NORWAY

Kristine:19.04.23

Ahead of my trip to Norway to run Bergen Marathon for biomedical ME research awareness and funding, I spoke to Kristine Nilsen Oma and Luna Anette Løndal about their experiences living with M.E there.

• How did you get ill and how long have you been sick?

Kristine: I have had the diagnosis for 12 years now. But looking back it must have been there for longer, as I constantly had the flu for a couple of years and an infection triggered it into full bloom with no chance of restitution.  

Luna Anette: Most likely after I got mononucleosis when I was 16 years old. I am 33 now.

• Has it been difficult to get diagnosed?

Kristine: At this point I was so ill that they did check everything and I got the diagnosis rather quickly.  

Luna Anette: Yes. It took me years before I got the diagnosis. I was pushing myself for years and in 2019 I got worse. Thankfully I had a new doctor who took my health seriously.

• How does this disease affect you?

Kristine: I lie in bed for 20 hours every day otherwise I get flu and PEM (Post Exertional Malaise).  My ability to concentrate is minimal, and I have strong brainfog and bodily pain. Yet I got a couple of hours every day that I try making full use of. Now I am choreographing 24 dancers from my bed who are performing to collect money to fund ME biomedicinal research. The national dance company is co-producing the work and the local ME union for patients are assisting in organizing the event that creates awareness and attention about ME. I need to use my situation to create value and do what I love: choreograph. We have 5 different political parties coming to hold appeals about what they will do to improve conditions for ME patients. This morning I was called by the right wing party! I must laugh as I suddenly am important enough....(It's election time in Norway). Yet its good and its needed to do this work. I try using my voice to the fullest for all the #millionsmissing.  I refuse to be defeated. I do what I can the 4 hours I have available every day (please visit: https://www.facebook.com/events/828496141736471)

Luna Anette: In every aspect of my life. I can’t be spontaneous. I have to plan every thing I do. Even “little” things like making food.

• How do doctors and authorities perceive ME/CFS in Norway?

Kristine: I don't think I can answer this question with precision, but for me personally from what I understand its not being taken seriously enough. They are holding on to old guidelines and not funding research in a way that proves it matters. My doctor knows less about the illness than I do and I keep teaching her. At least she is willing to listen and try out things to improve certain symptoms. They have a course in place at the local hospital where every "new" ME patient can get information about how to live with ME. After the course you are left alone with no follow up. I keep saying you have to be extremely resourceful to be chronically ill.... 

Luna Anette: Hard to say. I’ve got different experiences myself, but I feel like things may be changing - positively. 

• Do patients receive adequate support?  Are they eligible for benefits?

Kristine: No, we don't get adequate support. I have a pension based on other diagnoses, but the reason I am disabled is ME. I know many ME patients struggle to get a pension. Its been a subject for debate the last year, but nothing has been done. 

Luna Anette: Short answer; no. We are often left to ourselves to figure out how to live with it. I felt lost for a long time.

• What changes would you like to see to in Norway for ME healthcare?

Kristine: Follow up. An interest in helping ME patients. Seriously. If you have cancer you are taken seriously.  If you have ME you are left to yourself. It's absolutely horrible.  

Luna Anette: I would like to see more understanding and knowledge. It doesn’t seem like there is much all around knowledge about the diagnosis.

• What does the future look like for patients in Norway?  Are there reasons to feel positive?

Kristine: The ME union is doing fabulous work!  Nina Steinkopf, Frøydis Lilledalen and Sissel Sunde (and a few others) are doing a fantastic job at raising ME publicly and being a great voice for any ME patient. They give me hope.  There are politicians willing to come to the Millions Missing demonstration on 12th of May which gives me hope.  Realistically I am looking at being ill for the rest of my life unless something is done by funding research. I try not thinking about this too much and being busy with creating value...

​Luna Anette: I hope the future for us is positive in regards of more information, knowledge and understanding. I feel like things are moving forward one step at the time.