I thought the PEM duration work by Lenny Jason was incredibly useful. I'm not sure about the rest. To me, what we really need is an instrument that researchers can use to identify if people have PEM as it's the cardinal symptom of this disease.
I suspect that's not going to happen unless we do it, or initiate ithere.
This is what DecodeME used in its questionnaire, developed by people who live with the illness because there was nothing decent out there. I think it's pretty good, and more useful than the questionnaire discussed above to identify people who do have pem.
Symptoms after effort or activity
12. In the last 6 months, what happens to your symptoms after you do more physical or mental activity than usual (exceed your energy limit)? If you pace your energy, we want you to think about what would have happened if you didn't. Please only choose ONE answer.
My symptoms (such as pain, fatigue or feeling out-of-sorts) get worse, or I get new symptoms, and this reduces how much I can do
My symptoms either stay the same or improve (Skip to Question 14)
13. In the last 6 months, after you have done more physical or mental activity than usual (exceeded your energy limit), how long does the change in your symptoms usually last? If you pace your energy, we want you to think about what would have happened if you didn't. Please only choose ONE answer.
The change in my symptoms lasts a long time, which can be more than 24 hours
I bounce back straight away or my symptoms don't last very long given the effort I just made
I wonder if the final question, which uses my italics need more guidance. I’m concerned that exertion intolerance, seen in many illnesses after physical effort, would be captured by this. The Lenny Jason date suggested 12 hours would be a reasonable minimum, but we at least need to replicate that and There is always a danger with any threshold of losing milder cases.
