I have attended an LP course.
I was one of those who “recovered” after the course, and I was totally converted.
Four years later I developed a severe depression. In order to get better from the depression, I had to reject all the LP way of thinking that had completely distanced me from reality and caused a sense of guilt that I still haven’t got rid of.
I gradually started to get a different view of LP, and talked to my parents about it. They told me they had never perceived me as recovered, because after school I fell asleep until the evening, and my father had several times had to carry me down the stairs from the bed to the bathroom, while I was almost unconscious. However, they had accompanied me on the course, and knew that believing you had recovered was an important part of it, so they wanted to let me have a try.
I remember struggling a lot with school assignments and that I once had an episode at school. That was while I was active in the school theatre and worked a lot. I was lying on the floor and couldn’t move. Several students gathered around me and I remember I was really embarrassed. I don’t remember more, but I think my father had to come and get me.
At school I was known to be absent minded. If something was left forgotten somewhere, people assumed it was mine. In retrospect, I understand that this was probably due to brain fog.
After I developed severe ME as a result of the flu, I have had epilepsy like seizures and paralysis. Today I listen to my body. I am positive, but other than that, I don’t use any LP techniques. I do pacing and that has helped me gain more control over my symptoms.
If there’s one regret I have in life, it’s not getting started with pacing right away. Then perhaps I could have had a mild degree today. Had I not clung to the LP mindset to such degree, I might have learned to accept the disease and not feel so ashamed.
LP was an unnecessary detour and it could have gone really wrong as I was very suicidal at one point.
I am completely in favour of adults having the opportunity to choose to try LP, but children and adolescents shouldn’t be thrown into this, particularly not by health care workers. Without experience and knowledge, you are easy to influence. I gulped down everything that was said on the LP course, and had to pay the price afterwards.
– Please give course participants, particularly children and adolescents, information about the risk and tell them, again and again, that they are NOT to blame for their own illness. It’s so important!
Since there are no biomarker, we have to remember that ME is practically a diagnosis containing several different kinds of fatigue conditions, where some certainly may benefit from LP. The problem arises when one doesn’t acknowledge the nuances. By not acknowledging patients’ negative experiences with LP, and only tell the positive stories, one hinders progress in research which in the long run can increase the understanding of ME and hopefully make more people recover.