I have had ME for 20 years, with relapses and remissions. I have had good years when I have been able to work. I have also had very bad months when I have been housebound. I had a very severe relapse in October last year (2014) and in the 4 months since I have had ups and downs, but had managed to increase from being bedbound to being housebound and being able to do basic essential living tasks. Two weeks ago I thought I had improved to a level where I could leave my flat every day and do activity. I have to admit that in the previous weeks I had not gone out of the flat without help on any single day. In the week that I felt good I started clearing my Mum’s house (a long story, but basically my sister and I have to sell it). On one day I was going up and down stairs and filling my car twice with junk to take to the waste tip. Last week I suffered big payback, and have been feeling really ill for one and a half weeks now, stuck in the flat and suffering with massive symptom flare. I am trying to re-establish a baseline of washing, cooking and sleeping! I feel a bit stupid after suffering from ME for 20 years and feel that I should know how to manage this illness better. I struggle with reining in my activity when I start to feel a bit better. I go into overdrive. And then I suffer for it. I overestimate how well my body is, because I can actually do an activity without suffering payback straight away. For me the post-exertional malaise (PEM) is very delayed, perhaps by as much as 1 week. I worry that I keep falling back down to the same level each time I try to do more activity. I also worry that I may cause more serious long-term, permanent damage. I am hoping that other people who have had moderate/severe ME and have had relapses might be able to offer some advice on how to manage energy. Is delayed PEM of 1 week “normal”? How do you monitor what you can actually do if your body doesn’t give you the right warning signals when you are doing it? In the past I have got over my relapses much quicker i.e. 6-9months. I suspect that I have to re-evaluate and assume that this is a much longer process of (hopefully) improvement compared to the past. Does anyone else have this experience of their ME/CFS?