This spring, The ME Parents of Norway has not only studied the Directorate of Health’s draft for a new clinical guideline in depth. We have also examined parallel processes, reports, and international initiatives in the field.
As a result of this work, we have come to realize that the draft is about a lot more than a Norwegian clinical guideline. It is part of a broader international trend in which ME is, in some countries, being placed within a common framework for chronic fatigue. This makes the implications of the guideline far more significant than the draft itself suggests.
Against this background, in March we made a formal resolution calling for a separate clinical guideline for ME:
1) ME-foreldrene cannot support a guideline that conflates the disease ME with various fatigue conditions, thereby obscuring ME as a distinct diagnosis with strict diagnostic criteria. ME and chronic fatigue are different diagnoses.
2) A shared guideline means shared clinical pathways and shared centres of expertise.
We cannot accept that.
Anything else would set us back decades and make Norway an international outlier in relation to ME and other post-infectious illnesses. (Whether Long Covid with PEM should be included in such a guideline is a separate discussion, but naturally we are open to that, as reflected in our response to the hearing, where we include other post-infectious illnesses involving PEM.)
Below we present a concrete example of why the question of a separate versus a shared guideline is far from merely theoretical.
Earlier this year, both the Norwegian ME Association and The ME Parents of Norway submitted inquiries to the South-Eastern Norway Regional Health Authority (Helse Sør-Øst) regarding the future of the National Competence Service for CFS/ME. Helse Sør-Øst chose to respond jointly to both organisations. However, the response was sent not only to us, but also to the Norwegian Covid Association and Recovery Norway. (See Discussion with Helse Sør-Øst on the Future Organisation of the National Competence Service for CFS/ME, in Norwegian.)
This illustrates what is likely to happen if ME is incorporated into a joint guideline for «chronic fatigue, including ME/CFS». It assumes that organisations and professional groups with fundamentally different understandings of these conditions represent the same field and should therefore participate together in decisions concerning centres of expertise, clinical pathways, and service development.
In our view, this would remain problematic even if the specific care pathways within such a shared guideline were significantly improved and more clearly defined than they are in the guideline draft. Once the framework is shared, healthcare services will inevitably interpret it as one unified field. That will influence who is invited to participate, which centres of expertise are established, which patient pathways are developed, and ultimately which understanding of the illness gains authority.
We already know which professional groups are most actively promoting their perspective within this field. There is little reason to believe that a shared guideline would suddenly attract large numbers of professionals with strong biomedical expertise in ME who are willing to devote substantial time to promoting their knowledge and experience.
This would further reinforce the existing imbalance, since many of the leading biomedical experts naturally prioritise research and patient care over extensive involvement in professional politics and public debate.
There is a considerable risk that centres of expertise will instead become dominated by professionals who already work within broader rehabilitation, coping, or functional frameworks. In that case, it matters little if the care pathways appear more appropriate on paper, if the common overarching structure still places ME within the wrong professional framework.
Nor is it a convincing argument that some general practitioners might not consult a standalone ME guideline. This has been one of the Directorate’s justifications for incorporating ME into a broader fatigue guideline. A guideline based on up-to-date research, diagnostic precision, and international scientific consensus will, over time, become the professional standard to which healthcare services must adhere. It will also require centres of expertise built upon those same principles. In the long run, general practitioners, municipalities, specialist healthcare services, schools, and the Norwegian Labour and Welfare Administration (NAV) will all need to rely on that expertise. This is how the field can be moved in the right direction.
The fact that Helse Sør-Øst already copied Recovery Norway into its response to an inquiry from the Norwegian ME Association and ME-foreldrene concerning the National Competence Service for CFS/ME demonstrates how quickly a «shared guideline» becomes a «shared field.» We believe we must fight for a guideline in which anything other than a biomedical approach to ME is considered unacceptable.
In our response to the hearing, what we wrote regarding patient involvement in the process is equally important. The title and fundamental premise of the guideline had already been decided and were never genuinely open for discussion. We also objected to the inclusion of Recovery Norway, and to the fact that they were given two representatives, but the Directorate was unwilling to consider our concerns.
This is ultimately a struggle over who has the authority to define the field. We are witnessing how institutional structures and systems shape tomorrow’s healthcare services, creating a genuine risk that ME will disappear into a broad and poorly defined concept of chronic fatigue. That would harm people with ME of all ages for many years to come.
We are deeply concerned about the direction in which the ME field is developing in Norway!
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First published in Norwegian, 20th May 2026 by ME-foreldrene / The ME Parents of Norway