Does this look like PEM to you?

[jpcv]

I apologize for long post... if you decide it's too long to read I will understand!

I am mildly affected: on average I walk 4500 steps per day and am able to do computer work 6 hrs per day as long as I don't do much else in life. No cooking, minimal dish washing, no other cleaning.

In August I started meticulously tracking everything I did in a day and how I felt - OK, tired, very tired etc. From this I calculated an activity score (how much I did in a day) and fatigue score (high score = high fatigue) for each day.

What I got was this graph:
blue = activity score (the higher, the more active I was)
red = fatigue score (the higher, the more tired I was)
View attachment 23790

As you can see, sometimes I do a lot (for me) and don't feel as much fatigue and sometimes I rest all day and am very fatigued. Well, usually I rest all day because of the fatigue
Also I had 9 very good days with relatively little fatigue in the middle of the graph. In that time I was taking a recovery mix for bodybuilders and will definitely be trying it again!

But what happens if I move fatigue two days to the left? That is, what if I compare how active I was to how much fatigue I felt 2 days later?
blue = activity score (the higher, the more active I was)
yellow = fatigue score two days later (the higher, the more tired I was two days later)
View attachment 23791

To me it looks like in this graph the yellow line moves more in sync with blue (fatigue moves with activity) than the red line did in in the previous graph. When blue line goes up, yellow line tends to go up as well and vice versa. At least much more often than the red line.

My fatigue feels so random to me, I never know if I'm going to feel OK or terrible the next day. But in the above graph I think I see a PEM delayed by 2 days. Well, mostly. Sometimes I am tired, but still have things that need to get done so on those days activity and same-day-fatigue (red line) would both be high and the peak in yellow line would precede the peak in blue line by 2 days.

What do you think? Does it look like my fatigue is delayed by 2 days or not? If you think there's no correlation, please tell me so

Edited to add:
The reason for logging activity and fatigue was mainly because how I feel fluctuates so much that it's hard to know whether a new supplement is doing anything (unless it would have a major effect). Also, I wanted to be able to compare how I feel now to how I felt six months ago and I didn't really get a good feeling for it by reading my symptom diary. I guess I'm more of a numbers person. It was not to asses PEM, I just thought once I had the data, let's see whether my fatigue is less random than I thought.

great graph.
36 to 48 hrs is the time it takes for me to go from a stable tired-but-ok condition to pem/crash following exertion.

 

[Mithriel]

While PEM is usually taken as the cardinal symptom of ME - we get worse with exertion, in some ways the real hallmark of ME is the delay in feeling bad.

We do something and feel fine at the time but then two or three days later we collapse. If I feel exceptionally bad I can usually go back three days and see what I did that was too much.

This is one of the aspects of the illness, common knowledge at the time, that was lost when CFS was invented.

The CPET testing is the first research that explains this curiosity. Day 1 we feel fine but then day 2 we can't do so much but we don't realise it, then day 3 we have no resources left.

 

[happy]

While PEM is usually taken as the cardinal symptom of ME - we get worse with exertion, in some ways the real hallmark of ME is the delay in feeling bad.

We do something and feel fine at the time but then two or three days later we collapse. If I feel exceptionally bad I can usually go back three days and see what I did that was too much.

This is one of the aspects of the illness, common knowledge at the time, that was lost when CFS was invented.

The CPET testing is the first research that explains this curiosity. Day 1 we feel fine but then day 2 we can't do so much but we don't realise it, then day 3 we have no resources left.

Yes! It's like first you have to buy the goods, only when you already carry them out of the store do they tell you how much they cost.

I had two day CPET test two weeks ago. The first CPET wasn't bad at all... I was more tired than on average day, but not exhausted. Also no other symptom flare ups except waking up in early morning hours with a weird hot-cold feeling on skin, like one would apply IcyHot on it.

My legs didn't even feel heavy the morning before second CPET, which is weird, because they get heavy even if I do gentle leg exercises which are infinitely easier than CPET. Only after the second CPET did the fatigue & co really kick in! I suspect that 24 hours was not long enough for my PEM to start, but I definitely felt it after the second CPET. I am still recovering.

 

[Mithriel]

That is very interesting. I think this sort of thing is going to be of real help to us. I hope it you recover soon.