Invest in ME - Press Release from Norway's Social and Health Directorate

[24.03.2007 ] The Social and Health Directorate suggest that the Ministry for Health and Care Services establish a national competency network for CFS/ME.

The network will ensure creation of a national knowledgebase and distribution of information as one of several initiatives to improve the situation for people with this illness.

"There is a great lack of knowledge about chronic fatigue syndrome and for those who are affected by this illness this experience comes as an extra burden", says division's director Hans Petter Aarseth from the Social - and Health Directorate.

It is imperative to acknowledge the condition as a serious chronic disease and implement an initiative to develop competence about the condition and how it can be treated. At the same it is necessary to safeguard that the knowledge which we already have becomes more widely known. This demands input from both the municipal social - and health services, specialist health services and research institutes, he says.

The Social and Health Directorate has compiled the report ”Social - and Health Services for patients with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME ) - Challenges and Initiatives". The report comes against a background of a report from the National Knowledge Centre (NICE), reports from health services and input from professional and user organisations.

1. Reinforce the production and distribution of relevant and up to date information of the illness and of meaningful management and care guidelines for social, health, school and NAV (Work and Welfare) staff.

2. Reinforce patient organisations' possibilities for distribution of information to patients, relatives and professionals.

3. Municipalities must offer investigative, management, care and rehabilitation services (institution- or home- based) which take into account the individual needs of the patient with CFS/ME and their relatives. These services must be formulated into a multi-disciplinary, individual care plan and must take into account co-morbidities, general condition, prevention of complications and address educational and professional rehabilitation together with respite care for family members.

4. Patients with CFS/ME have a need for essential healthcare, if necessary in specialist health services. The health service must ensure there is sufficient investigative, management and rehabilitation services in all health regions. There must be a focus on the way the illness presents itself in individuals so that symptom-management, general condition, prevention of complications and individual set-up are at the heart of the treatment. Teaching hospitals and rehabilitation institutes can be actual arenas for development of specialist services.

The municipalities and health services must clarify responsibility and required roles and responsibilities in a continuing management dialogue, e.g. on guidelines for habilitation and rehabilitation.

5. Strengthen research within general medicine, biomedicine, psychosomatic medicine, physical health and health service research. The research must be carried out both against underlying illness mechanism, triggering factors, and against development of safe and effective diagnostic methods, curative and alleviative management, and care and rehabilitation.

6. Establish a national competency network for CFS/ME. The network shall ensure a national knowledgebase and publicising of the condition. This becomes central to the issue of CFS/ME becoming recognised as a clinical entity. It is important that there is close contact within clinical activity, so that analysis, management and research is carried out within disciplines in the network. The network will be set up to follow international professional development, together with contributing to establishing quality control and establishment of national diagnostic criteria, professional advice and models for good individual patient courses. The network must help to establish a quality benchmark for CFS/ME.

7. Projects concerning children and young people and the most severely affected must have special priority. A time-limited project for research, knowledgebase construction and knowledge distribution about children and young people with CFS/ME must be established in a professional environment with broad clinical and research-oriented experience. The objective for the project must be to raise expertise at all levels in the health service so that result of the project can be implemented by all regional health services.

8. Analyse the need for satisfactorily taking care of young sufferers' needs, aligning employment and welfare issues in the Social Services' laws with the special consideration and needs of people with CFS/ME.