Post-Exertional Malaise - a discussion including defining and measuring PEM

Mij said:
My experience is that PEM is always severe no matter how 'mild, moderate or severe' the patient.

My PEM was always severe even when I was feeling 90% 'recovered' improved years ago.
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That is not my experience. When I was mildly affected, I used to exercise and got some postexertional malaise, a lot of it focused on muscles/tendons/ligaments, but I was still able to do sedentary activities as a student. But it wasn't until a relapse and then I became more ill that some symptoms like sore throats and tender lymph nodes became part of my postexertional malaise.
 
Mij said:
My experience is that PEM is always severe no matter how 'mild, moderate or severe' the patient.

My PEM was always severe even when I was feeling 90% 'recovered' improved years ago.
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Me too regarding PEM and crashes, they are the same severity when I was mild as they are now when I’m mostly bedridden, the only difference is as I’ve gotten more severe they became more frequent, last much longer, and are much less improved by rest. As I got more severe I was in the same crash mode for longer or all the time.
 
Dolphin said:
That is not my experience. When I was mildly affected, I used to exercise and got some postexertional malaise, a lot of it focused on muscles/tendons/ligaments, but I was still able to do sedentary activities as a student. But it wasn't until a relapse and then I became more ill that some symptoms like sore throats and tender lymph nodes became part of my postexertional malaise.
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Maybe because you were mild in your late teens or early twenties (student) and many of us got ME and had our mild phase much later in life?

Age is a big confounding factor when comparing symptoms and disease course between people, and it’s suggested that younger people experience PEM differently then older.
 
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leokitten said:
Maybe because you were mild in your late teens or early twenties (student) and many of us got ME and had our mild phase much later in life?

Age is a big confounding factor when comparing symptoms and disease course between people, and it’s well known that younger people experience PEM differently then older.
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Perhaps. Alternatively, perhaps people don't consider some symptoms postexertional malaise or a certain level of symptoms postexertional malaise in which case it's a bit of bit of a tautology: postexertional malaise always takes the same form and the same severity (whether somebody is mild or severe) only because only a certain set of symptoms and a certain severity of symptoms is seen as postexertional malaise (by a particular individual).

When I had a major relapse, when young, I did get a sore throat and my glands fell swollen, but other times the feeling was less intense.
 
Trish said:
Amazing how many things are 'well known' that I've never heard of. Can you provide a source of evidence for this?
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I’ll have to find it from a paper or reference I read, which I cannot remember now. But I also found it intriguing as it said that young pwME describe the experience and symptoms of PEM differently then us adults. If anyone else remembers where I might’ve read that I would appreciate the help.

I should also change its not “well known” to its “suggested” or “described”
 
Moved posts
leokitten said:
I’ll have to find it from a paper or reference I read, which I cannot remember now. But I also found it intriguing as it said that young pwME describe the experience and symptoms of PEM differently then us adults. If anyone else remembers where I might’ve read that I would appreciate the help.

I should also change its not “well known” to its “suggested” or “described”
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Never mind. It's off topic for this thread anyway. I suspect it may have been Crawley, and when I read it I attributed her alleged findings to misdiagnosed rather than real differences.
 
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Trish said:
Never mind. It's off topic for this thread anyway. I suspect it may have been Crawley, and when I read it I attributed her alleged findings to misdiagnosed rather than real differences.
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No it wasn’t Crawley I know the usual suspects and do not read their garbage.

It was from MEpedia page on PEM, which referenced a page from Dr. David Bell on pediatric ME/CFS which referenced a paper from Dr Leonard Jason. It suggested that children do not describe having PEM at all or at least not in the way adults describe it.
It is important to understand that in pediatric cases of ME/CFS, children do not describe having PEM. They can experience a relapse from exertion, perhaps from just taking the school bus, having to spend prolonged periods in bed.[20]
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For teenagers, which are part of this cohort, they are developed enough to fully describe PEM in the same way as adults if they experience it in the same way, so it’s not much of an extrapolation to say that many teenagers do not experience the symptoms of PEM the same way as adults.
 
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leokitten said:
I’ll have to find it from a paper or reference I read, which I cannot remember now. But I also found it intriguing as it said that young pwME describe the experience and symptoms of PEM differently then us adults. If anyone else remembers where I might’ve read that I would appreciate the help.

I should also change its not “well known” to its “suggested” or “described”
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Young pwME adopt the language from medical interventions and online sources.

The younger the more likely to assimilate given language into developing verbal and experiential constructs. Your world view is framed by interaction and experience.
You would not recognise ME from descriptions on some websites , it is all " fatigue" focused and descriptions of PEM are shockingly bad . This forms a child's/ adolescent' s reference.

Queries re PEM were up until very recently focused as increase in tiredness and fatigue and other symptoms were not widely acknowledged or ascribed to " anxiety". In many places this is still the case.

If you consider the paediatric literature in UK it's easy to see how young pwME may describe their illness. The language is given to them , if it " fits" then it is not challenged .
Many use fatigue when it is fatiguability.

Placed in context it's not difficult to understand why descriptions differ. If there was better understanding the language may be very different.

ETA
Link to Action for ME page
This has improves after feedback, including a change of stock photo, ,but see description of PEM

https://www.actionforme.org.uk/cyp-symptoms
 
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leokitten said:
No it wasn’t Crawley I know the usual suspects and do not read their garbage.

It was from MEpedia page on PEM, which referenced a page from Dr. David Bell on pediatric ME/CFS which referenced a paper from Dr Leonard Jason. It suggested that children do not describe having PEM at all or at least not in the way adults describe it.


For teenagers, which are part of this cohort, they are developed enough to fully describe PEM in the same way as adults if they experience it in the same way, so it’s not much of an extrapolation to say that many teenagers do not experience the symptoms of PEM the same way as adults.
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I was a tween (11), my mum was an adult, our pem was exactly the same. The only thing to be careful with children is that they very quickly don't know what normal is, because they don't have a long history of life experiences to draw upon.
 
Amw66 said:
Young pwME adopt the language from medical interventions and online sources.

The younger the more likely to assimilate given language into developing verbal and experiential constructs. Your world view is framed by interaction and experience.
You would not recognise ME from descriptions on some websites , it is all " fatigue" focused and descriptions of PEM are shockingly bad . This forms a child's/ adolescent' s reference.

Queries re PEM were up until very recently focused as increase in tiredness and fatigue and other symptoms were not widely acknowledged or ascribed to " anxiety". In many places this is still the case.

If you consider the paediatric literature in UK it's easy to see how young pwME may describe their illness. The language is given to them , if it " fits" then it is not challenged .
Many use fatigue when it is fatiguability.

Placed in context it's not difficult to understand why descriptions differ. If there was better understanding the language may be very different.

ETA
Link to Action for ME page
This has improves after feedback, including a change of stock photo, ,but see description of PEM

https://www.actionforme.org.uk/cyp-symptoms
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Kids generally don't have the wordage or full comprehension of what words mean.

I had been very fit and healthy child previously then was hit heavily by a lot of brain symptoms. I mainly would use phrases like 'I'm so tired,' which was highly inappropriate to describe things. I had no experience of what it was to be unwell or to describe it to others.

From knowing other child suffers and adult suffers, I've seen no evidence that a child's M.E. differs in any fundamental way.
 
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Shinygleamy said:
Kids generally don't have the wordage or full comprehension of what words mean.
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Some do but are limited by the standard vocabulary used.
Some can describe things very well but are not listened to, or their descriptions not drilled down into for appropriate symptom management.
Dizziness, breathlessness and gastric issues have only recently been accepted as signs of paediatric OI issues, and only in some places . Anxiety was the previous catch all and still pertains .
 
Sly Saint said:
Post Exertional Malaise Timecourse in ME from the Workwell Foundation
https://workwellfoundation.org/wp-content/uploads/2020/03/WW-PEM-Timecourse.pdf
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Thanks for re-posting this. I've seen this chart before but I keep forgetting about it.

I do wonder whether I have both "short term" and "long term" PEM? (as defined by this chart)

It's hard enough for me to keep track of even those symptoms that come 1-2 days after "too much" (hard to define) activity. I have no idea how I'd keep track of activity vs. symptoms when these come 7 days (or more) after the activity.

I resist symptom diaries to track PEM because when the few times I've tried it in the past it always led to feeling very depressed over how little I do vs. how many symptoms I get.

I'm impressed by folks who are able track all their symptoms and without it making them feel completely depressed.
 
Sly Saint said:
Post Exertional Malaise Timecourse in ME
from the
Workwell Foundation
https://workwellfoundation.org/wp-content/uploads/2020/03/WW-PEM-Timecourse.pdf
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We've discussed this before somewhere. I have two main issues with the chart:

1) What they call immediate PEM is what I'd call fatiguability. (@Trish)

2) The linear presentation makes it look like the 3 stages follow each other. My experience is that
a) I can skip the immediate stage altogether and still get the later stage PEM, and
b) I always get all the symptoms listed under both short-term and long-term PEM together, irrespective of how long a PEM episode lasts.​
 
I think what the chart is summarising is the phases their patients go through when they deliberately trigger PEM using CPET.

So they get immediate effects which I class as the effects of fatiguability, but also get symptoms lasting several days afterwards, which I call PEM.

Once an episode of PEM kicks in and we know we've overdone activity and are in for a bad few days, we can sometimes look back and identify a specific activity or series of activities as the trigger, and decide to describe the fatiguability symptoms we felt immediately as the starting point of the PEM episode.

Or we can continue to refer to that part as fatiguability, and describe the PEM as starting at the later point when more symptoms kick in.

In circumstances where we are not triggering PEM, we still get the same fatiguability symptoms, though perhaps more mildly, but provided we stop and rest soon enough and don't build up too much activity too short a time, we dont suffer PEM over the following days.

It seems clear to me from their description of PEM lasting a day or more that they are using the term for what happens when we overdo activity, not for daily fatiguability while pacing successfully. The initial immediate phase they include in their diagram is the part where i think the naming is unhelpful.
 
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Post-exertional malaise (PEM): An imprecise term used to describe a feeling of unwellness after physical activity.

Post-exertional malaise is characterized by symptoms that tend to worsen 12 to 48 hours after physical activity and persist for days or even weeks.3

PEM is a characteristic of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) but can occur on its own without any clear etiology. Underlying causes range from subclinical hypothyroidism and obstructive sleep apnea to polymyalgia rheumatica and bipolar depression.
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https://www.verywellhealth.com/what-is-malaise-189334

so PEM is a separate 'disorder'? since when?
 
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