify them being unsaveable.

It's an illness where currently the norm of the system is that unless the family wants to 'deal with' the pwme then we have all been given clear messages and all avenues have been reached to be programmed with a 'let them slip through, unless they get troublesome to others then deal with them' type approach.

So that spectrum and the link of that vs the exertion thing is vital - particularly that as you decline, now it is a new threshold people need to accommodate so giving half of what someone asked for work accommodation-wise 6months later (when they've struggled on without change) well the person now needs far more.

It has been an illness that the most ill we hear of tend to come with quite heroic supporters who absolutely get it, which is so rare we have to think what happens to the most who don't have that. We are just starting to see the odd glimpse of the odd person via social media - sadly I think that situation is the norm.

We know we just don't hear of people and where do they go as once they've got additional labels often even ME-specific helps gets tinged with doubt of 'maybe they have this other thing'

So advice on how people should allow us to have boundaries and back us up on 'avoiding PEM' is fair, but I think we also need to be careful of how by most outsiders suggestion that the pwme themselves could manage it (without leeways given) will be read as 'their responsibility to manage themselves' and an excuse for that 'self-management' issue branding. Which is what the 'medical care' at best is currently seen as what we are entitled to, of patronising advice from non-pwme to stop us being so useless and manage our behaviour, rather than seeing it as an illness requiring support and adjustments and medical oversight.

Of course we implicitly know under that cognitive dissonance is the false belief that it is because it is not that bad or impossible, but it is so well-sold as a truism that people can just be tenacious around anything, there is nothing that can't be built up to or just done slowly, and the 'coping' double-meaning stuff that people really think they are being nice and even kind by coaching someone in how they manage their well child. Hence their term 'help'. Self-motivate and teach the man to catch that fish himself is kinder than just handing them the fish today whilst they are flat on their back. They also know it isn't their responsibility to fill the gaps that for other illnesses wouldn't be there. Or to believe it exists etc.

 

@bobbler I’m top foggy to keep track of everything at the moment, but I struggle to understand some of the perspectives here. It might be that I’ve misunderstood something.

Do you consider PEM to be ‘all symptoms someone with ME/CFS experience’ or is it something more restricted like ‘an increase in, and addition of, symptoms triggered by exertion, that are often, but not always, delayed’?

To me, it’s the latter. PEM isn’t ME/CFS, it’s a part of it.