Have you experienced being asymptomatic when not in PEM?

[Liface]

I have had ME since Spring 2022. During that time, I had five distinct periods of PEM, lasting from several to 40 days. These were mostly severe bedbound crashes.

No sooner than I recovered from these episodes, I was back to 100%, symptom free, and could live a normal life, even exercise intensely (at the beginning).

After the 40 day crash, I could no longer exercise as intensely but was still 100% symptom free and could lift weights twice a week. I maintained this state for 20 months.

Finally, I relapsed this past summer and am now bad enough that I do feel symptoms all the time.

However, pretty much my only symptoms are PEM and fatigue! I do not have POTS, hEDS, mast cell issues, or brain fog. I would love to find others like me and see if we can figure out our specific subtype.

 

[Creekside]

in that I experienced years of being generally unwell (what I suppose might now be considered my "baseline") before the first identifiable episode of PEM.

I might have had ME for 10 years before learning about PEM. I doubt that I could identify PEM from my early journal records, since I was looking for food responses. I eventually realized that I was consistently feeling worse the day after feeling well enough to go for some strenuous activity. I mentioned that correlation to someone, and she said she had the same problem. How long might she have been suffering PEM without knowing what it was? So, data about when people develop PEM is unreliable. That makes studies about when PEM develops difficult.

 

[DHagen]

So, data about when people develop PEM is unreliable. That makes studies about when PEM develops difficult.

Agreed, and I suspect it will remain so until such time as someone figures out what PEM actually is, should that ever happen.
I am also probably an unusual case in that, for over a year, I was actively looking for PEM. I was fortunate to have a pretty decent GP who suggest ME/CFS (well, "Chronic Fatigue Syndrome") pretty early on, but, for a long while, both she and I agreed that while most of my symptoms matched, I really didn't seem to have anything that looked like PEM. Until I did.

 

[nataliezzz]

However, pretty much my only symptoms are PEM and fatigue! I do not have POTS, hEDS, mast cell issues, or brain fog. I would love to find others like me and see if we can figure out our specific subtype.

My cognitive symptoms have never really fit with a lot of other people's descriptions of brain fog. At baseline, I feel like I can concentrate/process information OK for fairly long periods (I still need to take breaks though or I will risk triggering worsening of symptoms - not necessarily PEM, but same-day "dips" where I feel particularly exhausted/out of it), but when I'm overexerted/in PEM cognitive function is more of an issue; however, it feels more like cognitive activity is very exhausting/overstimulating, but I still can technically mount the cognitive faculties if I have to (rather than being technically cognitively impaired). But I do have issues with short-term memory at baseline (mostly forgetfulness: forgetting where I put things/things on my immediate to-do list/etc. - not things like forgetting what I just read though) and this is also worse in PEM. I've never had severe cognitive issues like word-finding difficulties and impaired autobiographical memory that some/many people with ME/CFS report though.

Do you have no cognitive issues/brain fog even when you are in PEM?

 

[Liface]

My cognitive symptoms have never really fit with a lot of other people's descriptions of brain fog. At baseline, I feel like I can concentrate/process information OK for fairly long periods (I still need to take breaks though or I will risk triggering worsening of symptoms - not necessarily PEM, but same-day "dips" where I feel particularly exhausted/out of it), but when I'm overexerted/in PEM cognitive function is more of an issue; however, it feels more like cognitive activity is very exhausting/overstimulating, but I still can technically mount the cognitive faculties if I have to (rather than being technically cognitively impaired). But I do have issues with short-term memory at baseline (mostly forgetfulness: forgetting where I put things/things on my immediate to-do list/etc. - not things like forgetting what I just read though) and this is also worse in PEM. I've never had severe cognitive issues like word-finding difficulties and impaired autobiographical memory that some/many people with ME/CFS report though.

Do you have no cognitive issues/brain fog even when you are in PEM?

It depends on how we define cognitive. In terms of intelligence and general brain function, I am very close to what I was before ME at all times. No memory issues.

However, my tolerance for certain things, like screens and conversations, drops while in severe PEM. I feel overwhelmed and have to remove myself from the situation.