PEM discussion thread - post-exertional malaise

Just to let you know I'm writing a couple of thoughts about this in the benefits thread, as it risks taking this one off topic.

 

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

 

My heart rates goes up and I start to shake when my brain energy starts to 'shutdown'. I need to full stop and lie down.

 

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.

 

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.

 

Posts moved from Attention grabbing media for spreading ME/CFS awareness

Yeah I thought some of them were okay though.

But wait what is PEM if not a worsening of symptoms?

 

The forum consensus seems to be to define PEM as a worsening of symptoms and function.

 

Yup. A worsening of function either directly or indirectly through getting more PEM by doing things you could do without PEM when not in PEM.

 

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:

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?

 

This seems like a circular argument. 'PEM' is included in the definition to explain 'PEM'?

 

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.

 

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)?

 

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.

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.

 

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.

 

We have to think of the target audience and why we are doing the communication

and what they’d assume by some of these terms or not get is hidden or needs to be understood

there’s an issue with if you don’t crash out and rest a long time now with PEM or get bombarded by sensory then you get even iller for longer , and if that’s continual it becomes permanent in as far as being a new level of disability (whether from PEM or just the exertion vs not getting the catch up rest to compensate) that we struggle to get across because I don’t think we’ve even nailed the describing it between us

 

Yeah, I'm having trouble understanding what 'definition' means here.

Something similar could be said for something like severe pollen allergies. Someone might reduce function (stay in the house) to not further worsen allergies. I can see how an enclopedia entry about pollen allergies could say something about how people with allergies often reduce activity in the spring, but would that 'reduction in function' be part of the 'definition' of allergies? Is this just semantics?

 

It think that the reduction in function is such an integral part of the experience of living with PEM, that it should be included.

Or rather, it’s such an integral part of my experience of living with PEM. So I’m biased.

It’s also one of the most difficult things to explain - I can do something, but I can’t. Why? Because I live with PEM.

 

I think 'reduction in function' makes sense as a part of the definition/description of ME/CFS since that's the syndrome that describes everything going on. PEM (disproportionate worsening of symptoms after exertion) is one of the aspects of the syndrome. Reduction in function can be another aspect - a consequence of PEM being part of ME/CFS.