European ME Alliance –
Press Release June 2011
Press Release from the Norwegian Directorate
Oslo, June 23, 2011
Today the Norwegian Directorate of Health has published their views
of reports from The Foundation for Scientific and Industrial
Research at the Norwegian Institute of Technology (SINTEF Technology
and Society) and Norwegian
Knowledge Centre for the Health Services regarding
the current scientific evidence based knowledge status on ME/CFS,
evaluation of research findings to date, and their recommendations
to the Ministry of Health and Care Services, which has the overall
responsibility for government policy on health and care services in
Many patients are in need of
services based on collaboration between primary and tertiary health
care services. Unfortunately this collaboration does not work well
The Directorate of Health has
responded to the commission from the Ministry of Health and Care
Services, with the following answers regarding main conclusions and
The complete answer from the
Directorate of Health can be found in the attachments listed on the
right side of the website [documents in Norwegian only – see the
links to website below].
Main conclusions based on reports from the
Norwegian Knowledge Centre for the Health Services
Today an evidence based knowledge
base does not exist to justify publishing national instructions
or a guide.
The Directorate of Health, based
on available reports, acknowledges that it will still take time
to build good, robust patient service courses for this group of
The review of current scientific
knowledge does not support an earlier recommendation to use the
The review does not, on a general
basis, support recommendations for individualized exercise
therapy (a form of graded exercise therapy) and/or cognitive
behavioural therapy for all patients with CFS/ME.
Recommendations to the Ministry
The Directorate cannot, on the
basis of the current evidence based review of Professor Kenny De
Meirlier’s research studies, recommend that public finances
should cover expenses for this kind of treatment.
It is recommended to identify
ongoing studies and summary findings from existing research
studies on potential causes and diagnostics.
New research studies and
recommendations of interventions have to be seen in relationship
to the degree of severity of the disease; mild – moderate –
severe – very severe and in relationship to the disease phase
the patient is in; unstable – stabilisation phase – improvement
It is recommended to enhance
funding research aimed at causal factors and treatment.
The facilitation for obtaining and
spreading experience based knowledge through regional experience
conferences will be done.
It is under consideration to
establish a national treatment and competence service for CFS/ME
over a time limited period.
The Biobank at Oslo University
Hospital, Aker, is closely associated with the national service.
It is recommended to establish
ambulant teams for children, young people and adults in all
It is recommended to start working
to develop good models for how children as next of kin to people
with CFS/ME, should be followed up.
It is recommended to establish an
out-patient clinic for CFS/ME in all Health Regional
It is recommended that
rehabilitation services based on experiences and competence from
Sølvskottberget [a rehabilitation clinic where the health
personnel over recent years had gained expertise in ME, but
which was suddenly was shut down by the South-East Regional
It is recommended to establish
regional Health-Education and Coping Courses for patients and
It is recommended to continue the
national wide telephone based information service
[Published June 23, 2011]
Report – published February 28, 2011
Services to patients with CFS/ME in Norway
SINTEF has been commissioned to
work out a status report of the health and care services to patients
with CFS/ME in Norway.
The main objective of this
assignment has been to provide the status for the health and care
services in primary and specialist health services to children,
young people and those most severely affected with CFS/ME. The
report provides an overview over diagnostic tools used in addition
to which diagnoses in accordance with the ICD-10 Coding system that
are used. The data are based on a sample of 60 municipalities (and
three sub areas of Oslo City), 330 general practitioners, all the
Regional Health Authorities and the two patient associations. In
summary, our investigation allows us to draw the following
There is a lack of knowledge on
CFS/ME in the social, welfare and health services. Few
municipalities have established services specifically addressing
the needs of patients with CFS/ME.
Some of the Regional Health
Authorities have not established any specific service to
patients with CFS/ME.
There is a lack of agreement on,
and about implementing diagnostic criteria or CFS/ME.
There is a lack of curative
treatment of CFS/ME.
There is a lack of appropriate
treatment, rehabilitation and caring services to the worst
functioning people with CFS/ME
The plans to establish a service
to the most severely affected with CFS/ME at Oslo University
Hospital has yet to be accomplished.
There is a lack of competence and
insufficient services regarding the special challenges related
to children and young people with CFS/ME.
The main points in this
investigation are largely in line with the conclusion drawn in the
report from The Social and Health Directorate published in 2007.
Commissioner: The Norwegian
Directorate of Health
Norwegian ME Association
Eva Stormorken is a member of the Directorate of
Health' Expert Panel on CFS/ME. Eva has contributed enormously to
the work of the Norwegian MEA over the years, culminating in the
events occurring now. She has written several hundred pages since
2005 which have been submitted to the Directorate of Health and
other Governmental bodies (in association with other members of the
Norwegian ME Association).
(links to Norwegian documents and websites)
The website and the original
Norwegian version of the letter from Directorate of Health to the
Letter from the Norwegian
Directorate of Health to the Ministry of Health and Care Services:
Commission to the
Centre for the Health Services from the Directorate:
Key points – summary of
contributions from members of the Directorate’s Expert Panel of
CFS/ME representing the Norwegian ME Association and the M.E.
Network in Norway:
SINTEF’s website on ME/CFS:
The SINTEF Report on CFS/ME:
SINTEF Technology and Society
(English information about SINTEF):