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You will find the lecture translated below
My name is Marte. I am a doctor. And I have had CFS or ME.
It is particularly meaningful for me to share my story of being ill in Copenhagen of all places, because it is in Copenhagen that my story begins.
Nearly 11 years ago I came here with a big suitcase and high expectations. I was on my way to my dream job – working for the UN in Uganda. On the way I had to stop here in Copenhagen for a briefing. After the briefing I didn’t feel well and discovered that I had a temperature. This was most unwelcome, so I took a paracetamol, forced my over-filled suitcase shut and continued on to Uganda. But I did not get better.
When I arrived in Uganda, my temperature rose even further and refused to go down. Finally I was admitted to a hospital in Kampala. Although I was fairly sure I hadn’t contracted malaria, it was malaria I was treated for.
Much at stake
They gave me quinine, which reduced my temperature a little, but I felt just as miserable. The hospital discharged me, and I went to stay in a hotel room in Uganda. While there I finally diagnosed myself as having glandular fever – or the kissing disease, as we call it in Norway. Blood tests confirmed this diagnosis.
I was sent home to get better. My flat had been rented out, so at the age of more than 30 I had to move back in with my parents. My project was to recover and return to Uganda. It felt like a lot was at stake.
My medical training told me that activity was important to get me started again. I therefore went for slow walks, and occasionally I tried to go to a medicine-related meeting at the university. Every time I was ‘punished’ with more severe symptoms. My muscles became stiff and heavy, I was overly sensitive to sounds and felt what many ME patients describe as the ‘brain fog’. It was difficult to concentrate, and all sensory impressions were painful. After a while I just stayed home on my parents’ sofa. I watched TV with the sound turned low and worried about my parents returning home from work, since I then felt I should at least put some dishes in the dishwasher. Some days that seemed an unsurmountable task. Any strain or stress made things worse. My social life was virtually nil.
I’ve been searching for pictures of me from that period. This is the only one I found. I’m out on one of my slow walks, before going home and getting punished for it.
It felt like something very physical
It felt like something very physical. The symptoms came after activity. The more of an effort I had made, the more symptoms I got. I tried to keep my spirits up, and I didn’t feel I had a negative mindset or was lazy. On the contrary, I tried to do everything in my power to get better.
After some time I saw a neurologist with experience of CFS/ME. I was afraid of this diagnosis, because to me it implied very little hope of improvement. But that was precisely the diagnosis I was given. The neurologist told me to wait and see.
I was afraid of this diagnosis, because to me it implied very little hope of improvement.
I did not seek out any patient associations or web forums, but over time I met some other people with ME on the internet. They talked of being ill for many years, and I feared this might happen to me, too. I was scared of becoming as ill as the weakest patients, who were lying in darkened rooms, and I focused a lot on doing what I could to avoid such a fate. One of the things I learnt from others was so-called ‘activity adaptation’ – to parcel out my energy so that I never did too much, in order to avoid getting more symptoms. I always had in mind to do just a little less than what I thought I could stand. I never walked anywhere uphill, but caught a bus even if the distance was very short. I had some extra rest when there were more symptoms, as I was scared of ‘the ME backlash’ which I had read about. If I felt tired, I reduced my activity level. That way I always watched out for what my body was telling me and adjusted my life accordingly.
That way I always watched out for what my body was telling me and adjusted my life accordingly.
I was afraid of telling others of my diagnosis. I was afraid of the stigma, afraid people might think I was lazy, that my symptoms weren’t real. I knew that many of my colleagues and other people were sceptical to the ME diagnosis. I was afraid they wouldn’t understand me.
Having studied the usual academic medicine, I was sceptical to what they called the Lightning Process, since it had not been scientifically proven and was not supported by Norwegian medical authorities. The stories told in the media also seemed too good to be true. It seemed impossible that just a few days of therapy could change such strong and dominant physical symptoms. From other sick people I gathered that the people running Lightning Process did so for purely economic motives, and that those who recovered had never really had CFS/ME but other issues. All this made it unthinkable for me to try it out, even though my sister knew someone who had recovered after such treatment. Today I know that those things were untrue.
The Rituximab study
A while later I came into contact with two cancer specialists at Haukeland University Hospital in Bergen. They were hoping to try out a cancer medicine on ME patients in a double-blind randomised study and they needed participants. I was examined and assessed, and my condition was found to satisfy the strict requirements for joining the study – which is now known as the Rituximab study. It has received a lot of publicity. I was given two infusions, and neither I nor the doctors knew whether they contained Rituximab or a placebo. I waited and waited for the big improvement that I was hoping for, but it never came.
I moved back into my own flat. For two hours a week I visited my old job at the university, taking a taxi there and back. The rest of the time was mostly spent on the sofa. After a while I knew the day-time TV schedule off by heart.
Once a week I worked out at a gym, doing exercises which my physiotherapist had planned for me. I was lifting 1 kg weights next to big, muscular men who lifted a great deal heavier weights. But in spite of the low intensity, I had a temperature afterwards. My muscles ached, I felt completely worn out. I, who had been given an A in a university maths exam, now had problems with simple mental arithmetic. My memory was poor and just about anything could knock me over.
A wise GP
Fortunately I had a wise GP who knew a psychiatrist who treated patients with CFS/ME. I was sceptical, but as time went by I had become more willing to try anything. The fact that this therapy was part of the Norwegian medical services made it more acceptable to me. After an assessment there, I was given medicines to help me sleep better – and a hope that things might improve. I therefore chose to leave the Rituximab study before the follow-up period was over, in order to participate in a four-day therapy programme at the far end of a Norwegian fjord.
As I went there I didn’t expect to regain my health, but hoped to learn some techniques to manage my daily life better. I was reconciled to the idea that life might stay like it was now into the unforeseeable future.
Left her scepticism at home
However, as a doctor I knew that motivation is crucial in any therapy. So on my way to the treatment centre, nearly two years after fever had ravaged my body in Copenhagen, I made my up my mind to give this therapy a chance, at least for these four days, putting aside all doubt and negative thoughts. Now I just wanted to get better, and would go for it with everything in me. But it wasn’t that easy to put aside my fears. That first evening I told my fellow patients that I was afraid there would be too much activity. My experience told me, after all, that too much activity made me worse, and I was afraid of getting worse.
The four-day programme was a lot fuller than any I had had during my two years of illness. It consisted of lectures on the connections between stress, activation, the autonomic nervous system and the immune system, therapy in groups and individually, mindfulness exercises and light physical activity. On top of that there were communal meals and social time with the other participants. All this would have been unthinkable until now.
To my great amazement, however, I did not get worse; I got better!
An almost magic feeling
It felt like magic to have my body function again, to have it cooperate with me. Being able to walk around in the forest, taking in the smells, the sounds and the looks of forest and nature without any concerns for my body and illness. I, who used to avoid walking uphill, now climbed the steep hills near the therapy centre with pleasure. There and then it just felt like magic; it was impossible to understand how something which had dominated my life for so long, had simply vanished. And since I had made up my mind not to be critical and ask lots of questions, I decided that for now I would just accept the new situation. And enjoy it.
Strategies for remaining well
Part of the therapy was to plan some key strategies for the time afterwards. One of my strategies was to make no attempt to understand my improvement, but just to accept it. And it is only now, many years later, that I have started reflecting on what it was that made me better. Another strategy was to not to enter into any discussions about the therapy, not to read or talk about disease, but just to be, here and now, and enjoy the improvement. I avoided all contact with other people who were ill, and told everyone who wanted to discuss my treatment that this would not be possible.
I had also learnt good techniques for how to counter tiredness and fatigue when it happened.
I had defined some goals in order to continue my wonderful improvement. One goal was to carry on with mindfulness exercises. Given the improvement I had made already, I was very motivated to continue, and I did my exercises several times every day. Mindfullness helped counteract stress and activation, thereby preventing my body from generating symptoms.
On top of the mountain
Another goal was to walk uphill, since I used to avoid just that. I live in Bergen, a city surrounded by seven mountains, so there were plenty of opportunities to walk uphill. A few days after returning home I began to walk up one of those mountains. My plan had been to walk a short distance while practicing the techniques I had learnt – being mindfully present and having an external focus. I focused on the flowers that grew along the path, the insects humming, the wind against my face, and the view, which became more panoramic the further up I got. Suddenly I found myself far up the mountain – without feeling tired and without any physical pain whatsoever. So I decided to walk a little further up. And a bit further. And suddenly I could see the mountain top! I couldn’t turn round now, could I? I reached the summit that day.
Standing on the mountain top that day was indescribable. Rarely have I felt so strong – and it was only about a week after I had felt quite debilitated.
Standing on the mountain top that day was indescribable. Rarely have I felt so strong – and it was only about a week after I had felt quite debilitated.
My sense of achievement when I returned home, still feeling no symptoms, was nothing short of fantastic.
The week after my therapy I went back to work in a 20% position and then increased my hours gradually. After about six months I was back in a full time position. Later on I went to other parts of the world. I completed my PhD. I had two children. I worked as a hospital doctor with long night shifts. And I stayed well.
So what was it that led to my recovery? How could anything that was so physical and bodily, be changed that fast by means of cognitive techniques? I call it my life’s great turnaround, and until it actually happened, I did not believe it was possible to change so much so fast. I myself was one of those who had thought that if you got well that quickly, you had never had chronic fatigue syndrome or ME in the first place.
What was it that drove my disease?
This is my story, and I am not saying it will be like this for everyone. My experience was that my body was activated after the infection and remained in a kind of stress condition, which probably activated my immune system, thus creating infection-like symptoms. All the time it felt like I had a kind of flu. At what point this activation transitioned from being a necessary reaction to an infection, to becoming a needless activation that was maintained by other factors, I cannot say. But it was probably reinforced by me constantly monitoring symptoms and adapting my life to what I felt in my body. The fact that I was afraid of symptoms, probably meant that the symptoms were given more attention and hence increased in strength. You might say that my nervous system was sensitised, and my body reacted by generating symptoms for strains that normally would have given no symptoms.
I was so scared of getting worse that I constantly checked how tired I was, and that made me feel more and more tired. I began to avoid anything that might make me worse. All activity was considered dangerous. Now I can laugh at myself for not walking uphill, but it was a serious matter for me at the time. And I would have felt under attack if anyone has asked whether that really was a good strategy. Of course it was a good strategy for me – given that my objective was to avoid ‘dangerous’ symptoms.
This is why it was important for me not to think too much about why it worked, just after the therapy. It was difficult to accept that some things I myself had done, had helped maintain my symptoms, and to realise that I might have recovered much earlier if I had been ready to accept this new knowledge.
Intensive therapy was crucial
For me it was crucial to receive the therapy in such an intensive format. I had to carry on with the new techniques for hours on end, day upon day. That way it was easier to learn the new techniques well. I had enough time to notice an improvement, and I had less opportunity to relapse into old patterns. The period after the therapy was also crucial, I think. Not to enter into discussions and arguments, entertain doubts or ask questions – but instead to hang on to what you have felt is working, and have a plan for how to carry on with it after the therapy.
For a long time it seemed like magic to me that mental techniques actually helped against this disease, which a patient feels is very physical. I didn’t believe myself that such a therapy could make me recover. And like I said, it is difficult to accept that my own strategies may have contributed to my illness. For this reason I understand sick people who get angry when doctors or others tell them that they can recover through cognitive therapy, Lightning Process or other mental techniques.
For this reason I understand sick people who get angry when doctors or others tell them that they can recover through cognitive therapy, Lightning Process or other mental techniques.
I hope, however, that as I and many others in Recovery Norway share the stories of our own recovery, more people will give such therapies a chance. I trust we can communicate some hope in a landscape where there is much hopelessness. And I hope that therapists and researchers will also look at us who have recovered and make use of our experience. I am therefore very happy to have been invited here today.
And just in case you were wondering – I was given a placebo in the Rituximab study.
This lecture was given on 21 May 2019 at a seminar entitled «Det spirer alle vegne» regarding functional disorders, supported by TrygFonden in Copenhagen. Following her recovery in 2010, Marte has given birth to two children, completed a PhD and worked full-time as a doctor. I 2011 she won the Forsker Grand Prix award for communication of research. Read here.