ME epidemic in Norway: Children isolated and tube fed
Published December 15, 2018 at 18:02
Karine path Fjeld and My Haug
OSLO / AURSKOG. The tragedy in Bjärred has shaken Sweden. Two parents chose to end his own and his daughters' lives as children affected by ME / CFS, sometimes called chronic fatigue syndrome.
In Norway, as many children received the controversial diagnosis that is called an epidemic.
The worst affected children are in dark rooms and tube fed. In Sweden, ME / CFS very rare among children. But Reidar Due, chief physician at Akershus University, warns: - This does not stop at the border.
In her kitchen in Aurskog-Høland, just four mil from the Swedish border, says Hege Mathisen Haug, 48, her daughter Mina, 24, for the first time that the girl suffered from ME / CFS, also known as chronic fatigue syndrome.
- I cried on the phone when I called the school and said: "My sick today, too." I carried you into the bathroom, washed up, dressed up and brought you back to bed.
My loved sports and was so ambitious at school she often corrected his Norwegian teachers during lessons. But suddenly she could not get out of bed anymore.
Mina, who was 13 years old when she was diagnosed with ME / CFS, think back to that time:
- There were many who did not believe me at first, including my parents. Much has happened in Norway since.
ME / CFS is no longer an unknown. From left: Karine path Fjeld and her mother Ingunn path Fjeld. My Haug and her mother Hege Mathisen Haug.
Instead speak Norwegian experts on an ME / CFS epidemic. The school year 2016, the entire 270 students away from teaching for three months or longer because of ME / CFS. It corresponds to ten Norwegian school classes.
The entire 14 percent of all those in the same period was away from school for an extended period, it was because of ME / CFS.
Just the numbers have received the Norwegian Government to invest in both research into ME / CFS and better care. The government has, for example, has given SEK 38 million for a pilot project to see how to avoid ME patients tossed about in the health care system. Nevertheless, the already alarming figure may be even higher. Norwegian Prime Minister Erna Solberg believes that there may be an unrecorded.
- There is reason to believe that the numbers are higher because of the lack of reporting, said Erna Solberg to Aftenposten, when the figures presented.
In Norway, ME / CFS at the same time created a heated debate.
Two camps have formed. Those looking for biomarkers - this includes many of the Norwegian patient organization - and those who like Reidar Due, överäkare at Akershus University, believes that there may also be psychological explanations.
None of the groups doubt whether patients' symptoms. Both want the best for those affected.
But several times the search for a solution has gone far over the border conflict and hatred. The dispute is not just about what causes ME but also on how patients should be treated, including the gradual training and cognitive behavioral therapy can help patients.
Consultant Reidar Due believe that Norway ME patient organization working in a way that contributed to the current situation.
- You have been like us cancer compounds and compounds for heart and lung disease in Sweden, says Reidar Due. But there is none of the compounds interferes in treatments. They accept that there is disagreement regarding treatment. But the Norwegian ME Association guides on how to treat adults and how to treat children. They are an association that defines if you have chronic fatigue or if you have ME.
Expressen has sought Norwegian ME Association's lead, but without response. However, they have been active in the Norwegian newspapers. "It is the body that limit, not the psyche," wrote among other Trude Schei, assistant general secretary of the Norwegian ME-association, in 2017, in a debate article in Aftenposten when she protested that ME patients were treated as if they had mental health problems. "Must have little gallows humor"
Just Aurskog-Høland, a one-hour bus ride east of Oslo, is one of the municipalities that make experts are now talking about an epidemic in Norway.
In the beautiful rural municipality with 16 162 inhabitants are unusually many ME sufferers children. Aurskog-Holands ME parent has 30 active members. They help each other with everything from how to fill out forms to get temporary disability how to handle anxiety and suicidal thoughts.
The day Expressen visiting the resort has four mothers and two people with ME daughters gathered in the family Haug cozy villa. Outside in a stable rest of the family horse. Despite the serious topic of conversation is a lot of laughter.
You have to have a little gallows humor, says Hege Haug, smiling. But often it is silent and serious around the kitchen table. Like when Karine path Fjeld, 31, describes the time when she was most ill. Her problems began, just as My Haug, when she was hit by glandular fever. The doctors failed she became affected and she pressed hard body with four jobs, sports and legal studies.
She was accustomed to not have more than four hours of sleep. Now she managed not to go up the stairs in her childhood home. Mom and Dad had to carry her up the stairs when the power ran out. Her brother used to try to raise her spirits by saying that ski star Petter Northug did not have a fraction of Karines will.
It all started when I suddenly could not stand light or sound, says Karine path Fjeld. I lost my memory and could not manage to read. It felt like the body after body betrayed me. I lost my taste ability. I lost the sense of smell. It was nasty. I had to move home to mom and dad.
It is a debilitating disease. I had been drinking on the night table, but I did not drink himself. I did not even call for help, she says. Search - even in Sweden Only four mil from Aurskog-Høland, in Sweden, the situation is quite different.
Here no one speaks of an ME epidemic.
On the Swedish side of the border, according to the National Board as little affected by ME / CFS that it can not disclose the number of victims by municipality, without the risk of pointing out human beings. The Authority has no figures for only children and adolescents, but only figures for those aged 20 or younger who have been treated for ME / CFS in inpatient or physician in the specialized outpatient care. Despite being home to almost twice as many people in Sweden and Norway was in 2016 not more than 115 Swedes under 20 years who are diagnosed.
Counting all Swedes got 479 people care for ME / CFS in 2016. But last year something happened, according to the National Board. The number who received treatment rose significantly to 774 people. In Sweden, among others, the Social Insurance Agency found that the diagnosis is controversial and that there is no consensus on ME / CFS in the medical profession. The government gave in the spring Welfare commissioned to investigate the state of knowledge about ME / CF - report presented at the end of December, and will provide knowledge on healthcare, but also the decision to the agency.
Meanwhile, the tragedy in Bjärred, where two parents chose to end their own and their children's lives, has received considerable attention. Two girls, 11 and 14 years, were found on January 9 this year, killing at home with their parents.
BJÄRRED. Flowers without a family house, in January 2018. The parents murdered daughters and then took his own life, according to police.
Photo: PEO MÖLLER / KVP / EXPRESSEN
This week, the police announced, after approval from the family, the parents of a farewell letter told me that they chose to end his and his daughters' lives. Already in the autumn of 2017, the couple had jointly made the decision.
The reason is that both children diagnosed with the disease ME, chronic fatigue syndrome. In his letter writes the parents that "none of us will be able to live any real life," said police investigator Stefan Svensson during a press conference.
Children must be tube fed
The children who suffer from ME / CFS in Aurskog-Høland comes to the Akershus University Hospital outside Oslo. On the bright and modern child and adolescent clinic says consultant Reidar Due to the doctors and the schools in the municipality now, for all cases of ME and chronic fatigue, have such expertise on the subject that he and his colleagues at the hospital without any concern can leave patients in the municipality care.
I've also thought about that many from Aurskog, says Reidar Due. All from Aurskog've been with me. If everyone has had a chronic fatigue? I do not think so. But someone has got it. But I do not know what caused it. I have my thoughts on it, but I would not say to a journalist.
But we have patients where older siblings have ME, and the mother has ME. See you in a reception room where there are toys and old-fashioned board game in a corner. Reidar Due the phone at his side, ready to respond if he needed somewhere in the clinic. Five of the children he studied have been in bad shape when he received them they needed tube feeding. The worst must lie in a darkened room and have earplugs, said Due. They need to be tube fed and transported by wheelchair because they have such pain. When the light is turned on in a room as they take on the protective goggles directly. It is absolutely terrible experience. School teaching is tailored to help the patients can go to school at least a few hours a week.
It's about one to two hours of school every day, and they run to school by taxi. They need to be able to isolate themselves in school and put in a dark room, lay down on a bench and rest. The we have the most of, says Reidar Due. The hospital will be receiving about 60 patients with ME symptoms each year. He describes what he encounters in the hospital. The "good girl" is overrepresented. - It's usually good dutiful young people who place high demands on himself. Those who are accustomed to go to school despite being sick. And there are more girls are affected. There are four girls for every boy. And they often have experienced things in life that not everyone experienced.
Read more: The medical profession divided on chronic fatigue syndrome and ME.
"Now it's an epidemic"
Reidar Due do not believe that the prevalence of ME / CFS, regardless of the cause behind the disease, stopped by national limit is four mil away. Not that I know Sweden culturally and socio-economically, he says and elaborates:
In Norway, there are five million people. In Sweden, over ten million people. We have followed each other in pediatric oncology. We have followed each other in barnreumatismen. We have followed each other in diabetes. We have followed each other in mental illnesses. I can not believe that the Swedes and Norwegians would have such a large discrepancy in terms of children who have a chronic fatigue diagnosis.
He is supported by Hoyres Anne Grethe Erlandsen, Undersecretary of the Ministry of Health.
I do not think this is something that can be attributed to a boundary between the two countries. I think it's a condition you find everywhere, says Erlandsen on the phone. At Akershus University working child psychologist Betty Van Roy with young people affected by ME / CFS. She joins us in the reception room.
Ten years ago, someone here and there, but now it's an epidemic. Why is that? I do not know, says Betty Van Roy.
But there are parallels that we are so depressed that you can almost believe that half of all young people have a depression. It is, however, a difference between being sad depressed periods of life and to meet the criteria required to have a depressive illness, she says. Betty Van Roy emphasizes the importance of following the criteria of what is ME / CFS, whether you follow it strictly so called Canada model or another is not as exclusive variant.
Now it's easy so that if one is worn out and you have ME, she says, but we must consider that the ME requires more than that you have periods when you feel there is too much going on, and that life is too heavy. In the end, I think otherwise, that everyone here will talk about that they have ME.
Even Betty Van Roy deplores the polarized situation in Norway.
When someone gets fresh with psychological methods or other activities as it is perceived as a threat to the biological says Betty Van Roy. And it can not be said for when you hear that you do not have real ME. It's called: "They have been exhausted and therefore might benefit from cognitive therapy, but they were not the kind of ME that we know is true ME." The polemic around this is not fruitful. "Inflamed debate" about ME
Betty Van Roy believes that early need to identify children who are at risk.
The school has been perhaps a little bit too much respect for absences due to somatic pains today. The school is very observant of absence. When they think it's truancy or school refusal is very quick to act, but if they are told that this is a child who is sick, has a stomach ache and a headache, so it becomes a huge acceptance that the child is absent and sometimes too much tolerance, says Betty Van Roy.
Due hope that Sweden will not have the same "inflamed and inflated debate" about ME / CFS that Norway had.
I believe that a greater tolerance for the various positions are preferred. Now we have gone so far in Norway and there is such a conflict, you can not do anything about it, says Reidar Due. Be open. Our research-related and modern and daring to listen to others and have a greater tolerance for other people's point of view than what we had in Norway. It is very important.
The goal: a normal life
The kitchen in Aurskog-Høland have a good knowledge of what is happening in Sweden regarding the ME. Sufferers and their families keep in touch via social media. Ingunn path Fjeld, 60, chemical engineer, looking lovingly, but vigilant, his daughter. Ingunn remember Karines problems became so severe that she finally dared not sure that her daughter was alive. She had trouble sleeping so when she fell asleep, I thought: "I open the door now, she wakes up and then it all ruined ... But living my girl?". She was so bad, but I did not dare go in and look at her, because I would ruin everything when she finally got five minutes of sleep.
Parents in Bjärred wrote that they could not have "any real life". Ingunn path Fjeld describes a nightmarish existence. I could not take her even if I only approached her behind her back so burned it in her skin.
Both My Haug and Karine path Fjeld have been better without knowing why. But none of them are completely restored. My Haug has had ME for eleven years. Today, she is working with racehorses. Karine path Fjeld is in its twelfth year as sick. Recently, she became the mother of a daughter. Slowly, they try to find their way back to a more normal life. - Two years ago, I had not been able to sit like this, says Karine. I was like living death in the end, she says. I do not understand how sick you are and how desperately they want their lives back.
The World Health Organization classifies ME / CFS as a neurological disorder. The cause flu symptoms and muscle weakness, according Vårdguiden. The disease is often triggered by a common, severe flu, colds or bronchial infection that then do not go over. But the cause of the disease remains unknown and there is still no biological evidence that the disease is about an actual inflammation in the nervous system.
The letters ME stands for "myalgic" (which means "muscle pain") and "Encephalomyelitis" (meaning "the brain and spinal cord inflammation"). CFS is an abbreviation of "chronic fatigue syndrome" the American designation for chronic fatigue syndrome. The Swedish Patient Association National Association for ME patients believe that it is misleading to use the name chronic fatigue syndrome as the fatigue is just one of many symptoms and that the disease is not to be confused with another chronic fatigue.
January Lilie Mark, Director at the SBU, the Swedish Council for medical and social assessment in Stockholm has been a professor at the Medical Products Agency in Uppsala and PhD in pharmacokinetics (the study of drug metabolism in the body). He has previously stated in Expressen that ME / CFS diagnosis is controversial among doctors.
It's a hot potato, because we scientists do not know what the disease is due. Although there are diagnostic criteria, but they are not entirely well-defined and without the knowledge of the state's cause, it is difficult to conduct research in the area, said Jan Lilie Mark.
Last spring, the Board was commissioned by the government to investigate the state of knowledge about ME. It should result in providing knowledge to health care, but also the decision to the agency. National Board reports its findings by the end of December.
Already last fall called for Social Insurance to information from the National Board regarding sick leave length for ME. This is because the authority considers that there is no consensus on the ME within the medical profession.