I got ME after mononucleosis in 1996. The diagnosis ME (G93.3) was made by a specialist and according to the Canadian criteria. The degree of ME before the course was mild to moderate. I kept the level mild by paying attention to my body.

I took the course in England in 2007 and on the course we weren’t allowed to ask questions about anything. Not allowed to talk about the disease or how we were doing with other participants. Not to talk negatively about LP. We sat in a circle on wooden chairs.

I got yelled at when I once was about to faint, and when I asked to go to the bathroom because I had to vomit. I was “negative and ruined it for the others!”. And I did it to myself, just had to say STOP (and hold out my hand) and stop vomiting.

I had to sign that I didn’t do ME anymore. The coach didn’t accept the answers when I ranked from 1 (bad) to 10 (best) and always pushed up. This was in front of the group, so that I felt pressured to say better to make her happy, and not to ruin it for the others by being negative.

I was rather ill after the course, but feeling optimistic! Now I was finally going to get well. I did the method at home, ignored the symptoms as we should, and my health declined.

I became bed bound, and felt ashamed and guilty.

I was told by the coach that if I did not get well/better, it was because I wasn’t doing the method correctly, still did ME and did not WANT to get well. It was my fault. Eventually it ended with a collapse where I stayed lying on the floor for a long time, had peed myself, and could not get to the bathroom myself, or to bed.

I was so broken psychologically that I was suicidal. This was after all my own fault.

They said so. Luckily I was found and got help. I now have moderate to severe degree. On the worst days I lie for 24 hours and can only manage to go to the bathroom and eat a little.