Living with ME/CFS

Managing ME/CFS is all about finding your limitations, balancing activity and rest, and then gently increasing at a rate agreed with your therapist. At the beginning, this means trying a very small activity for 5, 10 or 15 minutes, then resting. In some cases, 'activity' can mean simply sitting up in bed or having a short conversation.

Everyone's energy reserves – their ‘batteries', if you like – are different, and yours may even vary from day to day. The most important thing is to know your limitations, and to stop and ‘recharge' before you use up all your energy and ‘crash'.

  • The Functional Ability Scale is an important tool to help you work out where you are with your ME/CFS.
  • Although this website talks a lot about health and education, we know your social life is very important to your well-being too.  Check out our helpful notes on friends and relationships.
  • On a practical level, our page on benefits may also be useful for you and your parents or carers.

What parents need to know

Dr Esther Crawley from the School of Social and Community Medicine speaks about what researchers currently know about ME/CFS  in children, and provides top tips for parents looking after them - including some valuable top tips.

Listen here: Esther Crawley talk, 22 November 2012

"I tried to push myself and do a lot more than I was really capable of. It was a natural reaction for me, but now I realise that it wasn't brave. If you do that, you end up feeling worse than when you started.

"I then learned to manage my activity and tried to avoid the urge to complete a task in one sitting. I alternated small mental tasks with small physical ones because I soon learned that it was as important to rest my brain as it was my body."