On October 29th, 2021; The National Institute for Health and Care Excellence, NICE, published new guidelines for ME/CFS. The guidelines are clear:

“Do not offer the Lightning Process, or therapies based on it, to people with ME/CFS.”

There is a lot of secrecy around the Lightning Process (LP) and not many are aware of what actually happens at an LP-course. Below is the English version of an article I wrote in July 2021 which describes an adolescent’s experience:

Treating children with the Lightning Process?

In 2011, the Norwegian public broadcaster NRK wrote about a 13-year-old who attempted suicide after having taken a course in Lightning Process, NRK: Attempted suicide after an ME course. At that time, the Lighting Process instructors in the company “Aktiv Prosess” had had more than 250 children and adolescents attending their courses:

It was Professor Vegard Bruun Wyller who informed the family of the 13-year-old about the Lightning Process. Wyller still recommends LP to children and adolescents with ME.

June 7, 2018: Prof. Vegard B. B. Wyller gives a lecture at the Catosenteret. The center offers rehabilitation to children and adolescents with ME after a referral from public health service.

In 2018, the Norwegian Directorate of Health and the Norwegian Consumer Agency classified LP instructors as practitioners of alternative therapy. Since 1969, the World Health Organization, WHO, has classified ME as a neurological disease. The founder of Lightning Process, Phil Parker, on the other hand, believes that ME is something you «do» and that when you are doing the disease you are in the pit. Listen to Phil Parker:

The Norwegian psychologist Bente Dahl compares the method with conversion therapy; charismatic congregations’ healing of homosexuals: Nordlys (via ME Nytt) 6th October 2010: LP and healing of homosexuals.

James C. Coyne, PhD, about a Lightning Process study published in 2017:

“Christine Fenton, a retired Deputy Head of two high schools in the UK notes she was responsible for child protection in those roles. She expressed this concern about the basic conflict of Lightning Process and tenets of childhood protection:

“LP participants are directed to not talk to others about it – keep secrets – to report positively regardless of their internal view is appalling to me. Child Protection has a key tenet ‘secrets are not ok’ – if an adult tells a youngster to keep a secret it is a form of control & creates an environment in which abuse can occur more easily.””. «Parents should have been warned about unprofessional providers in Esther Crawley’s SMILE trial»

Experiences

It is unknown how many children and young people who have participated at LP courses since 2011. In 2020, Norwegian father Jørn Bjørkli shared his experience from when he let his son take part in an LP course:

«As a parent, I can unfortunately not say that I am proud of having paid NOK 15,000 for my son to participate in the course. Since he was a minor at the time, I got to be an observer for all 3 days. As parents, I think most people do what they can to help when their children get sick – and so did we.

We had little knowledge about ME and tried to find information from various professional institutions (hospitals, The Labour and Welfare Administration (NAV), GPs, etc.) but no-one had specific knowledge about what was appropriate treatment. At that time, very little research had been done and we found the most «reasonable» answers from listening to Professor Vegard B.B. Wyller, who believes that «ME is due to a hypersensitivity in the brain, where signals from the outside world are overinterpreted because the nervous system is in a constant state of alert.»

A professor who is a specialist in the field should certainly be worth listening to and cognitive therapy was very relevant as treatment at the time. Many of those we spoke to had heard of the Lightning Process (LP) (but not participated!) and highly recommended it.

In dialogue with the instructors on the LP course, we got the impression that it was difficult to be admitted to the course. Both because of few places, but also because of strict admission requirements. The most important thing was that the participants really wanted to get well – something that was a given to us, but which apparently wasn’t a given for the instructors.

In addition to application form in writing – with strong emphasis on whether the applicant himself wanted to recover – and a subsequent interview, there was great anticipation on our part about whether or not our son was «qualified». As sick as he was, it wasn’t certain that he was able to express how strongly he really wanted to get well, but we were very happy when it was confirmed that he could take part.

We were told that the course made the participants recover from ME, but it required the participants’ own will and efforts. With my son’s strong will and great courage, we were confident that he would go all in.

When you are a caretaker trying to help your child, you try everything, but it was difficult to comprehend how the illness we had observed for some time could be «cured» by a 3-day course. But what damage could it do? We had read Live Landmark’s book and it all seemed innocent enough.

As a therapist with additional training in cognitive theory, I was confident that cognitive therapy does not cause side effects – as it is all about guidance and support in the use of method – not pressure and coercion.

But the Lightning Process turned out to be something completely different; unskilled people who had taken courses to become instructors in methods that really were all about pressure.

«Now you are doing ME!» is hardly the best message to give to a young person who wonders why he has been affected by an unexplained, painful and severely limiting disease?

«If you don’t get better, it is only because you don’t use the method correctly» – and thus it was his own fault that he suffers from a serious illness!

It was a scary experience for me as a parent. 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 a LP course is one of the biggest mistakes and has given me a lot of guilt. I consider exposing my child to LP as a form of abuse, sadly. «

(This is shared with permission.)

This is what a 10-year-old in New Zealand experienced:

Perhaps the health authorities should have a closer look at this practice? Is it ok for health professionals to recommend children and adolescents to be treated with the Lightning Process?

Written by

Nina E. Steinkopf

Former HSEQ-director

Now: ME-patient and writer

Updated March 27th and April 17th 2022

You might also want to read Prof. Brian Hughes article: “Self-styled medical leaders defend “neurolinguistic processing” as legit treatment for ME/CFS“