You do whatever you can to help your children.
As a parent, I unfortunately cannot say I’m proud of having paid 15 000 NOK (roughly $1700), for my son to have been on the course.
Since at that time he was a minor, I got to be an observer for all 3 days. As parents I think most do whatever they can to help their children when they get sick – as did we. We had little knowledge about ME and tried to find information from various professional fields (hospital, The Norwegian Labour and Welfare Administration, GP and so on) and no one had specific knowledge about what was appropriate treatment.
Back then there was very litte research and we found the most “sensible” answers by listening to professor Wyller, who believes that “ME is due to a hypersensitivity in the brain, where signals from the outside world are over-interpreted because the nervous system is in constant alert”. It’s worth listening to a professor who is a specialist in his field, isn’t it? And cognitive therapy was very relevant as treatment at the time.
Many of the people we spoke to had heard of Lightning Process (LP), (but without participating!) and highly recommended it. During dialogue with instructors from the LP course, we got the impression that it was difficult to join the course. Both because there were few places, but also because of strict admission requirements. The most important was that the participant wanted to get well – which was a given to us, but obviously not a given for the course leaders.
In addition to a written application form – with a strong focus on whether the applicant himself wanted to recover – and a subsequent interview, there was great anticipation from our side whether or not our son was “qualified”. As unwell as he was, it wasn’t certain he’d been able to communicate just how strongly he wanted to recover. We were very happy when receiving a confirmation that he could join.
Willingness and effort
We were told that the course made people recover from ME, but it required the participant’s own will and effort. With my son’s strong will and great courage, we were confident that he had what it took. When you are a next-of-kin and try to help your child, you’ll try everything – but it was hard to understand how the clinical picture that we had followed over time could be “healed” by a course over 3 days. But what harm could it do?
Live Landmark’s book had been read – and it all seemed innocent enough. As a therapist with additional training in cognitive theory I was confident that cognitive therapy doesn’t cause side effects – as it’s all about guidance and support in the use of method – not pressure or coercion.
But the Lightning Process was something completely different.
It was unskilled people who had taken a course to become instructors in methods that were really about putting pressure on people. “Now you’re doing ME” “Now you’re doing ME” is hardly the best message to a young person who wonders why on earth he’s suffering from an inexplicable, painful and life-limiting disease? “If you don’t improve it’s only because you’re not using the method correctly” – and with that it was his own fault for suffering from a severe disease!
It was a frightening experience for me as a next of kin. How bad was it then for him who had to go through this?
We have made many mistakes as parents – because we wanted to help.
Sending him on an LP course is one of the big mistakes which has caused me a lot of guilt. I regard exposing my child to LP as a form of abuse – unfortunately.
Today there is far more research within the field of ME. Professor Wyller’s understanding of the clinical picture – and those who follow him – are in the minority both in Norway and in the rest of the world.
I try to stay up to date on the research and seek updated information both from Norway and abroad. ME is a disease that prevents many of the sufferers from speaking up – and therefore it’s important that we who can speak up – do.
I believe in research – and I believe as a starting point that all research into ME is a good thing. Nevertheless, I am opposed to research funds – earmarked for research into ME – being used to further exploration of LP. Simply because I think LP is harmful and even with potentially very large and severe side effects – and that participants may feel pressured to join (by a doctor, a family member, The Norwegian Labour and Welfare Administration or others who influence their decision).
Happy for everyone who has recovered
Every day I feel happy for those who have recovered from ME. I am more than happy to listen to stories from each and every one of them. I believe there are lots of and useful things to learn. But I am also terrified that ME patients will be sent off to activities that potentially can worsen their health. For those who have recovered by the use of LP – I congratulate them. But for all those who deteriorated I want to express my support and sympathy. We will continue to work for more research into other forms of treatment. You deserve that!
The text has previously been published, in Norwegian.