Hanne, 59

I am a medical doctor, and have had ME (triggered by a virus) since my mid-30s. When my eldest son underwent a medical assessment at the Rikshospitalet for the same disease in 2007, we were recommended LP by paediatrician, dr. Wyller, who did research into ME. LP had at that time recently been introduced in Norway. Dr. Wyller had (and still has) a theory that ME is due to a sustained stress response based on having a dutiful personality and he believed this course could make us recover.

I must admit that I had trouble believing that a psychosomatic approach based on changing thought processes could be the solution for us, but I felt a lot of pressure to “try everything”. I therefore somewhat reluctantly agreed that we would complete the course and try to put common sense aside. Part of the motivation was to also get first-hand insight into what this course was actually about.

We got admitted for a course in Oslo with an English coach in the spring of 2008, after first having signed that we were “willing to change” and having paid approximately 15 000 NOK per person. Both the signature and the high price were explained as necessary in order to achieve a good effect.

Even if I was a bit sceptical on beforehand, it was still a shock to experience what was actually conveyed on the course; with the power of thought everything was seemingly possible, even healing bone fractures! I asked a critical question, but was told by the course leader that I would have to leave, if I continued doing that.

I thought the actual procedure we were trained in was completely surreal; it was like being a participant in a religious revival meeting where the course leader commandingly announced that we “were” not sick, but “did” the disease, and that we were responsible for this. As in a sect we were initiated into the method of how to recover by changing our thought patterns and choosing “the life we love” instead of “the pit”, as we had been doing until now. We were forced to say this out loud in front of the others while making specific footsteps and a hand movement.

We were admonished that the method was secret and should not be shared with others.

From now on, we were to live as recovered and break with the past, tell others that we were healthy and avoid other ME patients and the Norwegian ME Association, nor keep ourselves updated on biomedical research. It was important to get rid of clothes and furniture in the house that reminded us of the previous illness. Each time we felt symptoms or felt signs that the illness was on its way back, we were to repeat the ritual. In this way, we would form new connections in the nervous system to replace to old illness-causing patterns.

At the end of the course we were asked to sign that we had recovered. (My son and I chose not to do so).

For me, just attending at 3 long course days was very strenuous and led to prolonged worsening of symptoms, but most of all, the experience itself was traumatic. It was especially painful to see the many seriously ill people who had managed to get there and putting their heart and soul into the scheme.

Several of the participants expressed that they had improved along the way, but in retrospect it turned out that no one experienced lasting improvement. I myself am still sick today, but I live better by listening to my body and with pacing, in other words the opposite of what the LP program requires.

As a medical doctor it was outrageous to witness the unethical nature of manipulating seriously ill people (and especially children) with cognitive impairment as part of the symptom picture, to activity beyond their limits of tolerance, with the risk of permanent exacerbation of the illness.

Constantly new research supports that ME is a serious multi systemic disease with a failure in energy production. It’s therefore completely incomprehensible to me that this course is still recommended to ME patients by both health professionals and other agencies. It really is unbelievable!!