The best thing I have done is to say: no way will I accept that my daughter will just lie there and suffer indefinitely, without us being able to do anything

Anxiety. Fear of the future. Sorrow. Insecurity. About three years ago, I did not know much about what these words could mean. We went to Greece on autumn vacation as a regular family of five in September 2017. A week later we were no longer a regular family, we just did not know it ourselves yet.

I was a mother with ME and two children sick with ME – There is hope!

I wish someone would have given me the knowledge that I have today, that someone would have normalised my condition 13 years ago and said: “You’ll be fine. We have a support network that will help you get back on your feet.” Instead, I was left alone, left to stumble through an overwhelming amount of advice on what to do when you’re a CFS/ME sufferer. It cost me 13 years of my life and my children missed out on their teenage years. At this conference organised by Catosenteret rehabilitation centre, Anette tells her story. It’s a story that touched many people.

Emil learnt to control his focus by himself, and then things improved very quickly

Today Emil is a happy 18-year-old. He is in his last year of upper secondary school and is active in sports, which also includes coaching younger athletes. He has passed his driving licence and found a girlfriend, and as for what we, his parents, say and think, he cares just about as much as he ought to. This hasn’t always been the situation, however.

Our daughter felt that she was more in control over her own situation, that she could now play an active part in her own recovery

Our daughter contracted ME when she was only ten years old. We vividly remember the despair we felt as parents; that her life was put on hold for one year; the worst-case scenario that she would become just another number in the queue at the national welfare center; a bedridden teenager hibernating behind blackout curtains in a dark bedroom. Luckily, we managed to find a way out of the nightmare.

This illness will last for a long time. And why is that? Because I am already prepared to die – inside

To Mammi…

The infection came suddenly – like a bolt og lightning out of the blue. The Chronic Fatigue Syndrome, however, came tiptoeing, slowly but surely. It came to take away from me everything you might call an identity. And it succeeded. In the end I was no longer myself. I “was” a fatigue syndrome.