I became ill in 2008 and was diagnosed with ME in 2010, mild degree. From then on, I remember media reports about a miraculous treatment that made severe ME patients recover.
On closer inspection, this took place in England and cost a staggering 50 000 NOK.
That was out of the question. Besides, I thought this was probably something temporary and that it could pass at any time.
A few years later, in 2016, Landmark’s book “Wake me up when it’s over” had found its way to me through an acquaintance.
The book was easy to read and promised a miracle I had hoped for for eight years. The book was about Landmark’s course of illness and how she recovered with a three-day course.
She was sicker than me. If she could recover from ME with LP, so could I!
Then I discovered to my great delight that the course was held only an hour’s drive from where I live.
Not only that, it cost “only” 16 500 NOK.
That was a small price to pay for me to finally be able to live a life without ME. I filled out a form in order to participate, and gladly confirmed that I would be uncritical of the course content, and that I was motivated.
I really was. This was huge, I was going to get well again!
During the course days, there was a lot of focus on how self coaching could make new tracks in the brain, which in turn affected one’s physiology. To turn passive language into active.
ME is not something I have, it’s something I do. One by one we stood on the floor and said STOP, chose the life we love over the pit. This was so simple it had to be something I could manage.
Pondering, rumination and perfectionism were some of the things that caused exhaustion and several symptoms.
Think and behave like a healthy person. Stop checking your body. Fake it till you make it. Make use of the placebo effect, which is the body’s way of healing itself.
All of this sounded perfectly fine to me.
We were to figure out in which ways we were perfectionists, and share with the group. We could now just forget about any thoughts about activities and food ingredients we couldn’t tolerate.
We could eat what we wanted, participate in whatever activity we wanted.
The disappointment wasn’t big when I got PEM after the course. After all, I had just learned the method.
And if I did as we had learned, I would get the full benefit of it after a while, as long as I did the exercises often enough. We were prepared for this by the course leader.
Shortly after the course, I discovered that the stop-method didn’t work very well on sleep problems. Eventually I realised that it didn’t have effect on the other symptoms either.
I simply could not get rid of any of the ME symptoms by using stop-technique and my thoughts.
The placebo effect was absent.
The feeling of joy and wellness I was supposed to imagine, was also absent.
There had to be something wrong with me.
I blamed myself and felt I had failed. Surely the other participants had succeeded.
In connection with the course, we got to join a Facebook group where we could support each other and make sure we stayed “on track”.
I followed the group for a year and cheered others on, at the same time as I was blaming myself for not getting it right.
We could only write positive posts in the group, so I refrained from posting anything.
I avoided making direct contact with any of the others on the course, for fear of hindering their recovery.
At the course we learned that it was crucial not to think negative/be critical of the method. That could ruin everything.
Even though I had no effect from the exercises, I continued with them for six months after the course, before giving up. The hope of a life in a healthy body was thus shattered.
Now I feel stupid and gullible that I didn’t see through this from the beginning. However, I’m relieved that I didn’t deteriorate beyond PEM after the course.
The course leader discouraged me from having contact with people who had doubt about the method, particularly ME groups on Facebook. They could be critical of ME, and thus adversely affect recovery.
At that time I didn’t know of these groups.
It belongs to the story that before I joined ME groups on Facebook, I believed ME was psychosomatic.
Every time I got PEM, I was convinced that it was because I though or felt negative or wrong in some way. After all, I did have good days when I was sure I was “normal” again.
But the symptoms always returned, to my great despair.
It was only when I read about the biomedical research, as well as other’s perceived symptom picture shared in the groups, that I really could recognise myself in what was described.
The information I have received through these groups has helped me to understand, accept and live with ME.
My thoughts on the Lightning Process
There’s been a one-sided positive media coverage and secrecy on what the method is all about, and far too little focus on how many people experience deterioration.
This can lead people to believe that they will recover. The miracle stories give hope, which you then pay dearly to get crushed.
I think LP instructors probably know that many participants deteriorate as a consequence of the course. I assume they keep up to date on biomedical research.
It will surprise me if they didn’t. After all, they claim to be holding the key to recovery for people with this diagnosis.
It astonishes me that they really believe that LP is able to cure physiological, measurable “errors” as for instance failure in cell metabolism, by making new tracks in the brain.
It also astonishes me that they have the conscience to push this course on ME patients if they know the disease mechanisms, and not least the ongoing debate on the mixing of ME and burnout syndrome.