Written by sister, Camara Lundestad Joof

Totally sick

When I was 14 years old, I got infected with mononucleosis on a White Buses trip to Poland.

Back home again I infected my younger sister, she was 11. I got so sick I had to be admitted to hospital with pneumonia and a weakened immune system, and the post-viral symptoms were so strong that I was absent from middle school for over a year. I had to spend four years to complete high school.

During my early twenties I recovered, with a massive support system to back me up; family, sympathetic bosses, doctors and the Norwegian Labour and Welfare Administration.
The taxpayers paid my rent while I got back on my feet again. Today I pay my taxes with pleasure and gratitude. I just still have to remember to get enough rest.

My younger sister never recovered. She developed ME (Myalgic Encephalomyelitis), also known as Chronic Fatigue Syndrome or CFS, and she has been diagnosed with chronic illness since she was 12 years old.

The reason why I’m writing this, with my sister as writing partner lying on the sofa in my apartment, is that these days there is a debate in the Norwegian research community about one of the more controversial forms of interventions for ME; Lightning Process, also called LP.

I’m not a researcher, and shouldn’t have too strong opinions about how professionals should perform their job. But I am a next-of-kin, so I follow the debate closely. I hope more people will. I’m healthy. We who are healthy must use our voices, because it is so true that one ought to be healthy in order to be sick, in the face of the combination of suspicion and cheering of ME patients.

The most worrying aspect about observing my sister after she had been treated with Lightning Process, was how I felt she had been trained to lie. She was to answer all questions in a positive way, because if she let in any negative thoughts, she would make herself sick again. When I asked her how she was doing, she answered that she was “bubbling over with energy”. When I asked if she wanted to go to the movies, she answered “YES”. When I asked about her symptoms, such as the acute muscle pain, she replied that she did not “do” muscle pain anymore, because her symptoms were not something she had, it was something she did, and with rephrasing she could also take responsibility for them.

She became very positive in all settings. So positive that her doctor said this had led to good results. So positive that she applied for and got a job.

Then she collapsed again. Significantly worse than she had been before the course, sicker than she was when she was as a child. Her story is not unique: the ME Association’s user survey from 2013 showed that 49% of the 166 patients who had participated at an LP course reported of “deterioration” or “major deterioration” of their health.

In 2016 Nafkam (Norway’s National Research Center in Complementary and Alternative Medicine) reported that there is no scientific reason to claim that LP works, or that it’s safe to use. When you say that ME is something that can be gone by thoughts or motivation, you put the burden of recovery on the patient.

The responsibility is removed from the health services, from the doctors and the authorities. If you are bed bound you have yourself to blame. Your illness becomes a choice, and you just don’t want to get up enough. That’s pretty sick.

This is a translation of an excerpt first published in Dagbladet. You can read the entire text here:
https://www.dagbladet.no/meninger/helt-sykt/73316022