PEM discussion thread - post-exertional malaise

Utsikt said:
@nataliezzz
There’s a lot here I’m not going to comment on, but I’ll try to see if I understand your assertion.

You believe that there might be a factor X, that in combination with factor Y, causes PEM, and e.g. in combination with Z, causes OI? (X, Y, and Z might be multiple factors.) And X + P results in widespread pain, and so on.

And you call factor X: ME/CFS?

To me, that’s just wrong, because you’re redefining the concept of ME/CFS. But it might be a language thing where what you actually mean isn’t the diagnosis/concept of ME/CFS, but rather the currently unknown mechanism(s) that manifests as the cluster of symptoms we call ME/CFS?

But that still wouldn’t be right because ME/CFS requires PEM, so the mechanism(s) behind ME/CFS must include Y.
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PEM is a unique symptom because it is not a symptom of (many) other disorders, but that does not mean that in people for whom all of these symptoms tend to cluster in varying combinations (fatigue, unrefreshing/disturbed sleep, body pain, brain fog, IBS, sensory sensitivities, etc. and yes, PEM) that presence/absence of PEM specifically makes it a different disorder (in my opinion). For example, a quick Google search indicated there's a study that found 47% of a sample of GWI patients endorsed PEM. Let's just presume this is a good study for the moment (I haven't looked into it); I don't think 47% of GWI patients having PEM mean that 47% of GWI patients have a separate/additional underlying disorder (ME/CFS) in addition to whatever is causing their GWI while those w/ just fatigue/pain/cognitive dysfunction/disturbed sleep/etc. w/ no PEM only have GWI.

That's my personal opinion (that I am trying to convince others of the validity of).
Utsikt said:
PS, I think we might be in the wrong thread again. I don’t know where to put this, because it isn’t really about PEM per se. And the concept of ME/CFS thread is about a specific paper.
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I have no idea, either. Sorry.
 
nataliezzz said:
PEM is a unique symptom because it is not a symptom of (many) other disorders, but that does not mean that in people for whom all of these symptoms tend to cluster in varying combinations (fatigue, unrefreshing/disturbed sleep, body pain, brain fog, IBS, sensory sensitivities, etc. and yes, PEM) that presence/absence of PEM specifically makes it a different disorder (in my opinion).
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Why is that your opinion? We need an explanation of the underlying logic here, on a meta level. Does my explanation in the previous post make sense? Is it a correct representation of your opinion?
nataliezzz said:
For example, a quick Google search indicated there's a study that found 47% of a sample of GWI patients endorsed PEM. Let's just presume this is a good study for the moment (I haven't looked into it); I don't think 47% of GWI patients having PEM mean that 47% of GWI patients have a separate/additional underlying disorder (ME/CFS) in addition to whatever is causing their GWI while those w/ just fatigue/pain/cognitive dysfunction/disturbed sleep/etc. w/ no PEM only have GWI.
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Can you share the paper? We might already have a thread on it, or one could be made
nataliezzz said:
That's my personal opinion (that I am trying to convince others of the validity of).
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Others might need to see the underlying logic in order to assess the validity of the opinion.
 
Natalies idea, assuming I am understanding it correctly, does make sense to me. A disease can have very different presentations, and I think it could very well be possible that a certain group of some unexplained disorder or symptom that doesn't currently fall under the criteria of what we consider me/cfs, could have the same underlying cause. Once we have a diagnostic marker, we might consider a big portion of people with disorders like IBS to actually have whatever we call "me/cfs" at that point.
 
Trish said:
I can't keep up with all these posts. I just want to make one point. Natalie, you keep referring to PEM as a symptom. I think that's wrong. I think it's an episodic phenomenon of a change in the severity and sometimes number of symptoms.
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That's definitely an interesting way to look at it. As discussed above though, some people do seem to experience PEM without having other symptoms at baseline (e.g. the person whose ME/CFS starts with just PEM after they work out hard at the gym, but without ongoing chronic fatigue/malaise at baseline), so it can't always be described as a change in the severity of symptoms (sometimes it's just new symptoms).
 
nataliezzz said:
That's definitely an interesting way to look at it. As discussed above though, some people do seem to experience PEM without having other symptoms at baseline (e.g. the person whose ME/CFS starts with just PEM after they work out hard at the gym, but without ongoing chronic fatigue/malaise at baseline), so it can't always be described as a change in the severity of symptoms (sometimes it's just new symptoms).
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I dont think saying that not having symptoms at baseline means they do not have me/cfs. I would just call the me/cfs, even if it may be (very) mild. It's just nearly impossible to make a diagnosis in those cases, as the majority wouldn't even go to a doctor for such things and just think they struggle with sports, or not even realize it is triggered by exercise and think they have a bad immune system and getting the flu all the time.
 
Utsikt said:
Why is that your opinion? We need an explanation of the underlying logic here, on a meta level. Does my explanation in the previous post make sense? Is it a correct representation of your opinion?
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Your explanation honestly lost me a little, I'm not gonna lie lol (so I can't say whether it's a correct representation of my opinion). But thank you for laying it out in that level of detail; I may try to come back to it.
Utsikt said:
Can you share the paper? We might already have a thread on it, or one could be made
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This study I glanced at refers to another study that supposedly found "Despite observing that Gulf War Veterans (GWV) with GWI who endorse PEM (~47%) have poorer health-related functioning and cardiopulmonary responses to exercise, we also showed that PEM is not uniformly present for all GWV with GWI at 24 hours post-exercise."

I haven't actually looked at either study in any depth (pretty tired right now).
 
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