Oslo Chronic Fatigue Consortium: a fresh perspective on chronic fatigue syndromes and post-covid conditions
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.
A fresh perspective on chronic fatigue syndromes and post-covid conditions
o Challenging Misconceptions: Contrary to common belief, severe fatigue syndromes are not necessarily incurable; improvement and even recovery is indeed possible.
o 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.
o 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.
o 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.
o The Conditions can be understood: The symptoms of these illnesses can be understood as adaptive responses evolved through evolution to keep us safe by signaling issues like tissue damage and resource depletion.
o 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.
o 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.
o 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.
o 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.
o 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.