Hi Rabbit, Yes you are right. I get ill when and I am run down/stressed/overdoing it, then get a virus, still even now, I never "grew out of it" like I was told. Its always under those circumstances, still is. Thats why one of the names for it is post viral fatigue syndrome (as well as CFS and CFIDS).
Back then I was a very active person, doing lots of sports (rugby and swimming), loads of after school activities (voluntary work, orchestra, D of E, youth theatre etc), had taken 2 GCSE's the summer before and was preparing to take 12 more, so I probably was tired and run down and maybe a little stressed, without even realising it, then I got a virus and that was the catalyst.
What is really imperative is to try and strike a balance between rest and activity. Its very hard do but crucial in management. Too little activity and you are never going to recover (if a well person sat in a chair for a year they would struggle to walk afterwards) but too much activity and you make yourself worse. I always used to say on days when I knew I had done too much that I would pay for it in 48 hours! It must be so hard with one so young to get that balance though.
Also, family support and love was key, it is imperative to keep your morale up, as depression is so easy to fall into and makes ME worse. My parents also got a puppy, which was fantastic, something to give me joy everyday and a bit of gentle exercise.
I also saw an osteopath reguarly which helped keep me mobile first time round. I couldn't afford to do that second time and I did notice the difference. I am sure physio or accupuncture would probably have similar results.
I think you may get more help from the NHS than I did, 10 years ago it was only just being regonised by the GMC, in fact I was 3 months into my ME before it was an official illness. The medical profession didnt really have a clue. It may be a little better now but I would still say arm yourself with as much information as possible.
I am not an expert, particularly with young children, all I know is my personal experience, but there are websites out there as well and support groups (I have never actually joined them but they are a good source of information, for example Action for ME). I think they key thing for me has been learning to live with it through my adult life. I was told once I was "recovered" (which took about a year) that I would not be ill again, and some people aren't, but I have learnt to my cost that I can and do get ill still. Had a major relapse at Uni which took 3 years to get over and I feel the symptons now and then when I am run down and ill, I just make sure I eat well, sleep well and rest if I in any doubt over my health. I live with a policy of avoiding getting ill at all costs, any sign of a cold and I am off work till I am recovered!