From Tate Michell via Co-cure:
Bergens Tidende Wednesday 12 March 2014
One year after the recent ME cure at Haukeland Maria Gjerpe still fresh. Now she will develop new digital services for health care.
You have been diagnosed with ME (Myalgic Encephalopathy) in several years. How are you now?
Apart from that I'm struggling with a cold, I feel fresh. Now it is exactly one year since I received the last dose. I'm even lucky that I have been headhunted for a new job as special adviser in the Directorate of Health. Where should I develop digital services on site Helsenorge.no. The key is e-health, which gives a whole new health landscape, where the patient is sitting in the driver's seat.
What is the concept of e-health?
Roughly speaking, it's about all the use of technological tools. It can range from an overview of their medicines, to book doctor's appointments and have dialogue with the doctor online.
You are an MD and experience as ME sick. Was it the doctor or the patient who was headhunted?
The unique combination, I think. The relationship between doctor and patient is also something I've written about both on my blog and in book form.
Is ME the same as chronic fatigue syndrome?
No, it's not the same. Chronic fatigue syndrome is a broad term, such as "stomach ache" is. ME is a disease diagnosis in the same manner as appendicitis. Historically, there has been a confusion between the various names and perception of the disease. That is why I raised money for research. I will have the knowledge and treatment, not just assumptions and stigma.
Through action MEandYou collected in the last year the 2.9 million kroner to ME research at Haukeland University Hospital. Are you watching what they do with the money you obtained?
Researchers have spent some time trying to tweak the protocol, which should be ready one of these days. Once approved, the attempt is initiated. In the study, the medicine I got tested in a large so-called double-blind test. Then our money to good.
You were even among the first people to try the cancer drug Rituximab against ME. Are you convinced that it was this that made you well?
There is nothing else that has done me well in the past, and I have tried very much. I have struggled with ME since I was 16 and at times I lay in bed 21 of the 24 hours. Now I'm at work and I cross my fingers that it holds. Tests show that B-cell values are low, as they should be. The researchers believe there is something around the b-cells, which are white blood cells that make us sick.
Do you still have contact with the ME Association and other ME sick?
I have daily contact with ME sufferers and has received hundreds of inquiries. It is not necessarily so much I can do, other than to listen and give advice. Sometimes I feel that my physician task in this context to patches wounds that other doctors had made. ME is the most controversial disease we have in Norway.