- Here, as there was always music, life and liveliness. Young people coming and going, says Kjersti Krisner as she turns off a mobile alarm. It's half past one in the afternoon, and it's time to help her daughter Katrine (35) to get up and with her personal care.
Then the mother goes through a "light lock" into the pitch-darkness to take her eldest son Bjørnar (37) intravenous nutrition and saline solution. In there in his bedroom, the former Norwegian journalist has remained in the same position since 2005, interrupted only by a ride on the commode every other day.
In two periods - two years each time - lay sister Katrine in equally dark in her room across the hall. At times in total need of care and unable to communicate.
Out in the living room the mother smiles sadly towards a 15 year old photograph where the three children try to outshine each other:
Big Brother Bjørnar had barely started his television career. Sister Katrine ready for a year in the United States.
Little brother Frode, almost healthy, at least much better, of the mysterious illness he became ill with at seven years of age.
- We could have not
have dreamt of what was to come. It shapes your life. But we can not let it steal life's content, says Kjersti and disappears to see to the two eldest children.
Back on the sofa sits the youngest son Frode (28) tanned, well-dressed and apparently vigorous. It is not obvious that he uses an electric wheelchair when he goes out. That he has mostly lived at home since the first year in secondary school, and that on a good day his energy levels only allow him to work a couple of hours on the PC.
- I have been very much improved since my teens, he says, and he is in no doubt that he has a far less angry version of the disease that has affected all three siblings: ME, or chronic fatigue syndrome.
Is she alive?
Doctors were lost when Frode was seriously ill at the age of seven and ailed through elementary school. At one point, the hospital stated that he could not be alone at home, and the mother quit her job as an occupational therapist to care for him.
Today she cares for three adult children.
No one had heard of ME when Frode was diagnosed, and her mother could hardly believe the descriptions she found online.
Today she can even describe how sound of an excavator outside the house can trigger pain and cramping. How she feared that her daughter was dead every time she went into her room in the dark. The slightest touch could trigger violent spasms, so she could not touch her child. She brought her hands gently on Katrine's face. If her eyelids moved, it meant that her daughter was alive.
Now the mother replaces a bag of intravenous nutrition for oldest son Bjørnar in light of a weak headlamp. He is going through a good period and can talk to her for a few minutes at a time.
He'd like to speak with Aftenposten as well. But he knows it would make him worse for a long time. Last time Little brother Frode visited him was on Christmas Eve.
For Bjørnar all sensations are such great stress that care is reduced to a minimum. Outside the room is a stack of Christmas presents he never had the strength to receive, including an outdoor cookbook. At the moment he lives on intravenous nutrition and thin soup of malt bread. But he still dreams of cooking for the family in the garden.
- Life lives in him, even though the disease steals the most part, his mother says.
His old life in his own apartment in Oslo is stored in the basement below him.
For the third time
Autumn 2002 the 25 year old Norwegian journalist called home and said he felt tired.
He struggled to concentrate. He took on the least demanding tasks at work.
He began to drop his bike rides, his gatherings with friends. Just before Christmas he took sick leave. On the day before Christmas Eve his parents drove to Oslo and brought him home. Since then he has lived in his bedroom.
When the son described his ailments the mother got an eerie sense of recognition. She hoped for
a long time that she was wrong. She had two sick children at home.
- Not for the third time! It is not possible, she thought. But today she must conclude that it is now eleven years since Bjørnar was outdoors for the last time. And that neither antibiotics, that made her sister better, gamma globulin, or anything else that has helped other ME sufferers has worked.
- He can have this for life, I have acknowledged that. There must be either wonderful medication. Or a miracle.
She laughs a little.
- But I've always had hope with the desperation. Yes, I can be sad. But I try to never feel sorry for myself.
In addition to three children with ME, Kjersti Krisner has a brother and husband Harald nieces with the disease. The researchers have now begun to look for the reason why some families are particularly affected. The theory is that it may be due to genes, environmental factors or learning patterns in the family. So far there are no results.
The family in Skedsmokorset has no clear answer.
- I think the there must be something genetic, a weakness, says Kjersti but points out that several young people in her children’s circles have been and are sick. At one time, people were afraid of being infected.
Regardless she would like for more humility from both the healthcare system and society.
- There is so much we do not know. But if one gets better by running up a mountain, then everyone cheers . If 100 are helped by antibiotics, it is dismissed as placebo. She sighs.
- The health care system has an inherited arrogance that can go into brutality.
Daughter Katrine has quietly entered the room and crawled up in an armchair with foot support. When she became ill from an infection in 1999, she hoped fervently that she
did not have the same illness as her little brother. Such a rare disease could not strike twice.
- I gave myself six months to recover. I had seen Frode seven years.
She laughs rawly.
- But life has been cancelled since. Studies, work, family, everything. Before, I was incredibly social. Now this is my world.
She nods toward her mother and little brother in sofa group.
Her father Harald has a full time job and does not participate in the world of daytime.
Otherwise he takes his turn.
They get some help from personal assistants. But the parents have not been on vacation or gone away together since 2000.
Do you think many people think that you just have to pull yourself together?
- I know very well that it is difficult to understand this disease. But there is nothing I would rather
do than get better.
Mother takes the word.
- I have worked with the sick, including those dying of lung diseases. It was so important to help them find joy and hope in what they had. Not just miss what they have lost. That our values do not lie in what we do but who we are.
She just told about the good day yesterday when she played board games with his brother and in addition managed to sing and play a little bit of guitar.
- That we have got the values from you means so much, Mum. It has helped us to cope with this life.
The living room becomes silent.
They do not need to say more.
What is ME?
ME / CFS is characterized by unexplained fatigue, with a range of additional symptoms such as pain, reduced concentration and sensitivity to sensory input.
The disease varies, from mild (at least 50% reduction in activity level) to very severe (bedridden and in need of care). Also duration varies greatly.
What causes ME?
There are several theories about the causes of ME. There is disagreement within various areas whether ME is primarily psychological or physical. Often the disease is triggered by an infection, especially well known is mononucleosis / glandular fever. Stressful life events can also trigger ME.
One theory is that CFS may be related to deficiencies in the immune system.
Who gets ME?
Women are affected more often than men, but the reason is not clear. Currently it is unclear which genes predispose to ME, but this is being researched now. No one knows how many people have the disease in Norway. An estimate is between 10,000 and 20,000
How is ME treated?
There is currently no documented treatment that can cure ME.
Different forms of exercise therapy, cognitive therapy, antibiotics and the training programme Lightning Process are used to help ME patients. However, documentation of the methods is controversial.
A major study of the cancer drug Rituximab in ME patients will start in the summer under the direction of Haukeland University Hospital. Once the study is completed, the treatment may be included in the healthcare offerings.
Reference: National Knowledge Centre for CFS/ME, Helsedirektoratet, Haukeland US
The third workshop organised for young / early careeer researchers organised with the
European ME Research Group Early Career Researcher network.
This will take place on 2nd June 2023
More details here.