Journal of IiME Volume 3 Issue 1 www.investinme.org SEVERE ME – A NORWEGIAN EXPERIENCE everything moved foward quickly, and on the 10th of May 2008 she was in the sitting room for the first time in two years. A couple of weeks later she could venture out into the garden for the first time in seven years. At this point she was able to be without sunglasses indoors, but outside sunglasses were still needed. The improvement this time is completely different from the one in 2003-2006. It is so in every aspect. The change in May was enourmous, almost miraculous. We saw the illness losing its hold, whilst with the previous period of improvement it was a constant battle against something overpowering. Since June last year Katrine has been a patient of Professor Kenny De Meirleir. One tries to remove causes successively and build up the immune system. The treatment, change of seasons, infections, continuing illness and other things, cause the condition to fluctuate. She has since May 10th last year, been up every day and this is something of an experience for us around her. She is engaging, reflectful, caring with lots to give and convey, hungry for information and knowledge, is realistic in relation to the illness and at the same time plans for the future. She still has to be careful and take it easy. Experience tells us, also this time, that going too fast brings relapses or, at the very least, slower recovery. Her younger brother, Frode, who is 23 years old and has been ill since he was 7, also experienced great improvement last year after several months on a similar treatment protocol as Katrine. He had an experience of living with an ’abundance of energy’ for the first time which was a fantastic experience for him. To be free from looking for a chair to sit down on, to avoid detailed planning and giving up a lot the following days if he was out with friends the evening before, to be able to live more like everybody else on good days, became a Invest in ME (Charity Nr. 1114035) great experience. The previous summer was a summer when he could do more and he and his best friend, who has been fantastically supportive all these years, went to south of France for a holiday . Being such car enthusiasts, they could both experience many things they had dreamt of in the past years. Frode has gradually built up his IT company. He still has to live a restricted life, but he has a far greater capacity than before. Bjørnar, the eldest in the family, now 32 years old, was the one who was the main character in the 2006 film when he was interviewed in the dark. The TV programme gave the severely ill a face and set in motion a lot of emotions and engagement. The fact that he was a TV journalist with an exciting career and ended up as a patient needing care, made an impact on many of his colleagues. The effort of being on TV such as having a hair cut and shave, took a lot of energy out of him and led to further deterioration of which he still has not recovered. At present Bjørnar can communicate with signs and speak a little if needed or when he has more energy. If he speaks more than his energy levels allow, it leads to increasing symptoms which in turn can be the start of long term worsening of his condition. This balancing of trying to avoid worsening of the condition, is important in moving the condition in the right direction. Last year in the spring he was put on a similar treatment as his siblings but there was no big breakthrough. Four months ago it looked like his condition was finally on its way to improving. At that time his test samples that were sent to a specialist laboratory were found to be positive for an African amoeba. After a few days on a strong amoeba treatment protocol, he experienced a radical change in his abdominal pain, hunger and bowel movement function. He is still under treatment for many other things that were found. He feels he is getting gradually better. Page 33/76
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