«A conversation with Arild Berg helped me escape ME »

My name is Adrian, I am an 18-year-old who contracted ME when I was 17. I am an active boy from Oslo who goes to football training more than 4 times per week.

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Boy (17)

Over the Christmas holidays in 2018, I kept up a training schedule that required a demanding regimen to be able to go through with the programme. Afterwards I caught a cold that never seemed to go away. Over the next four months I went through the classic ME sensations of having a feeble body and generally feeling ill all over. The symptoms varied a little from day to day, but the following were there, constantly, for the whole period: a sore throat and total exhaustion after sleeping, feeling cold and burnt-out.

I felt fine while still jogging, but ended up in bed the subsequent days

During my illness, I often tried to take a few 10-minute, gentle runs to see how my body would respond. The light jogging was never a problem for my body whilst I was out running. It was as if I forgot that I was sick. All I felt at the time was how good it was to be out of the house. The way I felt after these light running sessions varied a bit. Occasionally my body would feel fine, and I would think I was on the mend, but mostly I had to stay home the following day because I felt tired after the run. Another time, I tried to go at a faster pace. As before I felt fine while still jogging, but ended up in bed the subsequent days.

My GP and other doctors tested me for all possible long-term disorders, such as mononucleosis and the like. I went through every medical check-up, and I really mean EVERY ONE. Nothing came back positive. The doctors advised me to take things easy and start up with some gentle activities when I felt the time was right. I saw two different doctors. One of them said nothing about what he thought it might be. The other one said it might be ME.

During the first couple of months, I was bedridden with no school or any type of physical activities

During the first couple of months, I was bedridden with no school or any type of physical activities. I was patient at first. I was convinced that my body only needed to rest after a very demanding Christmas period with loads of training, weight-training and all the stress this entailed. But after two months, I was quite sure that my body had been given all the rest it could possibly need. By now I was getting impatient as I could simply not comprehend why I did not get well again. I therefore decided to go to the most important classes at school, despite not feeling any better. My short days at school required only a little concentration, but nevertheless I was completely drained by the time I came back home again.

By now I was getting impatient as I could simply not comprehend why I did not get well again

I carried on like this over the following months until I contacted Arild Berg. He is a former football player who had suffered from ME for a whole decade. He was a friend of the family, and told me he would be happy to help. It was not long before he was on a plane from Bodø to Oslo.

The day Arild came to see me he claimed I could get well again within a week. I felt pretty convinced that I was psychologically sound and stable, as I had no more worries than most young people of my age. For me to get well again he first needed to have a conversation with me so that he could get to know my personality. As we chatted, we got to know each other pretty well and I felt we had quite a few things in common. Mainly in our way of thinking. This made me trust him. His thoughts did not seem new, they felt familiar and clearer.

Arild has helped many patients with ME in his life

Arild has helped many patients with ME in his life. He had a theory that stress is what draws the energy out of people. When you are stressed, you are in something called the ‘Fight or Flight’ mode. There is nothing wrong with that as such, we actually need it to cope with demanding situations. Pupils are diluted to help us see better, the body heat is drawn from hands and feet towards the inner organs in order to protect them, and adrenaline is pumped out to give you the energy required to overcome the dangerous situation you are in. Arild believed that when you stay in this mode for too long, the body eventually collapses because it is unable to keep up the focus for so long. Some symptoms that ME patients experience is hypersensitivity to bright light and they often feel cold. The reason for this is simple: the body is still in the fight or flight mode. The senses are heightened and heat is drawn in to the inner organs. The question Arild asked himself was how to get the stress levels down in the ME patients.

I could not understand how something could be stressful to me when I had nothing I had to do

When Arild explained this to me, I was pretty surprised that things could be so simple. All the same, I was still not convinced that stress could be the reason I had ME symptoms. At the beginning of my sickness period, I had actually suspected that this might be the case. Which is precisely why I took 2 months off school and training. I could not understand how something could be stressful to me when I had nothing I had to do. Naturally I was curious to see how Arild could help me get well again. All I did was open up to him as best I could, because I knew if he was going to help me, he would need to know everything about me. I also took the opportunity to ask him a lot of questions. Arild often responded by telling me stories.

One story I could relate to was about a fishing trip he had planned with his brother Runar. Runar had asked Arild a couple of days in advance whether he would like to come along on a fishing trip. This was when Arild was still suffering from ME. He said he would and over the next days he made sure to get a lot of rest so that he could save his energy. In the end, however, he ended up not going along on the fishing trip. From this I learnt not to save up energy for something you want to do in the future, precisely because it is exactly this kind of thinking that means you might end up incapable after all. I feel this is important because if you have the mindset of ‘saving energy’ you miss out on other things when waiting for this one particular event to come about. I also think it is unhealthy to walk around thinking about things that are going to happen. This created a lot of stress in me, and was one of the reasons I did not have the energy to actually do the thing I was saving up for.

From this I learnt not to save up energy for something you want to do in the future, precisely because it is exactly this kind of thinking that means you might end up incapable after all

Arild gave each person his full attention and came to recognise certain personality traits that seemed to be a common denominator of all the people who ended up with ME. Some of these traits are a tendency to worry and to be very meticulous and precise. It means that these people tend to think a lot about upcoming events such as practice sessions and training. He noticed other characteristics too, but for me these were the main triggers for stress. I felt that every time I had nothing going on, all my thoughts started spinning around training, school and other things. I knew very well that I thought about these matters a lot, but not that they made me feel stressed. Arild helped me realise this.

For me to stop overthinking my problems, Arild said I had to find activities to distract my mind from worrying. This could be computer games, TV series, films or other activities that I enjoyed. The main thing was to have my attention focussed on the here and now and not on all the other thoughts swirling around. It sounds a bit crazy to have to always be doing something in order to distract one’s own mind, but that was the only way I was able to shift my focus away from all kinds of problems that might pop up in days, weeks, and maybe even months ahead. This way, we could wipe out all the stress these worries produced.

I strongly disliked the idea of not having control… Arild said it was simply impossible to be in control of everything that might or might not happen

However, there still remained my tendency to be so meticulous, which would make me overthink things and stress me out. I was meticulous in my preparations. I was always very well prepared for any eventuality, so that I could control things. I strongly disliked the idea of not having control. Say a presentation at school. The time allocated is short, and if your mind goes blank, you totally lose control of the situation. Other examples of how I make sure I am always prepared are e.g.: when do I have to go to bed to get enough sleep, what to eat in order to stay healthy and how to perform during football training. Arild told me that I became over-controlling and it made me stress out. He said it was simply impossible to be in control of everything that might or might not happen. I had to learn to be comfortable with not having total control. This obsessiveness had to be reduced. First off, he told me to remove it completely. This I could do with no problem at all, as being sloppy is of course the easiest thing on earth. He told me to do the opposite of what I was thinking. For example, stay up extra late when I really ought to go to bed early. This way I succeeded in quitting being so overly meticulous and eliminated all the stress it led to. Being accurate and precise can be important, of course, but during my recovery from ME I threw all that out the window. You could also say that being overly conscientious is the same as worrying, but I believe they are two different things. Being overly meticulous was mainly something I did, whereas worrying was mostly in my mind. What they have in common is that they take away my presence. I find myself in a sort of condition where I only think about what is going to happen and not what is going on right now.

After the conversation with Arild, he told me to get back into training and school as soon as possible, because missing out on training and school was also a stress factor

After the conversation with Arild, he told me to get back into training and school as soon as possible, because missing out on training and school was also a stress factor. In addition to this your body is in a state where it is feeble regardless of what you do. Consequently, there is no point in resting when you feel tired, because you will not get any restitution anyway. When recovering from ME, Arild said that when the body feels bad you should disregard it – maybe take the intensity down a notch but only if things became really bad. Otherwise just follow Arild’s advice on how to stop worrying so much and de-stress. To me, this meant taking your mind off school, football and other concerns, but other people may have different issues. This is dependent on the individual. Which is why it helps to talk to people like Arild to figure out what are your own stress factors. 

I was never formally diagnosed with ME by a doctor, because I got help before I became seriously ill. Arild called my condition “almost-ME” because I was not as fatigued and not as sick as many other ME patients. I believe the difference between my condition (almost-ME) and of ME patients whose conditions are worse than mine is simply that when healing from ME the quantity/load of training will be less at first. Arild himself started out by taking walks, not running. All the same, my condition was serious enough to make me miss school.

Arild and I only had that one conversation and some follow-up via text messages. I considered myself well again the moment Arild made it clear to me what I needed to be doing. The next day I played football and went to school. Now, a few months later, I can still occasionally feel the feebleness from the ME condition, but whenever I worry about this I think back to my conversation with Arild about what to do to get better again.

Arild. Thank you for helping me out of  ME. I owe you my energy. You were the wisest person I have ever known. Your advice and rules will never be forgotten.


Read Arild Berg’s own story here.

Children and adolescentsMaleME/CFS-like conditions, incl. undiagnosed ME/CFS and burnoutGraded exercise therapyStress managementOther methods

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