A recent debate in the Danish journal Sundhedspolitisk Tidsskrift highlighted a contentious discussion over how ME/CFS is understood in the Kingdom. Across several opinion pieces around four themes, the discussion explored the question of whether ME/CFS should be viewed as a biomedical disease or as a functional disorder.
- Patient experiences matter
Danish patients report that being labelled with a “functional disorder” often leads to reduced credibility with doctors and social services, which leaves them without proper care and support. Daniel Noti, lecturer, says in his opinion piece:
“The result is that people with a disabling, chronic illness are kept in a no man’s land between the healthcare system and the social welfare system — without any real help.”
Some patients also describe worsening health after undergoing graded exercise therapy (GET) or cognitive behavioural therapy (CBT) – treatments often recommended in the functional model.
2. ME/CFS: How should it be treated?
Professor Per Fink and supporters of the functional model argue that GET and CBT are safe and evidence-based treatments. They also suggest that comments calling such intervensions unsafe hinder patient treatment.
Other voices, such as Emil Nørgaard, challenge this perspective. “A survey of more than 2,000 ME patients (ME Association, 2019) shows the opposite: 81 percent worsened from GET, over a third developed new symptoms — and nearly half experienced worsening from CBT.”
Marie Louise Ilsøe Gustavussen, who lives with ME, says: “I physically collapsed whenever I tried either (GET and CBT). I was then told by the Clinic for Functional Disorders in Aarhus that I ‘could get in touch again if at some point I felt motivated to complete the treatment,’ after which my case was closed.”
3. Power and ethics in treatment
The debate also highlighted the power imbalance between doctors and patients. When clinicians present treatments as the only “correct” approach, patients whose experiences do not fit the model may be marginalised, raising ethical concerns.
In his opinion piece, Per Lykke Søndergaard stated: “There is an asymmetrical power relationship between doctor and patient, because the patient is existentially dependent on the doctor’s advice. Therefore, language of power is poisonous to the patient. The doctor’s language must be ‘the language of friendship’ (Socratic dialogue).”
4. Comparisons with the UK
The Danish debate also referenced developments in the UK. For example, the 2021 NICE guideline for ME/CFS does not treat the disease as a functional disorder.
Daniel Noti says: “In several other countries, steps have been taken in that direction. New guidelines in, among others, the United Kingdom have clearly broken with the idea that ME should be treated as a functional disorder. Denmark should follow suit — and free itself from an approach that has cost patients both their health and their dignity.”
Professor Per Fink disagrees. “The (NICE) guideline has faced severe criticism, and several of the medical participants in the working group resigned in protest.
“When claims are made that graded exercise therapy and cognitive behavioural therapy can be harmful, it can discourage patients from seeking treatment and thereby deny them an opportunity to recover.
“It is scientifically well-documented that there are no significant or lasting side effects from these treatments.”
Conclusion
The Danish debate underscores a deep and continuing divide in some countries over the nature of ME/CFS and its treatment. For patients, the debate is not just academic — it has direct consequences for credibility, access to care, and quality of life.
In highlighting the current position within Denmark, ME Research UK notes with disappointment that progress has yet to be made in accepting ME/CFS as a physical disease. The current official stance is at odds with patient surveys, research findings and with the growing momentum for change. In 2016, following a report from an influential US federal analysis group, the Centers for Disease Control dropped its recommendation that CBT/GET be used to treat ME/CFS. In 2018, the Dutch Health Council – hailing from another major centre of CBT/GET studies – recommended against funding GET studies or using GET to treat ME/CFS. And in 2020, the Mayo Clinic in the USA removed its recommendations for CBT/GET from their website. In 2021, the new NICE guideline emerged with GET being removed and CBT to be offered only as an aid and not a ‘treatment’. It is to be seen which path the first ME/CFS guideline in Australia will take.
The evidence-based process which led to the NICE guideline although rejected by some, was vociferously defended by NICE point-by-point. Further, NICE completed a review in January 2025 of any new evidence to alter its guideline and saw no evidence to make changes. Research evidence firmly backs ME/CFS as a biomedical disease.
*Sunhedspolitisk Tidsskrift: Når uvidenhed gør syge endnu mere syge
