“Adam”

In the summer of 2005, while working as an intern for a Chinese biopharmaceutical company in Shanghai via Innovation Norway and NHH, and attending evening lectures at Fu Dan University, I went on a weekend trip to Inner Mongolia, and out on the Mongolian steppes I contracted food poisoning.

With the courage of youth, I didn’t consider seeking treatment as these things went away by themselves, so after returning to Norway I continued with the last semester of a master’s study at the university, despite feeling feeble. In the middle of the exam period, everyone in my flatshare came down with something flu-like. The others recovered after a few days, while I remained ill.

From one day to the next I could hardly sleep, my mouth was dry, my chest was sore, I was dizzy and woke up more exhausted than when I went to bed. It was like at the same time having a hangover and the flu and having gone without sleep, only that it didn’t stop or get better with rest. My skin felt tender when touched, eyes and ears were suddenly incredibly sensitive to sound and light. It was hard to keep track of a thought, to remember names and to use the right words, as if a numbing layer had settled over my otherwise clear brain, while the muscles in my shoulder shook from exertion just by holding the phone up to my ear. I was moved to my mother’s house and was mostly bedridden there for the first year.

I relatively quickly got to the Neurological Outpatient Clinic, where I was diagnosed, but otherwise they had little to offer in terms of relief and treatment. I had gone from being full of energy and surplus, active in MMA, Kung-Fu, rock climbing, football and international student associations, school, work and social life, to struggling getting to the toilet and to ingest liquid food. The limited computer time I had before the room started to spin was spent searching, reading and trying to form a picture of what could be done to recover and get better.

Papaya pills were bought, acupuncture tried, homeopathy, EFT (Emotional Freedom Techniques) – tapping with fingers on the face in certain patterns, craniosacral therapy, magnetic soles, vitamins and supplements, ionised water, osteopathic manipulation of the wedge bone. I wrote to doctors abroad, tests were ordered and sent, and in return I received sheets with test results with various abnormalities, without it bringing me any closer to getting better. And with each of these attempts that all promised to cure me, and all had their price for both my health and my family’s economy, my courage sank a little.

Then I read about someone named Phil Parker from England, who had created something called the Lightning Process, a course over three half-days that made people with ME spontaneously recover. And despite the fact that it cost a bit more than 12 000 NOK + travel and accommodation just outside of London, it was so much in demand that you had to apply to get access to it and participate.

A year and a half had passed since the flu in the flat-share, and I had found a new normal. After first having been bed bound for a year, an incredible long time for a now 26 year old man who had no time to lose, and after the first shock of being able to feel so miserable without seeming to be in immediate danger of death, I came to a point where I had to try to sit up at bit. I couldn’t just lie there, even though it felt like being constantly carsick in a world that spun and with a body filled with lead.

I felt hopeful when reading the stories on Parker’s website. It sounded completely crazy, but it was crazy as well to all of a sudden become so sick. So if all these people who wrote their testimonies had recovered, then perhaps this could happen to me too.

I filled out the contact form, enthusiastically received a positive response, booked airline tickets and accommodation, rested for a month before departure, rigged myself with molded earplugs under earphones with white noise, and large, dark sunglasses and off I went.

We were three participants on the course, two girls from England and Germany, and me. The course was held in a meeting room in Phil Parker’s offices at street level in Crouch End. He stopped by before the course started, smiled warmly and wished us good luck with our new lives and asked us to spread the good news after our departure. It was a bit like a religious revival, but I had used my savings and money from the family in order to get here, and if I crashed I didn’t know how to get back home. So I was invested, with body, future, finances and mind, and there was nothing I wanted more than for this to work.

We were told that what we were about to learn was a secret patented method so powerful that it could never be passed on without training from an instructor, and we signed documents not to tell what we were about to experience on the course, especially not to family who wouldn’t understand. We were told that this was important for it to have an effect, and then we got started.

The method itself was that every time we noticed symptoms of illness or there was a thought about the consequences of doing too much, or just of feeling exhausted, we were to say Stop! Stretch out our arms, and by taking a step to the side choose whether we wanted to get in the pit, or on the path to the life we loved. This is how we were to train new nerve paths that bypassed our established thought patterns that were perpetuating the disease.
All the time we thought about the stories we had read on Phil Parker’s website, about people who had risen up from their wheelchairs after the first day and left the room, and we shouted stop, marked quickly with our arms and chose the life we loved.

The second day was lightning therapy, where we were to talk about our feelings and what the disease had taken from us, what we missed and what this made us feel. We talked and shared and got emotional and shouted stop and chose the lives we loved.

Our course leader, S. P. told us that he had been doing ME for 8 years and was close to giving up when he had found the Lightning Process and become cured. ME was something we did and could choose not to do. We really wanted that, so when we were given the task that evening to do something we hadn’t done for a while, something we had learned to fear, we threw ourselves into it.

For me it was to walk longer distances, which now would mean more than a few hundred meters, which inexplicably completely drained me for energy and could cost days or weeks as bed bound and with increased symptoms, a feeling of fever and inflammation in the body and a numb brain.

As a trained officer and instructor in the Norwegian Armed Forces, I was well acquainted with pushing myself, how much a human body and mind can actually withstand, and I had a high tolerance for pain. So every time thoughts of doubt appeared, or I noticed symptoms of fatigue and dizziness, that my vision doubled or that my legs stiffened with lactic acid, I stopped in the middle of the street and made my movements and said Stop! and chose the life I loved.

I’m not sure how far I got. The next thing I remember was that I threw up in the bathroom of a street kiosk selling fried chicken under flashing blue fluorescent lights, got some water in my face and was pushed out of the room by an elderly lady who saw that I was shaking and trembling and probably thought I was a drug enthusiast. I got into a taxi and remember little until the next day.

On the third day, Phil Parker came in and congratulated us on our new lives and having made such wonderful changes. He shook our hands and invited us to join in his excitement. We were all three of us visibly exhausted, one of the girls was obviously in pain, but such things now belonged to the past, and we smiled and nodded and longed for the wonderful feeling of being healthy that we hoped soon would be turning up.

At the end of the last day, we were told that it was quite common for it to take some time before the LP worked, perhaps weeks or months, and we just had to stay positive, do the method and not give up because of the setbacks that would come. And it would be important to have follow-up conversations with S. P. which he would make himself available for.

That was something a bit different from the spontaneous recovery we had read about before departure, but we were not to give up.

Finally, we were given a piece of paper where we had to tick and sign that we had recovered during the course. After having learned over three days that we were to tell ourselves and others that we were healthy, we perceived it as an intervention and part of the course. A contract with ourselves in line with “fake it until you make it” as S. P. said, and if you didn’t sign, you were not willing to try the premise for the course you’d just paid 20 000 NOK for. This was confirmed by the instructor who knew were were not at the finish line yet, so of course we all signed it.

In the weeks and months after the course I continued to use the method actively. I was still suffering after the journey, but followed the steps conscientiously and stopped and chose with all my heart. Despite my efforts, it gradually became clear that it had no effect or impact, other than me going beyond my tolerance limit for activity, and every time I crashed it was harder and longer, and every time I got back on my feet I was more reduced than before.

S. P. contacted me on a regular basis encouraging me to book follow-up calls on Skype for 500 NOK for half an hour, or to meet up during one of his travels to Norway to hold courses, as Norwegians proved to have a particular interest in the Lightning Process.

He never wondered how I was or how I felt, it probably had to do with the focus on positivity, but when I said on Skype that things didn’t go so well, that I didn’t notice any improvement, and about the crash that had kept me in bed, he told me that the other two participants from the course were healthy and living their best lives, so I just had to keep going.

I wanted as much as them, didn’t I? So I didn’t give in. I lost more than 10 kg in weight during that period, I was constantly nauseous, full of adrenaline, red and hot in the face and had difficulty with getting enough nutrition. I weighed just under 60 kg, which was met with increasing concern from my loved ones for a man over 1.80 who for reasons incomprehensible to them still insisted that I was improving. I was going to recover. I didn’t want to be the only one this didn’t work for. And I pushed myself until I could no longer stand upright, and until I completely collapsed. I was bedridden for many months, without even being able to look at anything or listen to an audiobook, alone in the deafening silence of a dark room with only my failure as company, hour after hour, week after week.

Some time later I contacted the two girls via Facebook and asked how they were doing and how they’ve managed it, and was told that they were both as ill as before the LP and that they had given it up a few weeks after the course was over. That was surprising.

I had as mentioned prior to the LP tried a number of alternative approaches, and most of them were open that this was just an attempt, they were gentle and if it had no effect, they were honest about this probably not being the solution for me, and wished me good luck on my way.

What separated the Lightning Process from the other alternative treatments, apart from the extremely high price, was that they thought they were to cure everyone, that if I didn’t recover, it was because I wasn’t ready or didn’t want it enough. And when I reported of deterioration and that I could no longer leave the bed, there was complete silence from the instructor, who quietly withdrew and didn’t make contact again.

Some years later, there was once again a lot of writing about LP in Norway, with a number of recovery stories in the newspapers. What had previously been reserved for women’s magazines was now presented as something of news value in larger newspapers.

But it was only when stories began to emerge about spontaneous recovery with a new Active Method (Aktiv Metode) and the owner, the former journalist Live Landmark, reported that 96% recovered or improved, that I understood that the signatures of the course participants were used as statistics.

This was obviously misleading and deceptive. Everyone who had participated and was involved knew that. We had not recovered at all. On the contrary. But we were all three listed as recovered, and used in marketing.

It turned out that dishonesty and cynicism were traits that unfortunately permeated the LP business. From the founder Phil Parker who has been reprimanded and found guilty a number of times by British health- and consumer authorities for making untrue and undocumented claims about the method’s effect for a number of diagnoses, to the manipulated research he himself has carried out on his journey from healer and hypnotist, to PhD in psychology, duly dissected by renowned researchers. And by now classifying LP as a method and not a treatment, they exempted themselves from any requirement of medical ethics or responsibility for follow-up after the intervention.

It’s both painful and quite absurd to see that now, over 16 years later, the same miracle stories still appear in Norwegian magazines and newspapers. And even though most people turn out to be self-diagnosed with the disease they think they have been cured of, or have written a book to launch about their journey, or even offer courses in LP, the sale is done, and a new generation of desperately seeking patients is tricked into an expensive trap.

In light of the rapidly growing body of research that points to the fact that the most important thing for the best possible disease course when ME is suspected, is to early adapt activities and to not push oneself to crashes, ie the complete opposite of what the LP instructors encourage, it is very disturbing that the method has gained such a deep foothold in Norwegian administration and primary health care.

It’s similarly depressing that Landmark has followed Parker’s recipe, and from unrelated qualifications gained access to a PhD in Psychology, to give legitimacy to the method and achieve even greater access to public health and, like Parker, now is to do research into the Lightning Process with herself both as a candidate and instructor.

It seems as unscientific to use a questionnaire to research a method of suggestion that’s based on lying about one’s state of health and to tell oneself and others that one is healthier than one actually is, in the hope that it will manifest itself, as unthinkable that the outcome will be anything other than what’s desired by Landmark.

Without objective end points, wIthout any kind of measurements of lactic acid, blood pressure, activity, number of steps taken, time spent lying down, and without long-term follow-up to see how the participants are doing, after the adrenaline has drained and the effect of placebo has diminished.

I know what I’d be answering myself after a week and a month in the middle of the process of telling myself and others that I was recovered, in desperate hope of achieving such improvement.

What Live Landmark and her followers don’t seem to want to understand is that good science is when you try in every possible way to disprove your own hypothesis, and see what’s left. Not to find a pretext to having it confirmed.

The study design appears as commissioned work, which afterwards undoubtedly will be picked apart by competent researchers. But not before she’s used her journalistic network to publish articles about the study’s excellence and sensational findings, which will lure a new generation of seeking sufferers into the net of the Lightning Process. At best just to make their wallets lighter, and at worst to do irreparable damage to their lives.

I still see S. P. figuring prominently on the website of Recovery Norge, the patient organisation for people who have recovered from various disorders with LP and magical thinking, with a story about how he got a Norwegian woman to rise from her wheelchair on the second day of a course with him. It makes me sick to think that I’m part of the success statistics he uses in his marketing.

With everything we know today about the crucial first couple of years after the onset of the disease and their significance for whether one recovers from a postviral or post-infectious disease course, or if the disease becomes chronic, it feels like a blow to the stomach to see the Norwegian doctor Henrik Vogt advocating for an organisation promoting these LP testimonials, and as a former journalist use his network to on a regular basis get advertising stories published, in addition to actively censoring so that no negative voices are allowed.

A doctor who’s also employed at the Center for Medical Ethics at the University of Oslo, who’s selling an unvarnished and dangerous picture of the risk this method entails, in obvious conflict with the medical cardinal principle of doing no harm. And it’s difficult to understand how he in repeated media appearances he so condescendingly calls everyone ME activists who have different experiences than his recovery stories.

My stomach hurts from thinking of the desperately sick who in an early phase of the disease are willing to try anything in order to get their lives back, and who are reassured to see a Norwegian medical doctor approve of this.

The one, single action I have ever taken that has had the largest negative impact for my life, besides the food poisoning and the flu that is believed to have triggered the disease, is to have completed the Lightning Process, and trusted in an unskilled LP instructor to the point that I pushed myself far beyond what my body tolerated.

It took 10 years before I was somewhat back to the same level as before I went to England. 10 of those years that should have been the best years of my life.

I wish someone had warned me about the dangers of the Lightning Process before I boarded that plane to Phil Parker and Crouch End.

(Adam is a pseudonym. The identity of the owner of the story is known)