PEM discussion thread - post-exertional malaise

bobbler said:
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' 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).
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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”.
 
I don't know if this is related here but I found it interesting.

The Neurological Basis of Shutdowns in ADHD
Shutdowns in ADHD are linked to the brain’s handling of neurotransmitters like dopamine and norepinephrine, which are crucial in managing attention and emotional responses. When overwhelmed, the ADHD brain may struggle to regulate these chemicals effectively, leading to a shutdown.

The connection between neurotransmitter management and ADHD symptoms, specifically related to how the brain processes dopamine and norepinephrine, is well-documented in neuroscience. These neurotransmitters play crucial roles in regulating attention and emotional responses. Research suggests that disruptions or imbalances in their pathways can contribute to the characteristic symptoms of ADHD, including the propensity for ‘shutdowns’ under stress or overload.
LINK
 
Kitty said:
Yep, I understand that. The reason I keep poking at it (and I apologise, I know I'm not really getting us anywhere!) is that combining all overexertion symptoms into one phenomenon potentially makes it harder for newly diagnosed people, and their GPs, to describe and discuss them in a precise way. Aspects of it can feel really quite different, and that knowledge might be all a new patient has.

Maybe I'm imagining it and it doesn't really make it harder at all. It's difficult for us to cast off our own experience and put ourselves in the shoes of a struggling young person, a worried parent, or a doctor with more patients than they have time to see them.
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I think that the newly diagnosed person needs to know that if they're much sicker for days or weeks or more after an activity or period of activity, then it is a sign that they've overdone it either immediately before or in the recent past and that they need to pay attention to what they did that may have triggered it. It's helpful for people to know that symptoms can start right away or be delayed, so that they make the connection between the offending activities and the consequences, and start to get a handle on the cumulative nature of it all. But to me it makes no sense to insist that only delayed PEM is PEM. (That's not directed at you, Kitty, it's just something that came up a lot earlier in the thread/factsheet discussion.)

I think the wording @Trish has come up with in version 2 of the factsheet is perfect on symptoms that are eased by rest and last for minutes/an hour. I won't quote it because it's in the members-only thread. I wouldn't classify those as PEM. But if I did activities that triggered significant symptom exacerbations lasting an hour multiple times over the space of a few days, I would definitely crash.
 
bobbler said:
Yeah I’m more remarking on my lack of good name for it - I think I started using that because of the need to explain ‘and now this ends’ and because of the looks on the face of the other person as my speech changed significantly

ie I got into the habit of explaining myself (and wanted to focus on it being ‘I’m exhausted it affects my speech’ rather than if leaving that type of person to it them horribly suggesting some grim term alluding to going mad or ‘trauma’ or other nonsense people invent)

it’s exhaustion from a fstiguability fir me I guess in the sense I know I can’t really sit for twenty minutes and chat without it induces growing aches/pains through arms and feet and slowly curling body whilst my brain runs out and the sensory makes it painful to use my eyes and hurts my brain etc

but I don’t know why I separate cognitive from physical other than that the physical for me adds in a very specific pattern I’ve noticed. But the sensory and cognitive can be just as devastating (and cause the not being able to wake brain or body for days)
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Yeah, I think if you get those symptoms and they go away pretty soon after you stop talking then it's not PEM and cognitive fatigue is a good term for it. I started using "cognitive crash" for when those symptoms continue for days/weeks so that I could have a short-hand for carers. I can just text "Cog crash so text and gesture only" and they know we're in for a quiet few days/week.
 
Responding to a deleted post

Having found steroids calmed my body a bit on these things (rather than opposite) and knowing the adrenaline vs cortisol stuff I do before that (I’ve always assumed it was adrenaline keeping me standing through that) before that, I then felt it confirmed to me it is adrenaline/not enough cortisol for ‘that’ (whether ‘that’ of the me type creates an increased need or whatever) .

I also had a car suddenly spin out in front of me on a motorway once (speeding and hit the slipstream as they were about to pass a lorry) . I somehow instinctively did all the right things along the lines of what a regular talking the talk in a pub would say they’d do whilst it all being slow calm and so clear. And the car span several times and just as it was on the spin that if completed would have been in my path he did a pull out (steering into it,power on) and I’d braked enough and I could then fit the first time predict where it was going and moved to the hard shoulder to drive round.
Felt just like when I had to throw myself on a train to get to a very vital medical appointment with severe me and didn’t know I’d make each bit of journey just had to tackle it as I did as I must get there calm and concentrated.

then five minutes down the road I had to pull over as my whole body started shaking as the after adrenaline.

now me/cfs over exertion (I now call it ‘using momentum’ when you call on forcing to get yourself home my hook or crook) wasn’t quite that five minutes but I could also feel the relationship of it. And certainly the when you are in PEM but in big pain but can’t sleep yet most exhausted head and body buzzing. Probably because my body had resort to adrenaline to do the ‘high stress’ (I’m being sarcy to bps here) task of crawling home and up to bed well after I’d run beyond empty.

I don’t know if everyone is the same though
 
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A trivial but recent (and common) example. The effort of sitting up and trimming my hair or beard with clippers. Sometimes it goes okay, other times it’s too much and a few hours later I can feel the heaviness and aching spreading through my whole body, not just arms or core that had been used. Then that night, I just can’t get to sleep and don’t sleep as well. Not overthinking or anything just not restful.

It may only last a night or a few nights. It’s quite mild compared to the more unpleasant stuff (which then has more noticeable cardiovascular elements etc) from greater activity, but I find it a good example of the tired but wired from a purely physical activity rather than other activities which may involve cognitive overstimulation and or psychological elements.
 
Re: PEM delay.

I’ve had both what I believe to be instant and delayed PEM as moderate and severe.

Additionally, the instant PEM was much more common the first six months after the mild covid infection that resulted in my ME/CFS. I would almost black out due to exhaustion if I pushed too far. It was like a switch suddenly flipped. I can’t completely rule out that it was delayed, but I don’t remember having done things the days before the crashes.
 
Yann04 said:
The forum consensus seems to be to define PEM as a worsening of symptoms and function.
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Ah, I must have missed or forgot those discussions. I've just been considering the NICE definition as more or less the best we've got:
The worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms can typically worsen 12 to 48 hours after activity and last for days or even weeks, sometimes leading to a relapse. Post-exertional malaise may also be referred to as post-exertional symptom exacerbation.
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But what exactly does 'function' mean? Objectively doing less activity while in a crash? Couldn't someone push through a crash if, for example, they have to still go to work? Would it not be PEM if their activity didn't change but their fatigue, brain fog, pain, etc increased?
 
Utsikt said:
A worsening of function either directly or indirectly through getting more PEM by doing things you could do without PEM when not in PEM.
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This seems like a circular argument. 'PEM' is included in the definition to explain 'PEM'?
 
Utsikt said:
The ability to perform an action or tolerate stimuli. Roughly.

Yes. Loss of function is not required, but it’s often a part of it.
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I guess I'm not understanding why 'symptoms' alone doesn't cover it. For one, inability to tolerate stimuli could definitely be described as a symptom (e.g. light insensitivity).

But also, isn't the inability to perform an action wholly caused by the worsening of symptoms (fatigue, brain fog, etc)?
 
forestglip said:
This seems like a circular argument. 'PEM' is included in the definition to explain 'PEM'?
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PEM requires increased/new symptoms and can include loss of function.

So the initial PEM does not cause the additional PEM, the exertion or stimuli does. It’s just the threshold that’s lowered.

forestglip said:
But also, isn't the inability to perform an action wholly caused by the worsening of symptoms (fatigue, brain fog, etc)?
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When I’m in PEM, I don’t wash. I could wash, but that would make the symptoms worse. So it’s the anticipated consequence of the action that in itself makes me practically unable to perform the action, even though I’m not mechanistically unable to perform the action.
 
As an addition to the above:
This is why I like FUNCAP. It doesn’t ask «what can you do», it asks «what’s the consequence of doing X in terms of your ability to perform your regular activities», and ability means both can do and can do safely.
 
Utsikt said:
When I’m in PEM, I don’t wash. I could wash, but that would make the symptoms worse. So it’s the anticipated consequence of the action that in itself makes me practically unable to perform the action, even though I’m not mechanistically unable to perform the action.
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Hmm okay, so 'reduction in activity' can be due to worsened symptoms and/or to prevent further worsening of symptoms.

I guess I can imagine a hypothetical person whose only symptom in PEM is blurry vision. They are fully capable of continuing to do their job playing in an orchestra with blurry vision, but they take a break - reduction in activity/function - so that it doesn't get even worse.
 
My understanding of PEM is a pattern of worsening of symptoms that does not fit normal time scales or proportionality. It is very likely to be associated with loss of 'function' but I don't see that as within the definition of PEM. If you are nauseous you cannot eat but being unable to eat is not part of the definition of nausea.
 
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