This letter was originally posted on fryvil.com. Reprinted with permission.
Letter to King Harald of Norway from Martin and 58 other young people with M.E.
ME mum’s confessions proudly presents an important letter to King Harald from Martin (17). The letter is also signed by 58 other children and youngsters with M.E. (Norwegian original)
A shortened version of the letter was published in the leading Norwegian newspaper aftenposten.no and was also in the printed paper. In the paper, this was an important contribution to the ongoing debate on M.E. We recommend reading the full version. Both the letter and the following quotes make a strong impression.
In addition to the letter, the King received all the senders’ names and how long they’ve been sick, a list of 47 quotes and 5 pages with photos of the young ones. We have chosen to remove personalia here. The original was sent to the royal castle December 7th 2014.
Martin has important things to say, and we hope that he, and the other children, will receive a reply from the King.
Dear King Harald,
I write to You because You are our King and have shown that you care about the weak in our society. I also know that you are concerned about children’s and young peoples’ situation in Norway. I write primarily on behalf of my brother and me, but also for many other children and young people suffering from the disease M.E. or myalgic encephalopathy. Having lived with this disease most of my life, I increasingly ask myself the question:
Is Norway really the best country in the world to live in for everyone?
Living with M.E. is a terrible situation by itself, but that’s not why I’m writing to you. I write because especially children with M.E. and their parents today are terribly distrusted and misjudged
M.E. is a very severe disease that affects the entire body, but unfortunately it’s cause has not yet been found. The only thing that helps is to have peace, caring people and symptom-relieving drugs. Yet, today it is regarded by CPS that the disease is caused by over-protection by the mother. Yes, hard to believe, mom, who always takes the right considerations and tends to us when we are at our worst, and that is not an easy task…
We in our family have so far been through two CPS cases and both have fortunately been closed without action. Our mom is a doctor and this might have been of help, but what a burden this has been to all of us. It is hard to fight against people who don’t understand and only have faith in child protection proceedings and care orders.
(This was as far as I got when I started to write a letter to You two years ago. Since then I gradually have become worse, and I have understood that there are many other children and young people with M.E. who are struggling with the same problems as I am. So now I want to continue on the letter and hope I manage to finish it this time.)
I would like to tell you a little about what I’ve learned about M.E.
M.E. is a very complex disease that affects many children and young people in increasing numbers. One assumes that approximately 2,000 children under the age of 18 are affected by this disease in Norway. There are often several who become ill in the same family, as my brother and me. Actually, our mom is also a M.E. sufferer.
This is a disease that «does not take your life, but robs it”, because the body somehow does not allow you to live your life anymore. There is almost nothing you can do without the body becoming overloaded and more ill. It can be compared to training resistance or a «blasted horse».
There are unfortunately many who don’t understand this disease. They think that because they can’t find anything wrong in the normal tests, we are not really ill. Some even say that M.E. is a disease from which you can think yourself better or even healthy.
Luckily, there are many researchers especially abroad who are investigating what happens in the body of M.E. patients and they find many changes, especially in the brain. Most are now convinced it is a form of encephalitis or autoimmune disease and because many with M.E. are very ill, a researcher has called the disease «non-HIV AIDS.» I think this is a good description, because our body feels so fragile that it can almost not tolerate anything. Some are actually so ill that they have to live completely isolated in dark rooms, almost like living dead.
Initially my illness felt like having «chronic flu» with many infections and body aches. I almost never felt really fit. In addition I wasn’t able to do much, and got tired much more rapidly than other children. I also had trouble falling asleep and getting up in the morning, and even then I never felt refreshed. As the time has passed, I’ve got more and more symptoms and my body feels as if I should be very old.
At Haukeland hospital [in Bergen, Norway] some people do research using a cancer medicine as treatment for M.E., but the research will probably take a long time. So for now, we have to live with a disease for which there is no effective treatment.
What is the worst?
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The worst thing about having M.E. is not just that you are deprived of your old life and must live most of the life at home and be cared for by your parents. I think actually it’s even worse when we experience not to be believed when we tell we are ill and feel it in our body. It is insulting not to be taken seriously, especially when the doctors do not want to listen to us, but rather tell us what they think about this disease. I sometimes wish that these doctors could feel in their own bodies how we are feeling, before they begin to speculate, judge and make theories about our disease.
I think it’s terrifying when the leading physician for M.E. children in Norway says that he believes our brains are hung up in a stress reaction and that the brain must have «gone in deadlock». I don’t think there are many doctors abroad with knowledge about this disease who believe that. Such statements feel very offensive!
A few years ago, my hospital doctor recommended me a 3-day «quick-fix course» for recovery, I should just change my thoughts and decide to stay healthy. This course is called LP or the Lightening Process. Although I had no particular wish to attend to the course, I felt pushed and participated together with my mom. It was a strange experience to be there and be asked to tell myself over and over again that I was healthy even though I was not. At the course I was also told that it was my own fault if I failed to get well, which I think was a very serious accusation. It amazes me, therefore, that this course is recommended by Norwegian doctors. I know that there are several who have become much worse after these courses, and there have also been suicides. Not long ago, a 13 year-old boy was rescued after a suicide attempt because he felt guilty after taking the LP course without getting well.
School and friends
Getting to school has been a big challenge for me, and it’s been years since I’ve been able to get there. The same goes for my brother. This is not only because we are too weak and get worse by overdoing, but also because our brains suffer from cognitive dysfunction. I know some children with M.E. manage to attend a few hours of school and some manage to have home schooling. That depends on how affected you are by the disease.
It is sad not to be able to live normally and sometimes I miss my friends. But when I’m as ill as I am now, I can’t think so much about this, since I have to save my strength just to survive. I use all my energy to eat and sleep and rest. And that’s hard enough when my body not will cooperate. When I have a lot of pain, I can hardly think of anything else. But luckily I have my brother who is also ill. We understand each other and can do pleasant things together when we are able to. It’s probably a lot worse for those who are suffering alone.
In a way we are lucky to have become ill in the «cyberage» because then we have television and the internet where we can learn a lot and be a little social without too much efforts. There is also a separate forum for M.E. suffering children and youths on Facebook. It is important to find others who understand, because after I became ill with M.E., very few of my previous friends have cared much about me. Instead, I have become close to a few friends and especially to my family, and to me that is equally valuable. It has been an important lesson to discover who my real friends are and I don’t think it’s so important to have many friends as long as you have someone who really cares.
On the positive side, I will also mention that since life has become a bit quiet, I have got more time to think about what really matters in life and I have become more engaged in human values. I have got more time to reflect deeply than many other youths who are often constantly stressed since they have too much to do. In good periods I get the time to delve into things that really interest me and thus I learn a lot in spite of my condition. I hope that I someday may use what I have experienced as ill out in the society.
I must admit that I’m very worried about the future. Not only because of my health, but I am seriously afraid that the Norwegian society will not give M.E. sufferers like my brother and me the opportunity to have dignified lives as adults. When the society constantly focuses on the work-line and that it shall pay off to work, that signals little compassion and respect for those who actually are not able to contribute. I simply miss a more human and fair society.
My mom does a great job along with several other M.E. mums making the M.E. disease better known. They have formed an “M.E. mum group” which has the blog fryvil.com and they have written several letters where they complain about how badly we are met and treated both in health care and society. My letter to You have been presented in the M.E. mom group and 58 of their children and adolescents with M.E. personally support this letter. These other young ME sufferers have contributed to the letter with an attachment containing their own quotations and pictures of themselves to illustrate the disease.
My intention with this letter has been to describe for You the worrisome situation M.E. suffering children and youngsters’ experience in Norway. It is my hope that You will help us to achieve a better understanding and respect in the Norwegian society for this highly misunderstood disease. Then perhaps Norway one day could become the best country in the world to live in, also for M.E. patients?
Finally, I will use this opportunity to wish You and Your family a Merry Christmas and a Happy New Year!
Martin Qvist Giercksky
(age 17, ME sufferer for 8 years)
Prime minister Erna Solberg
Minister of Health Bent Høie
Minister of Children, Equality and Social Inclusion Solveig Horne
Minister of Education and Research Torbjørn Røe Isaksen
Leader of the Labour Party Jonas Gahr Støre
The Ombudsman for children’s rights, Anne Lindboe
The Norwegian ME Organisation
Attachment 1 – Quotations
Quotes from the 58 ME children and youth that support the content of the letter to King Harald:
”I don’t really remember what it is like to be healthy any more.” (girl, 15, with ME)
”I wish that some of those who think I should do more than my body can manage, get a sick child too, then they would understand what it is like for me. – But then I don’t wish anybody to suffer like I do.» (Boy 12, with ME)
”I was at school today. School is the best for me. At school I feel different than at home. I don’t feel sick and everything is very positive, but even when I feel healthy and strong during the lesson at school, I get exhausted afterwards. It is so nice to be at school. Sometimes I get restless inside and all I want is to go to school, but then I can’t because it is to exhausting, so I can’t go all the time. Imagine if you were eating your favourite food, only multiplied by ten, but between every little bite you take you have to wait 5 minutes before you take the next, this is what it is like.” (Boy, 12, with ME)
”I do not understand the point of living anymore. Mom, will I ever get help?” (Boy, 15, with ME)
”I feel bad now (nauceous, dizzy, feverish, pains in the entire body), but it is worth it. This was the best day ever – a normal day! (This ”normal” day was two hours at school, a little bit of homework and a short hour at a friend’s house). I look forward to days like this”. (Boy, 12, with ME)
“Mom, at least I don’t need a wheelchair.” (girl, 14, with ME)
”I feel like a zombie.” (girl, 18, with ME)
”I am not able to eat any cake at parties, I get exhausted just by being there.” (boy, 11, with ME)
”Everybody keeps asking me what i do all day, it is strange that they never ask how I am doing…” (girl, 13 with ME)
“Grandpa said I am spoiled, but mom, I am not!» (girl, 9, when she started getting ill with ME)
”I don’t have a life, I am just here at home with you and dad all the time.” (girl, 15 with ME)
”Mom, can you think instead of me, I don’t have the strength to think for myself, could you talk about something I enjoy?” (girl, 13, with ME)
”Today I had a lot of good stuff to eat.» Mom: «Do you remember?» – «I remember what it looks like, but not the names. I don’t remember any of the words.” (girl, 13, with ME)
”But when am I supposed to get better? I didn’t know it was even possible to be sick for this long.” (boy, 8 with ME, after being sick for 6 weeks)
”I am better, but I never feel free, mom. It will catch me again soon.” (boy, 8, with ME)
”But how will we know then, if he is well again, won’t he just fall down again?” (healthy sister, 10, talking about her brother, 8, with ME)
“My cousin just ran up the stairs carrying suitcases, I felt like an 85-year-old. It is not normal that a girl of 15 can’t walk up the stairs!” (girl, 15 with ME)
“I trust my body more than I trust the doctors.” (boy, 13, with ME)
”Mom, when I get well, I will do everything for you! I will be your servant! – But I am not sure I will have the time then.” (girl, 13 with ME)
”I used to be the sporty one, who am I now?” (girl, 13 with ME)
”I know what I want to be when I get healthy, I want to be an archeologist. I want two children, a girl and a boy. What I miss the most is a girlfriend, but that is not possible right now, as I spend most of the time in bed at home.” (boy, 15, with ME)
”I would like the King to see my interview at the Children’s TV News May 12th 2014.” http://tv.nrksuper.no/serie/supernytt/MSUB02008314/12-05-2014 (girl, 12, with ME)
”I think there is something wrong with me, my body is not quite in shape.” (boy, 4 with ME)
”Kill me before I lay eggs.” (boy, 15 with ME)
”The only place I don’t have any pain is at the tip of my nose.” (girl, 15, with ME)
“There is no point in going to see the doctor, he can’t do anything to help anyway.” (girl, 17 with ME)
”What if I never get well, mom. I lay here in bed and year after year of my life just pass by.” (boy, 17, with ME)
”Can I get the education I want when I dont have any grades because of the disease?” (girl, 15, with ME)
”I am freezing and sweating at the same time. I need hot pads on my body and a fan to cool my head, arms and legs. This is exhausting.» (boy, 17, with ME)
”To have ME is like walking on stilts. If you walk too fast you will fall” (boy, 12, with ME)
”Most children in Norway have to go to school and daycare from they are very small. Most of them do not want to start again after summer vacation. It would be nice if school was something you looked forward to, you would learn even more. When you are forced to learn, I think you get more tired and remember less. I’ve got ME and i haven’t been to school for a long time, but i learn a lot anyway, maybe because I really want to learn the little I do? My learning is more natural than at school and then I don’t need to use so much time. In a way the learning happens all by itself. I think this is something to consider.” (boy, 11, with ME)
“I feel like a living dead.” (girl, 17, with ME)
”I was strong enough to dream last night, but now I can’t even think. Did I use all my strength on the dream?” (girl, 13, with ME)
“I feel my future looks bad.” (girl, 18, with ME)
“I don’t want to have children until I am certain that ME is not hereditary. I would not want my children to suffer like I do.” (girl, 26, with ME)
”To ride my bike for 7 minutes going home from school (2 km up hill) was easier for me before than walking the stairs is now.” (girl, 13, with ME)
“I wish doctors could experience how we live with this disease, then they might not just speculate and believe so much about this disease.” (boy, 15, with ME)
“I don’t want to go to day care, granny, they don’t take so good care of me when I get tired as you do.” (boy, 4, with ME)
“This disease has taught me more about how the body works than I would have learned in medical school.” (boy, 13, with ME)
“To have ME feels like constantly having to work the night shift. It is quiet and dark and the body and mind has enough peace to function a little bit better. During the day it is better to sleep.” (boy, 17, with ME)
“I feel like my entire childhood is ruined.” (girl, 18, with ME)
“It feels like I am in a space ship in the dark on Mars. I lay here wondering if I will ever return to Earth and if I will ever see daylight again.” (young man, 27, with ME – in the darkness in a nursing home)
“You roll yourself up like a ball. Pull the knees up and put your arms around them. Let your head rest on the knees. Say you cannot talk right now. Have to breathe. When you look up after a while, I can see your tears running… You cry without a sound. “Mummy, I’m not ready to become a grown-up yet. I’m not ready to turn 18. I still need to be a little girl. I need you, mummy. My life stopped when I was nine. The last time I played – I was nine. I want to be nine and play again… Give me the time… I need to learn to live again, at the same time as I’m afraid not having the strength to live…” (girl, soon 18, with ME)
“When I first started going to school, I was well and healthy. But three months later, I had a throat inflammation and they gave me penicillin. I had to take many cures with penicillin but I didn’t get well. I only got worse and worse. And my strength sort of disappeared from my body. At the end I was so ill that I had to lay in a dark room for 1,5 years. I remember being sad and missing my friends and school. And hugs from mummy and daddy. For a while, I couldn’t get hugs, it hurt too much. Anything that touched me was painful. And light and sound became painful. That’s why I was lying in the dark. It was taken a lot of blood samples. The doctors found that I had mononucleosis and another virus I cannot remember the name. Mononucleosis isn’t dangerous. It’s an infection that passes. Unfortunately some may get a disease after mononucleosis.” (girl, 12, with ME)
“Oh, mum, if I could manage having only two friends for a small birthday celebration! The first time I had two numbers (turned 10), I couldn’t even get out of bed and have any cake. And now it doesn’t look like my body will get better before I turn 11…” (girl, soon 11, with ME)
”If ME had been a visible disease, it would have looked really bad. Then people would have understood how serious this disease is.” (girl, 13, with ME)
”The doctors don’t do anything to help me, they just let me lie here and they don’t care.” (girl, 22, with ME)
”I have relatively good days. I think I must be one of the few who have been well adviced from the beginning, help from a foreign ME doctor and a school who really do their best to help me function and not become more ill. ME has given me a new perspective on life: I appreciate the little things more than I used to. And I really look forward to getting the strength to take showers and wash my hair without the help of mum.» (girl, 16, with ME)