What would a good questionnaire for diagnosing PEM look like?

Starrynight said:
I think Trish's definition might rule me out TBH!
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Please don't let my definition rule anyone out, I was just attempting to summarise common features many people describe of PEM. There are likely to be significant variations, like shorter or longer times, rolling PEM making separate episodes indistinguishable and more. Since we don't know the biology involved, we can't tell the parameters of PEM with any precision.
 
Trish said:
Please don't let my definition rule anyone out, I was just attempting to summarise common features many people describe of PEM. There are likely to be significant variations, like shorter or longer times, rolling PEM making separate episodes indistinguishable and more. Since we don't know the biology involved, we can't tell the parameters of PEM with any precision.
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Years ago when I first got ME I had a symptom I found very strange, unlike anything I had experienced before. I became aware of the term PEM, from the ME literature presumably, and assumed it was describing that symptom, as it was post exertional.

Later I realised that many pwME used the term to describe something rather different, more to do with loss of function. I think this has been somewhat reinforced by the two day exercise test findings, evidence that something measurable happens a day or so after exertion. Whereas what I feel is more the same day and different symptoms. Now I don't know what I should call that.
 
Yann04 said:
If you don’t have a loss of function but an increase in symptoms, and you want to distinguish yourself from the concept of PEM, perhaps use the word “PESE” (post exertional symptom exacerbation) which is becoming quite commonly used.
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I jumped onto this thread without really explaining my reasoning very well, so apologies for any misunderstanding.

I am not trying to get away from the concept of PEM, definitely suffer from a form of post exertional malaise but in my case what is very apparent is a nervous system overload, often with aching, but the pain is the lesser evil, tired and wired x10! And mostly delayed by an hour or two after triggering event, often leaving me exhausted but completely unable to sleep or relax. Am I at a lower level of functioning a day or two later? Possibly, but that doesn't compare to the horrors of that initial spell.

Perhaps PENE is a better descriptor. Whether the immune system is involved maybe moot but I have no doubt there is a neurological component, a benzodiazepine is about the best remedy that I have had available to counter the sheer unpleasantness of it.
 
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Starrynight said:
I jumped onto this thread without really explaining my reasoning very well, so apologies for any misunderstanding.

I am not trying to get away from the concept of PEM, definitely suffer from a form of post exertional malaise but in my case what is very apparent is a nervous system overload, often with aching, but the pain is the lesser evil, tired and wired x10! And mostly delayed by an hour or two after triggering event, often leaving me exhausted but completely unable to sleep or relax. Am I at a lower level of functioning a day or two later? Possibly, but that doesn't compare to the horrors of that initial spell.

Perhaps PENE is a better descriptor. Whether the immune system is involved maybe moot but I have no doubt there is a neurological component, a benzodiazepine is about the best remedy that I have had available to counter the sheer unpleasantness of it.
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I wouldn’t go for that last acronym if I were you ;)
 
Starrynight said:
I may have missed a joke there?!

I wanted to emphasise the Neuro aspect of my malaise, some have used that term I believe.

Honestly don't have any preference for naming. All the acronyms have bad associations for myself now!
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A term for what may be in one’s boxers.

I’m not using the anatomical term because I don’t want someone searching this to find this unserious post.

More seriously, I agree that it could be framed as neurological because of the symptoms and such. But I am in agreement with Prof JE that it’s probably best avoided because we can’t know where the process originated or occurs that leaves us with neurological symptoms. Since the neurologists are so hostile to us it wouldn’t be wise to provoke them or catch their attention by appearing to make a claim to something we don’t know that we have yet.
 
Ash said:
A term for what may be in one’s boxers.

I’m not using the anatomical term because I don’t want someone searching this to find this unserious post.

More seriously, I agree that it could be framed as neurological because of the symptoms and such. But I am in agreement with Prof JE that it’s probably best avoided because we can’t know where the process originated or occurs that leaves us with neurological symptoms. Since the neurologists are so hostile to us it wouldn’t be wise to provoke them or catch their attention by appearing to make a claim to something we don’t know that we have yet.
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Thanks. I'm not about to talk about my PENE. I think in the UK it might be confused with talking about flowers if anything rather than invoking laughter!

This idea of not provoking neurologists seems quite quaint to me. I certainly hope some are lurking here, Long covid should have piqued the interest of those from many fields of medicine to look into post viral conditions. I accept that is rather wishful thinking!
 
Starrynight said:
Thanks. I'm not about to talk about my PENE. I think in the UK it might be confused with talking about flowers if anything rather than invoking laughter!

This idea of not provoking neurologists seems quite quaint to me. I certainly hope some are lurking here, Long covid should have piqued the interest of those from many fields of medicine to look into post viral conditions. I accept that is rather wishful thinking!
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Understood. It wouldn’t provoke them if a few people with ME or long COVID used the term between themselves.
But if it took off as an advocacy term in a bigger way then yes it would.

The reason for not provoking them into a conversation about the term in question is that we’d be on weak ground because it’s the discipline that gets to decide what is neurological and what isn’t.

It’s medicine’s thing and patients at scale don’t have the same inside information on how these categories are defined. It’s opaque to most of us without medical training.

The words and terms that are used in medicine very often don’t mean the same thing as they do in everyday language.


Sometimes the terms used by medicine carry a lot of stigma for the patient subject. So those are worth arguing about. But the rest of it is the business of the disciplines own dictionary of terms.

The medical establishment does mis-categorise medical conditions out of the whole medical discipline altogether. That’s ideological we have an excellent grasp on this as victims of the practice. I feel like we have enough to deal with arguing robustly over this domain where we are qualified for the task.

I do imagine if I were still alive when the biological processes of ME or some forms of it for some people are discovered and I were one and allocated to neurology, the heavy silence.

The atmosphere in the office, the two sided resentment. I think other other specialties-not including cardiologists- would have an easier time pretending that they hadn’t thrown a tantrum whenever they were called upon to review one of us for any reason and engaged in office and online bullying of patients with our diagnosis and so many others. I hope it’s not them.

I also hope that I live long enough to be allocated some physician or other for ME one day. It’s hard to manage without.
 
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