Norway:Standardizing collaborative care pathways for adolescents and adults with idiopathic chronic fatigue and CFS/ME across different public sectors

A project at St. Olavs hospital (the university hospital that is associated with the university in Trondheim/NTNU) has been awarded 7 million NOK from the Research Council of Norway to look at care pathways for adolescents and adults with idiopathic chronic fatigue and CFS/ME. The project period is between 2023-2027.

Project description:
It is common to seek healthcare for chronic fatigue. Patients with extensive loss of function and additional symptoms with of unknown cause are diagnosed with chronic fatigue syndrome (CFS)/ myalgic encephalopathy (ME). Young patients up to age 18, are examined in the specialist healthcare. General practitioners may need to refer patients to the specialist healthcare to exclude other cause or for interdisciplinary examinations in complex cases. Lack of curative treatment may cause a long term need of services from the municipality, school or the Norwegian labour and welfare service (NAV). Many patients have expressed that they meet a lack of understanding, trust and delayed help. Therefore, the healthcare services, schools and NAV need more competence about long-term fatigue and CFS/ME.

This innovation project will develop a strategy for the collaboration between the patient and services involved through collaborative consultations over video. One aim is to increase the service providers' competence about chronic fatigue and CFS/ME. Another aim is to increase the experience of a coherent service for patients with chronic fatigue and CFS/ME. For adolescents, collaborative consultations will be carried out before, during and after the examinations. For adults, collaborative consultations will be carried out after the examinations.

In order to include all perspectives and ensure good communication, a working committee will develop the structure and content based on experiences from patients and stakeholders Thereafter, the new structure and content will be tested. Patients' and stakeholders' experiences with the collaborative consultations will be examined with qualitative interviews. By creating an electronic register, information will also be obtained about diagnoses, patient-reported symptoms and function. Finally, the information collected will be discussed in the working committee and will contribute a modified standard for collaboration for this patient group.

https://prosjektbanken.forskningsradet.no/en/project/FORISS/341408

 

From what I've understood part of the reasoning is that fatigue may turn out to be ME/CFS, so in order to get the ME/CFS patients "early" everyone is included. The development of the care pathway in question can be read about here (Google Translate). "Package process" = "care pathway".

Note the care pathway is only about how services will be organized, not medical care, quote:
"The assignment is limited to focusing on how the offer is organised, not the medical content. The medical subject content must be based on national professional guidelines where they exist, alternatively on the best available knowledge and professional consensus. New professional guides or guidelines must not be drawn up as part of the patient process Lack of evidence from the specialist areas has made the work challenging."