PEM for those who are, or were, mild sufferers, how would you describe it?

For me, PEM is a general worsening of my ME symptoms. My physically-induced PEM has a consistent delay of 24 hrs and lasts for hours (hard to tell when it ends). My cerebrally-induced PEM (typically from driving or socializing) can start up in less than an hour, and is variable in delay. Feels very similar if not identical. Also, I can block my physically-induce PEM with cumin (Cuminum cyminum), but it doesn't work on cerebrally-induced PEM. I've recently discovered that cumin seems to work in my brain, rather than elsewhere, since it's effective if taken sublingually and not swallowed.
 
Something that occured to me recently. The people newly affected by ME who will more obviously be affected by PEM will be those who exercise, given that they will be more likely to go further beyond their newly reduced energy limits, so what might be needed is different wording to describe PEM to those people, and then different wording that can be aimed at those who were previously more sedentary. I don't think this is a revolutionary thought at all but I can't recall it actually being said anywhere.
 
An interesting question. Perhaps reading tweets and articles by people with long Covid including PEM could help illuminate this. I have read of some who were former regular long distance runners and super fit who can now go for walks of a km or more, but if they jog even for just a couple of minutes they crash. And others who were both active and those who were sedentary experiencing PEM from everyday activities like going upstairs, or having a shower.
 
I'm sure I've seen tweets from folk like Paul Garner that have mentioned PEM. Because of this, I'm a bit hesitant about coining a new term for it at the moment, as it could potentially sow confusion for very unwell people who're already on a steep learning curve. I wonder if just continuing to explain it – including highlighting that some people get physical PEM symptoms from cognitive exertion – might be more straightforward?
 
Trish said:
I have read of some who were former regular long distance runners and super fit who can now go for walks of a km or more, but if they jog even for just a couple of minutes they crash. And others who were both active and those who were sedentary experiencing PEM from everyday activities like going upstairs, or having a shower.
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The important points for these examples would be that, as we know, the energy limits that each pwME has is extremely variable.

And in regard to the walking vs jogging, from a quick Google in theory jogging takes between 1.5 and 2 times the same number of calories that walking does, which means that the drain of jogging on a patients energy resources is far higher than the ability to regenerate those energy resources, which might explain, in part, why jogging is less tolerated than walking.
 
Kitty said:
I'm sure I've seen tweets from folk like Paul Garner that have mentioned PEM. Because of this, I'm a bit hesitant about coining a new term for it at the moment, as it could potentially sow confusion for very unwell people who're already on a steep learning curve. I wonder if just continuing to explain it – including highlighting that some people get physical PEM symptoms from cognitive exertion – might be more straightforward?
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I'm not looking for a new term, just explanations that would make the term PEM more understandable/relatable to those mild sufferers.
 
Trish said:
I have read of some who were former regular long distance runners and super fit who can now go for walks of a km or more, but if they jog even for just a couple of minutes they crash. And others who were both active and those who were sedentary experiencing PEM from everyday activities like going upstairs, or having a shower.
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They are still in the PVFS stages, so it's difficult to know how much they can do within their limits.
 
Before I learned the term PEM, I just used to talk about having 'hangovers'. Although it's vague and inaccurate, I think many people would grasp the underlying meaning – you overdo things, then suffer afterwards. I worked with a few people who were keen on sport and fitness, and they sometimes used it in rather the same way, specially after they'd done an event like a triathlon or played a particularly tough game of footie.
 
Kitty said:
I worked with a few people who were keen on sport and fitness, and they sometimes used it in rather the same way, specially after they'd done an event like a triathlon or played a particularly tough game of footie.
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That's the snag for me though, what I felt was totally unlike anything I had felt before. I'd never run a marathon when well but as a teen took part in a few 24 hour sports marathons for charity. By the end of it you could barely move your legs and still faced a hike of several miles to get home.

Sure you would feel very stiff and sore over the next day or two and, unlike PEM, the stiffness was eased by gentle movement and a warm bath. You might feel a bit tired and not quite up to par but nothing like PEM to me.
 
Invisible Woman said:
Sure you would feel very stiff and sore over the next day or two and, unlike PEM, the stiffness was eased by gentle movement and a warm bath. You might feel a bit tired and not quite up to par but nothing like PEM to me.
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I didn't mean that the symptoms are the same, just that the usage is. You do too much, and there are consequences – whether those involve PEM, pain from over-used muscles, or headache and nausea from drinking alcohol.
 
Kitty said:
I'm sure I've seen tweets from folk like Paul Garner that have mentioned PEM. Because of this, I'm a bit hesitant about coining a new term for it at the moment, as it could potentially sow confusion for very unwell people who're already on a steep learning curve. I wonder if just continuing to explain it – including highlighting that some people get physical PEM symptoms from cognitive exertion – might be more straightforward?
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For better or worse, the term has been widely adopted by the COVID community, surprisingly so I'd say. So at this point we are more in the territory of a poor standard being better than throwing confusion by seeking perfection. Perhaps crash might work well, but it wouldn't be adopted by professionals.

Same with fatigue. Same with malaise. Same with brain fog. None are perfect, but they are understood. They are all twisted with malicious intent to fit the BPS narrative but that will happen regardless with any new term. There is no perfection here, only good, good for the patients and their recovery.

Or put another way:

standards.png
 
Kitty said:
I didn't mean that the symptoms are the same, just that the usage is. You do too much, and there are consequences – whether those involve PEM, pain from over-used muscles, or headache and nausea from drinking alcohol.
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Sorry, I'm probably not being clear.

It's the usage of the same terms, or the possible mistake by healthy individuals that they might mean the same things that are a concern.

This is something I came up against repeated in the early years. Perfectly healthy people telling me that they sometimes felt the same / a similar thing.

We all get [insert descriptor of choice] here. This seemed to lead to the automatic assumption that people with ME are either lazy, wusses or focussing too much on their symptoms.
 
Andy said:
I'm not looking for a new term, just explanations that would make the term PEM more understandable/relatable to those mild sufferers.
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I found PEM quite understandable as a concept, especially as I realised (from keeping records) I did indeed have a 24hr delay. It made the apparent lack of any cause and effect pattern start to make sense.
All I actually needed was to hear about it.
(...and then I had to get over my devout wish for my illness to be proven to be something else. Anything treatable. Or even measurable.)

There was a series of cartoons I remember from when I started to click that this was my experience. A girl who goes out for a coffee with a friend and then you follow what the pwME does (incl symptoms) for the next week vs what the friend does.
 
Mine presents itself in quite an odd way, and I'm not sure how common this is (probably not so much). I think I'll just add more confusion to the subject with this, but here it goes.

If we only count physically-induced PEM, I would be a very mild case with a close-to-normal life. I do have PEM after physical activity but my threshold for it is very high, these activities are somewhat demanding for healthy people too. Examples of what induced PEM in me: assembling a heavy bed; taking a long walk to a museum, spending about 2-3 hours there, then walking back; taking down, washing, then putting back my (many, long) curtains. What happens afterwards: the day this happens I end up with a normal level of exhaustion, but PEM always starts the next day and lasts for two days, like clockwork, making it difficult for me to carry out normal daily activities during that time.

So why does this bother me if I can do quite a lot physically and pacing would be easy for me? Because environmental/sensory stimuli trigger the same symptoms much more easily in me and this creates a much bigger struggle in my life. However, I don't know if this is the same as PEM. The symptoms are the same, at least I can't really tell the difference, but while with physically-induced PEM I have a 24-hour delay, the response to the environmental trigger is quite quick. Otherwise, they feel the same.

So because of this, I never really know how to rate my severity, because often I don't fit the description of the categories. By one factor, I'm very mild, by another one, I'm somewhere between mild and moderate but probably worse on really bad days.
I'm not sure if there are others whose physical-enviromental/sensory triggers are similarly imbalanced but I wish I only had (my very mild) PEM.
 
Wyva said:
So why does this bother me if I can do quite a lot physically and pacing would be easy for me? Because environmental/sensory stimuli trigger the same symptoms much more easily in me and this creates a much bigger struggle in my life. However, I don't know if this is the same as PEM. The symptoms are the same, at least I can't really tell the difference, but while with physically-induced PEM I have a 24-hour delay, the response to the environmental trigger is quite quick. Otherwise, they feel the same.
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I get immediate PEM when I over exert myself during allergy season and/ or a new viral infection onset. The overall experience is similar as the 12-15 hour delayed PEM, but it's not as distressful and doesn't produce cognitive impairment.
 
I recall walking along a very busy city street in 1972 and looking at people walking past me, all seriously intent on going somewhere. The thought struck me that if they felt as terrible as I did they wouldn't be there. It was the first brief glimpse I allowed myself of my own reality.
 
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