Updated NICE guidance on chronic fatigue syndrome

An update of the National Institute for Health and Care Excellence (NICE) guidelines for diagnosis and management of chronic fatigue syndrome (also known as myalgic encephalomyelitis (CFS/ME)) is open for consultation, closing on 22 December.1 In contrast to the 2007 guidelines,2 which recommended interventions such as cognitive behavioural therapy and graded exercise therapy for people with mild or moderate CFS/ME, the update cites a “lack of evidence for the effectiveness of these interventions” despite the overall positive results of randomised evidence published since 2007.345

Instead, the new draft emphasises the potential harms of exercise, based on qualitative evidence provided by a small number of service users, and the balance has shifted towards helping patients to adjust to the long term debilitating effects of CFS/ME. It also shortens the timescale for diagnosis of CFS/ME, to include patients with symptoms persisting for just 12 weeks, even though the criteria developers recommend six months.6 This change in attitude away from rehabilitative interventions is worrying, as many patients do recover from chronic fatigue symptoms. Importantly, as the covid-19 pandemic shows, although fatigue, post-exertional malaise, and other symptoms may persist for weeks or months after viral illness, symptoms can improve over time with appropriate support and rehabilitation. The proposed update has therefore provoked a highly polarised response.

One fundamental problem is the NICE approach to evaluating evidence. NICE uses the GRADE system, which sets out a series of isolated questions using the PICO (patient, intervention, comparison, and outcome) framework …