Is the NIH/CDC going to use the right PEM definition for all their future research? Do patients need to act? Deadline 31 Jan

I didn't experience PEM during the first 6 years of a sudden viral onset M.E. The PEM started when I was feeling better and was able to exercise again. The regular exercise (running) and recovering from PEM made the symptoms more severe as the years went on. I did not understand PEM back then and figured when I 'recovered' I was back to my 'normal' again. Boy, was I wrong because it started affecting my cognitive function.

My biggest regret.
 
Simon M said:
The way the symptoms are scored might give misleading results

My other big concern with the questionnaire, which again relates to its accuracy, is about how PEM is scored. I think we need to score in a way that reflects how patients try very hard to avoid PEM.
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Very good point! And limiting the scale as it does, means folks like me who try to minimize the impact PEM has could easily be excluded.

Nor does the questionnaire take into account the increased brain fog with PEM Since my ME started as a "side effect"...the doctor's words...of oral surgery five years ago, I've constantly commented that "pain fries brains" I try hard not to overdo, but the ever changing target of WHAT defines overdoing can cause problems. One time, sweeping the floor is too much, and the backlash pain can fog me for days. Another time, I can ride to town and do an errand or two, then find pain, brain fog, and exhaustion do the same. What about when you're in the middle of something you cannot stop, and have to finish to be able to get home/get to bed? Then the PEM, at least for me, can be debilitating for weeks, not days.

Edited by admin to separate quote and reply.
 
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Wonko said:
My, personal, impression was it wasn't so much how over the limit, it was how long I continued once the limit had been breached (IRL it is frequently not possible to just stop, even if I am aware of the problem), and how much I continued to operate, under the now reduced limit, whilst PEM'd (over the next few days/weeks).

This distinction is I believe what takes people from severe to very severe, and reduces baselines, just the simple act of being alive can become above the "limit" and an ever increasing PEM spiral develops.
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:thumbup:

Also what I call compound PEM - kinda like compound interest:

Day1 do something that will trigger PEM and don't realize it

Day 2 so pleased you got away with yesterday - maybe I could achieve a little extra task today as well

Day 3 still ok - on a roll here

Day 4 - 3 days past the trigger and the first lot of PEM hits....payback from the other days to follow... and will hit me while I am flattened by the first lot.

It took me years to figure out what was going on and realize this was PEM. Although I didn't know what It was called. It's also why I don't believe this increasing activity such as GET works. If I have a 2-3 day delay for PEM then I could be building up to a world of pain during the delay period.

Getting into compound PEM will trigger a crash or relapse for me and seriously stuff things up for many a miserable month.
 
Another factor that confuses the issue of PEM - how long does it last and still get called PEM?

One could divide the worsening of symptoms after activity into 4 types:

1. PEM. Delayed response after increased activity - malaise that lasts hours or days, and then returns to pre-PEM symptom level and size of energy envelope.

2. Relapse. Starts like PEM but takes weeks or months to return to previous level. During relapse energy envelope is smaller, so PEM can be triggered at lower activity level.

3. Long term decline. Starts as relapse, but energy envelope decreases long term and symptoms never return to pre-relapse level.

4. Very severe ME - all activity, however small, sets off PEM, contributing to keeping the body at this very severe level.

Within 2 and 3 if the smaller energy envelope is breached, PEM can occur, and if this occurs too often, or is pushed through, it can lead to moving down a level.

Well that cheered me up (not).
 
Skycloud said:
@Andy - It looks to me as though Lllamamom has unintentionally included her comment in her quote of Simon M. The last 2 paragraphs are hers. I remember doing the same myself once.

Hi @Lllamamom welcome to the forum! You make a good point about brainfog, it's one of my major issues
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Thanks Skycloud.

@Lllamamom - I've taken the liberty of editing your post to make things a bit clearer.
 
@Trish I've had one major relapse(17 years ago), but it did not start or feel like PEM. I never returned to baseline after the relapse and I was aware of it. As for PEM, I always felt/feel as though I return to baseline- but apparently I do not because my energy envelop was shorter.

I'm not sure relapse and PEM can be used interchangeably?
 
Mij said:
@Trish I've had one major relapse(17 years ago), but it did not start or feel like PEM. I never returned to baseline after the relapse and I was aware of it. As for PEM, I always felt/feel as though I return to baseline- but apparently I do not because my energy envelop was shorter.

I'm not sure relapse and PEM can be used interchangeably?
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I didn't think she is. The way I read her post PEM is confined to level 1 and relapse happens at level 2 and 3.
 
My relapse was not from overdoing over a long period of time (level 2 or 3), or have symptoms of PEM.

My relapse was an 'immune response' from taking immunomodulators. I developed OI after the relapse which made my PEM episodes much worse.
 
strategist said:
Exactly. PEM is difficult to manage because I can feel good while doing too much, and only start feeling bad afterwards (usually next day).
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Yes! I used to be like this. Now I'm less able and have problems doing anything at all let alone too much.

Thanks to everyone contributing to this thread, it's been very interesting to read. Not up to commenting now (other than briefly above) after reading it all. Need to think it over, though maybe most of my concerns have been covered already.
 
Mij said:
@Trish I've had one major relapse(17 years ago), but it did not start or feel like PEM. I never returned to baseline after the relapse and I was aware of it. As for PEM, I always felt/feel as though I return to baseline- but apparently I do not because my energy envelop was shorter.

I'm not sure relapse and PEM can be used interchangeably?
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Good point, @Mij. I guess I was describing my own experience. I agree that events such as infections, surgery, trauma etc can bring on a relapse. Back to the drawing board for my theories.
 
Forestvon said:
I disagree with saying recovery can take 1 day to two weeks! I am severely affected and have had relapse taking 18 months to recover from, another relapse 6 months, and I suppose the relapses that made me severely affected in the first place have lasted so far over 20 years!
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I guess it could say "Typically taking 1 day to 2 weeks but in severe cases the crash may take many weeks, months or years."
 
Forestvon said:
I disagree with saying recovery can take 1 day to two weeks! I am severely affected and have had relapse taking 18 months to recover from, another relapse 6 months, and I suppose the relapses that made me severely affected in the first place have lasted so far over 20 years!
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Others have been making a good point. PEM is different than relapses and crashes so yes, PEM is usually a prolonged recovery from just that, PEM, which can take 1 day to 2 weeks but it is the relapses and crashes that can take many weeks, months and even years.
 
I think the one thing we can all agree on is that we are all rather different
Melanie said:
Others have been making a good point. PEM is different than relapses and crashes so yes, PEM is usually a prolonged recovery from just that, PEM, which can take 1 day to 2 weeks but it is the relapses and crashes that can take many weeks, months and even years.
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I, personally, think PEM can last for longer than 2 weeks.

I agree that PEM and relapses are different, though they may physically feel very similar.

However, I also believe that compound PEM as I mentioned above in #84 can slide into a relapse so that it can be difficult to tell when it is no longer just PEM, but is actually a relapse.
 
Mij said:
@Invisible Women . . . are you saying that relapse (compound PEM) has led to new symptoms/deterioration, or that it has shortened the energy production window but overall state remains the same?
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I am saying that compound PEM or multiple concurrent episodes of PEM:

Exacerbated existing symptoms
May cause dormant symptoms to flare
And reduces the energy threshold that triggers PEM
It can also lengthen the recovery from PEM


This is my experience of it at least. I appreciate others may be different.
 
I understand the need to specify the variability in triggering PEM - may occur during the trigger event or up to 3 days later. Otherwise incidences of PEM may be missed.

I wonder if it is necessary, within the scope of this exercise (pardon the wording) to specify the duration, other than to say may be prolonged to weeks or more.

We want to capture the patients who experience PEM, rather than capture severity?
 
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