While acknowledging the reality of the symptoms associated with these conditions, the consortium suggests that they likely stem from the complex interplay of biological, psychological, and social factors, rather than a singular disease process. Potential contributing factors include the enduring activation of the neurobiological stress response, accompanied by corresponding changes in immunological, hormonal, cognitive, and behavioral domains.

Furthermore, the consortium posits that symptoms are more likely to persist when perceived as threatening, leading to the avoidance of activities believed to exacerbate them. They also question the conventional approach of prolonged rest, social isolation, and sensory deprivation as the best coping strategy. Instead, they advocate for a path to recovery that involves helping patients develop a less threatening understanding of their symptoms and supporting their gradual return to normal activities.

The Oslo Chronic Fatigue Consortium calls for an inclusive and constructive dialogue surrounding these conditions. This dialogue should encompass a diverse range of perspectives, including those of patients who have recovered.

Their proposition, known as the Oslo Statement on chronic fatigue conditions, is published in the Scandinavian Journal of Primary Health Care in September 2023. The key implication of their stated viewpoint is that these illnesses are neither mysterious nor untreatable and that with the right assistance, patients can improve and even recover.

Michael Sharpe MD, one of the authors and Emeritus Professor at the University of Oxford, said: ‘Patients desperately need better ways of understanding these disabling illnesses that both recognize them as real, and which also provide a positive and empowering route to improvement and even recovery.’

Summary of the published paper

The ‘Oslo Chronic Fatigue Consortium’ consists of researchers and clinicians who question the current narrative that chronic fatigue syndromes, including post-covid conditions, are incurable diseases. Instead, we propose an alternative view, based on research, which offers more hope to patients. Whilst we regard the symptoms of these conditions as real, we propose that they are more likely to reflect the brain’s response to a range of biological, psychological, and social factors, rather than a specific disease process. Possible causes include persistent activation of the neurobiological stress response, accompanied by associated changes in immunological, hormonal, cognitive and behavioural domains. We further propose that the symptoms are more likely to persist if they are perceived as threatening, and all activities that are perceived to worsen them are avoided. We also question the idea that the best way to cope with the illness is by prolonged rest, social isolation, and sensory deprivation. Instead, we propose that recovery is often possible if patients are helped to adopt a less threatening understanding of their symptoms and are supported in a gradual return to normal activities. Finally, we call for a much more open and constructive dialogue about these conditions. This dialogue should include a wider range of views, including those of patients who have recovered from them.

KEY POINTS from the paper

1. Challenging Misconceptions: Contrary to common belief, severe fatigue syndromes are not necessarily incurable; improvement and even recovery is indeed possible.
2. Limitations of Current Labels: Existing specific diagnostic labels like myalgic encephalomyelitis/ chronic fatigue syndrome, post-covid19 syndrome, exhaustion syndrome, and burnout, each with their own different treatment, may be misleading as the symptoms of these conditions overlap.
3. Taking a holistic perspective: After over 40 years of research on CFS/ME, no specific biological pathology has yet been identified. We therefore propose that it is time to consider a more holistic view, encompassing biological, psychological, and social factors.
4. Real Symptoms produced by the brain: The symptoms are undoubtedly real, but they may not always indicate bodily disease. Symptoms are ultimately all perceived in the brain and can arise purely from activities of the brain’s neural networks.
5. The Conditions can be understood: The symptoms of these illnesses can be understood as adaptive responses evolved through evolution to keep us safe by signalling issues like tissue damage and resource depletion.
6. Balancing Activity and Rest: Following an initial rest period, gradual and supervised activity is important for rehabilitation. Fatigue and other symptoms following activity do not necessarily indicate danger or lack of energy. Instead, a gradual approach to increasing activity, supported by credible explanations of the symptoms increase the chances of recovery.
7. Ethical and Inclusive Approach: Some patients have faced mistrust and dismissal of their symptoms, perhaps resulting in a defensive narrative that downplays the role of psychological and social factors. It is crucial that we adopt an ethical and inclusive approach, that allows us to develop and evaluate a wide range of treatments, including those that involve psychological and social aspects.
8. Valuing the Patient Perspective: The patient´s voice is important. The voice of patients who have improved or recovered through cognitive, behavioural, or stress reduction strategies can offer valuable insights and should also be heard.
9. A Potentially Harmful Perspective: Portraying these conditions as incurable diseases, not only fuels fear, hopelessness and patient disempowerment, but may also be harmful as it impedes effective treatment programs and recovery.
10. An urgent Need for more Open Dialogue: There is an urgent need for a more open public dialogue about the understanding and treatment of these conditions.