Neither Lightning nor Process

After this evening having read Dagbladet’s Saturday Magazine (30.05.20), it’s been hard to fall asleep. Until now, I’ve avoided media and other health professional expertise in the field of ME, because I’ve often felt misunderstood, become provoked and got even more drained of strength/energy. But now I can’t avoid caring.

I’m better now than I was 7 years ago and have the strength to write and be more engaged. I just had to get well enough. I have a medical education myself as a nurse and midwife. About 7 years ago, my hell began with ME. I was desperate and bewildered. I had been on and off from work for a year, and my capacity at that time was very reduced.

I had heard about the Lightning Process and got in touch with a Coach. During a conversation with her, I became convinced that I was going to recover. She said those who didn’t recover were those who weren’t motivated enough and didn’t do the exercises well enough. She though I’d be a good candidate for LP. It would certainly not be on me and my motivation – I was completely sure of that.

To cut a long story short: My sleep was already poor at this point. After a 3-day course and 15 000 NOK lighter, I ended up not being able to fall asleep for 10 days, because the exercises and Lightning Process took all my energy.

I became motivated to continue, as despite no sleep at night I was still positive at heart. I really wanted to get well!

I was just to continue the exercises which in short meant that every time I thought I was drained of energy, worn out or exhausted, I should stand up, put my hand forward and say STOP! I should “stop doing ME”, whatever that means. I should do this at least 50-100 times a day.

After so many nights without sleep, I began having automatic, suicidal thoughts. I therefore had to contact emergent psychiatric services where I got medication for sleep and treatment. I had never had any mental health issues before. After I was able to sleep again and cleared my head, I realised that LP had made me much sicker than I had been aware of and I stopped doing the exercises, despite the fact that the therapist thought I should continue.

And here’s the crux: don’t LP-therapists know about PEM (Post Exertional Malaise) which is the cardinal symptom to ME patients? After this attempt with LP, I became bed bound for a year. Cognitive therapy and LP are two completely different methods and should not be compared.

Firstly, no psychologist or psychiatrist promise their patient that they will get completely cured from ME with cognitive therapy. They will also never claim that if the patients don’t practice enough, or don’t think positively enough, they will never get well again. And this is where the professional part comes in, the weight and integrity from qualification, which seem to be absent in this “process”. LP coaches don’t have any professional authorisation. Their coaching of ME is often based on personal experience followed by some training on LP, and then they start treating a very sick and vulnerable group. I think it’s scary that this is allowed. Even more frightening when doctors and psychiatrists are recommending this kind of treatment.

Cognitive therapy alone won’t make you recover from ME either, but you’ll get some tools to help cope better with the disease. When it comes to the claims about ME being psychological, what do they really mean? There are separate diagnosis within psychiatry, with among others anxiety, depression, PTSD, burnout and so on, and all of these can also cause fatigue, but are in no way similar to ME. PEM is what separates ME from psychological illnesses.