What name is given to the disease?
ME is used by the patients, but officially ME/CFS is used
ME used in press and public
Estimated numbers of patients
Between 12-20000. No reliable numbers. Below 15 years of age, a definite increase happened between 2004-2008. Perhaps a 5-8 fold increase, staying constant since. Bergen is sole regional diagnostic facility below 15 years. Represents 10% of Norway´s 5 mill population. Approximately 15-20 newly diagnosed per year in Hordaland with Jason criteria ME. If nationally representative: 150-200 new/ year in Norway < 15 years of age. The National Health Registry found 1800 new patients < 35 years of age diagnosed every year with G93.3 ME in 2014, 2015 and 2016. There has been a definite increase in patients diagnosed. From 2009-2015 there was a 5-fold increase in nationally registered new ME diagnosis- but only those from specialists were included. There are no reliable numbers regarding the number with severe or very severe ME. A recent questionnaire based query from the national ME patient association targeting severe/ very severe ME received nearly 600 responses. This number probably underestimates the real prevalence.
Status of recognition
It has been recognised since 1995 (Rigstrygdverket) Very variable between regions and even across time. Person-dependant. National Centre for CFSME (not a large unit- about 2 people) have guidelines that are fairly “neutral”, in practice. However, they advocate a bio-psycho-social (BPS) model. In practice: A biological trigger with psychosomatically caused sustaining.
Specialism used to treat ME
Two professional views. Unfortunately, The Norwegian Competence Centre for ME has been biased and has prioritized the psychological part. Mostly private doctors look at it seriously, but the usual family doctors can do the diagnosis, but have not much knowledge. Some clinics within the specialist service also do diagnosis. Rehab centres lack knowledge of how to treat ME-patients Paediatrics: Usually child neurology or general paediatrics. Adult: Varies. Internal medicine. Neurology (though they do not want it).
Average time before diagnosis
Can often take one year Paediatrics (below 15 or 18 area dependant): Typically 6 months- 1 year.
Health Directorate is recommending Canada criteria National guidelines. Local guidelines.
Disability status of patients
This varies depending on doctors and the system. Many have got disability benefit, but many are denied Disability status given for adults depending on severity and possibly documented rehabilitation effort (?)
The situation is not satisfactory. There is a strong connection with British psychosomatic (BPS) based approach.