I attended a course in the Lightning Process about 10 years ago. I had read articles in various magazines where ME patients claimed to have recovered with a three-day course. After my supervisor at the Norwegian Labour and Welfare Administration mentioned it during a meeting, I chose to give it a go. I paid for the course myself. I was called for an interview on the phone to see if I was motivated enough and receptive to the process. I got approved to participate.

I had been diagnosed with ME a few years earlier, after a thorough medical assessment in hospital. Here I tell my story as I remember it:

Three day course in the Lightning Process:

I remember we were given a number of paper sheets with different optical illusions, and the instructor explained how easily the brain was fooled and that we can’t always trust the information that the brain interprets. There were pictures of crooked lines that were not really crooked and circles that looked as if they were moving on the sheet, which they obviously didn’t. There were many examples of how the brain misinterprets information.

This was an effective way to start making us doubt in ourselves. Am I fooling myself? Or rather, is my brain fooling my body? And if the brain is fooling me, how can I know what is right? Is it my fault that I’m sick because I’m misinterpreting something? Can’t I trust my brain? Then what can I trust?

Now the brain has gone into total confusion mode. It shouts “there are no thought pattern tracks here” show us the way!

Fortunately the instructors move on to the body’s functions and to the nervous system. We learn about how the sympathetic and parasympathetic systems affect the body and how negative though patterns “get stuck in the head”. Pictures and explanations. The instructors appear knowledgable and convincing. Now we are really getting carried away.

After all, the self-confidence had suffered a slight setback after the optical illusion game earlier. Now we nod in agreement and see the light. Sure, this is logical. Perhaps I’m not that stupid after all.

Furthermore we get told that we’re not sick, we do sick by letting these negative though patterns and subsequent bodily responses rule. We all had to say out loud “I DO ME” in turn and in plenary, for it to be real enough for us to really take it upon ourselves. “I DO ME !!”

In order to change this we have to “Do healthy”. So easy. So banal.

Fortunately the instructors emphasise that they have faith in US. The know we can do this. YOU CAN DO IT! They have done it many times before, and share many stories about success. They are our solution, they know the technique, and they will teach it to us. How lucky am I?! We are all excited and eager to start learning the process.

In the break a next of kin who had asked a number of critical questions (whether it was simply brainwashing) was expelled from the course. She was not good for the rest of us. A disruptive element in the assembly. She left the room in silence. We did not care. We were expectant and excited about what was to come.

So then we get an introduction to this grand process. We are told that if we do it correctly, it will change our thought patterns. And if we do it often enough and carry it through just as they say, we will have the life we love, in other words be recovered, which was why we had come there. The instructors emphasise several times the importance of going “all in” and to carry out the process often, regardless of time and place. It is OUR RESPONSIBILITY. So then it’s just to go ahead and start practicing the process.

Before the end of the day, we are also encouraged to call friends and family and tell them we have recovered. HURRAY! The more people we told, the better. Preferably loudly and with enthusiasm.

The next day begins with the question; How many did you talk to?

I have people who are still offended that I lied to them. I can understand why.

Practice. Practice. Practice.

Bring out a negative feeling, a symptom or start with a body scan. Now I’ll really get started:

Shout out loud STOP at the same time I stretch out my hand and may also stomp my foot hard to the floor
Take a long step to the side, be determined
Make a choice: Do I want the life I love or the pit??
I choose the life I love! (I exchange feeling/symptom with something positive as laughter, joy).

And hey, I’ve chased the symptoms/feeling away and I AM AMAZING.

Over and over again, until I can feel it sit.

On the last day, all participants complete the process “from the podium” in front of everyone else, and we all say that we are now completely healthy again. If we’re not able to do it correctly and feel symptoms, we have to do the exercise one more time, only better, with more commitment and more stomping, more sound, more movement.

Next of kin who were present, were told to treat us as normal, as perfectly healthy. No special treatment here. If it’s 1 kilometer to the car then you better start walking!

We were told that if any of our loved ones were critical of the method, we should distance ourselves from them, for our own good. By all means avoid critical questions!

Stand up for the process, whatever it may cost. It won’t work if you don’t do it well enough. Try again!

If you failed don’t think that you have failed. You just haven’t made it.

In other words; You. Have. Failed.

(Ref. Don’t think of a pink elephant… and everyone thinks of a pink elephant)

Then it was just to go home. Do the process. Take responsibility. Be recovered.

In order not to fail on this “recovery journey” (which was no recovery journey as I already had recovered), I signed up for a course in NLP that went over a few weekends close to where I live. The course was set up in a serious way, with a lot of homework, treatments and a final practical and theoretical exam. Parts of LP is built upon techniques from NLP (Neurolinguistic programming), so I thought this would be a good starting point.

People say that using NLP can cure for instance allergies. There were many who tried, but I have yet to see a case where it actually succeeded. Such techniques had on the other hand good effect on conditions such as phobia and anxiety.

In retrospect, after having seen it from both sides, my conclusion is quite clear: You should be VERY certain whether it’s a psychological or physiological condition you are dealing with before performing such a form of manipulation (as LP is) on clients.

After the course was over, I went on a job interview and said I was completely healthy. I got the job.

It was a part-time position, mind you, but that was what I wanted.

I worked some and was on sick leave some. But I was perfectly healthy, everyone can be on sick leave from time to time. Life happens. “I chose to DO HEALTH”.

After a year and a half, my employer and the Norwegian Labour and Welfare Administration encouraged me to apply for partial disability.

The following year I got more or less downgraded to get the mail and make coffee at work. My head could not process the information and tasks I had.

I got visual disturbances, had occasional blurred vision and occasionally loss of depth vision. I stumbled up staircases as if I was drunk, because I couldn’t see where the steps were.

Whenever I had the opportunity to, I slept and rested, which was most time outside of work. I had heart arrhythmias.

I remember well one morning I woke up with heart palpitations. I was home alone with the children and they were going to school. I woke up the oldest child who was around 13 years old as I ran out the door and rushed to the emergency room. “Wake up! I have to go to the emergency room, my heart is going crazy. I’ll be back soon, bit I don’t know how long this will take. Remember to lock the door when you leave!”.

I was in the emergency room for a few hours for observation. They had to see that my heart rate normalised before I could leave. When I got home, the kids had fortunately gone to school, so perhaps the incident hadn’t scared them too much? It was yet another day off sick from work.

Drop in blood pressure was common and I lost track in the middle of conversations. Words got weird and I had trouble with pronouncing sentences. The hairbrush got called “the thing you use in your hair”. I babbled.

I had to stop driving my neat little scooter to work, because I could no longer carry the helmet. My head and neck couldn’t handle the weight of it.

You might be thinking – shouldn’t any alarm bells go off by now?

Oh no, I chose the life I love. I wanted to feel the wind in my hair and feel the rush of the cars as I manoeuvred my way through the city traffic.

So easy. So fatal!

I was eventually told by my employer that I had to be realistic and accept my illness. I was furious and there were a lot of heated discussions at work.

Anyway, I became 100% disabled.

Of course I could have continued with choosing to call myself perfectly healthy, even as 100% disabled. But wouldn’t that just be fooling myself? I choose to listen to my previous employer’s words, accept my illness. Stop pretending. Be honest.

It’s been a few years now.

I have been ill for almost 20 years.

I am not ME, but I have ME.

I have tried too many times, I have exhausted myself too many times.

Now it’s the remains that need saving…

My dream is to be there for my children if they ever have children of their own, and to spend vacations with the family. I can’t do that now.

My life has been reduced to 4-5 trips a month to the shop. I’m mostly homebound. I can do a bit of light gardening for short periods as long as I rest well in-between.

I use a wheelchair when my legs are burning and the neuropathic pain is at its worst, or when the muscle and joint pain puts me out of action. I get intense headaches if I stay too long in the sun or in a room that is too bright. Fortunately, the heart rhythm disorder has calmed down. My vision is ok, at least as long as I’m not overdoing things. There are ME symptoms much worse than the ones I have today, I know that. I don’t want them back.

Would things have been different if I hadn’t chosen to deny my symptoms and ignore all the warnings? It’s hard to be sure, but I think so. Perhaps life could have had a bit more content if I had stopped before.

Perhaps I could have been a bit more alive than dead.

15% more health would have been a great deal for me now.

I use cognitive techniques actively to get as much quality as possible from the limited life I have. I don’t use LP. I choose not to be bitter or angry.

I have nothing against alternative treatment or cognitive therapy as long as it is reasonable.

I’m ok despite my limitations. They’re just there on par with someone who loses a foot or a hand. You cope with it and figure it out. But no one expects that body part to grow out again. Life works best if you make sure to clarify the expectations from others. The external pressure of recovery has always been a burden.

I guard my energy levels like a top athlete, and stay within my limits.

I recharge before major events, such as a birthday in the family or a visit.

I am slowly improving, I choose to believe that I can get better by continuing to build myself up to a pace that my body can withstand. The progress is in tiny steps.

But I would like to offer some advice to those who have recently become ill with ME, who still have some capacity.

PROTECT YOUR CAPACITY!

Use pacing. Seek advice from peers with experience of the disease.

Keep up with the biomedical research. There is hope there and mostly good, documented scientific knowledge. Not all research is good research, stay critical. This is about your life.

Feel free to seek help from a psychologist, but make sure the psychologist has the right approach to the disease. You don’t need someone who’ll just go on about recovery in your head. You need to learn to live as well as possible with illness.

If you happen to recover, it’ll most likely happen without pressure. Unexpected recovery occurs in most diseases, even incurable cancer. Don’t give up hope.

Expect your GP to keep updated on ME. If you meet attitudes from the 90’s, change doctor.

And last but not least:
LP is not a good therapy for ME sufferers, it can even be harmful. Avoid it!!

If you have had a thorough medical assessment according to the strictest criteria and have PEM (which you most likely do as that is the cardinal symptom of ME), then learning the process won’t be dangerous in itself, BUT when using the process when you for instance are feeling exhausted or have palpitations, then you’re most likely on thin ice. By ignoring the symptoms you will deteriorate. It’s only a matter of time. Don’t expose yourself to it.

If you’re thinking “oh well, you can always use LP on other stuff than symptoms”.

Let me give you a few examples.

People with ME often have problems standing in one place. We sit, we lie down, we walk, but we seldom stand in one place. At home we may not even think about it, as there’s always a chair nearby.

But let’s say you go to the store. All goes well until you get to the checkout line where there is a queue. You have to wait. The discomfort rises, the pulse increases, you feel dizzy and your head is spinning.

Perhaps you’ll talk to your doctor and the doctor will in many cases conclude with ANXIETY.

You become insecure about your own psyche, so the discomfort just increases now. This would be a natural place to be encouraged to use the process. Don’t.

Check POTS first, which is part of the symptoms of ME sufferers. Doctors usually don’t know anything about it. Try rocking from side to side so that the muscles help the heart with pumping blood up to the head. You may be surprised at its effect.

Another example: Bad mood. Do you feel your mood drop? You become grumpy, snapping at others.

This would be a natural place to do the process so you’ll be feeling good and can continue with the day’s activities. Don’t.

Bad mood comes easily when you’re exhausted. You’re in the red.

My husband usually notices this before me and gives me a hint that maybe I should take a break. Half an hour/an hour in bed usually does wonders.

My point is that you with ME simply can’t distinguish between symptoms from other situations where it would have been natural to use the process.

The symptom picture in ME patients is massive. The signs of you starting to deteriorate are changing, and some symptoms are more obvious than others. And as long as PEM is central, LP will represent a great risk of deterioration. That’s my experience.

I have followed the debate after NEM (The National Committee for Medical and Health Research Ethics) has now rejected the application for a study on 100 ME patients with the LP method. I’m very glad the project was stopped. It could have caused a lot of damage.

If there’s one thing that really bothers me when it comes to LP, it’s the form I submitted after the course where I declared myself recovered during a euphoria of manipulation.

When I read that 60 anonymised stories of success were submitted to NEM along with the application, I shudder. My feedback may be among those.

When the newspaper Dagbladet in an interview with the deputy head of NEM, Berge Solberg, asks why they believe LP teaches to ignore symptoms he answered: “In one of the positive stories submitted about the LP course, a participant says they learned to shift focus from negative symptoms to “creating good feelings”.

I can’t stop wondering if that one is mine?? It definitely looks as something I could have written.

We never got a copy of the forms, so I can’t remember exactly what I wrote. But it’s probably just wishful thinking.

How great would it have been if my manipulated success story against all odds had turned into something good and ended the study? Because just the thought of that my “success story” can be used to lure other ME patients to an LP course actually feels like abuse. It’s straight out painful to think about.

The text was first published here.