Chronic fatigue syndromes should not be seen as “incurable diseases”, scientists have said as they called for a fresh outlook on the conditions to give patients “hope”.
It comes as a new paper suggests that recovery is “often possible”.
Health bodies describe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) as a long-term condition impacting millions of people globally with a wide range of symptoms, the most common of which is extreme tiredness.
It can affect anyone, including children, but is more common in women, and tends to develop when people are between their mid-20s and mid-40s.
The new paper from the Oslo Chronic Fatigue Consortium, suggests that there is not a “specific disease process” behind chronic fatigue syndromes, including “post-Covid conditions”.
The consortium is made up of researchers, clinicians and 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,” they wrote in the Scandinavian Journal of Primary Health Care.
They also said that people living with these conditions should not avoid activities thought to worsen symptoms.
They noted that symptoms are “more likely to persist if they are perceived as threatening, and all activities that are perceived to worsen them are avoided”.
They also suggest that people with chronic fatigue syndromes should avoid “prolonged rest, social isolation and sensory deprivation”.
“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,” the authors wrote.
A UK National Institute for Health and Care Excellence (Nice) guideline, published in 2021, said that graded exercise therapy should no longer be recommended for people with ME/CFS.
The guideline says ME/CFS is a complex condition where there is no “one size fits all” approach to managing symptoms, and says any therapy will depend on the patient’s preferences and should not represent a fixed increase in activity.
The new paper from the consortium states: “The presence of fatigue and other symptoms after activity does not necessarily mean that such activity is dangerous or that there is ‘lack of energy in the body’.
“Rest is beneficial after acute stressors, such as an infection, but a gradual and controlled approach to increasing activity is crucial for rehabilitation.”
The consortium also said current labels – including ME/CFS, post-Covid- 19 syndrome, exhaustion syndrome and burnout – are of “limited value” because they “imply quite different treatments”, but often have overlapping symptoms.
The group said that the “unproven narrative of a disease with no cure can be harmful”, adding: “The narrative of CFS/ME as an incomprehensible and incurable disease without any available treatment is likely to increase fear, helplessness, and loss of hope.” – PA Media/dpa
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