Reworked NICE advice on ME/CFS warns against 'one-size-fits-all' approach

Updated NICE guidance on ME/chronic fatigue syndrome highlights the need for personalised management plans for patients with the condition - acknowledging that there is no 'one-size-fits-all' approach for managing symptoms.

GP consultation: updated NICE advice (Photo: sturti/Getty Images)
GP consultation: updated NICE advice (Photo: sturti/Getty Images)

Updated advice has been published by the watchdog two months after it delayed earlier plans to publish in an update in August over a lack of support from patient and professional groups.

NICE said it had held a 'successful roundtable discussion' to discuss concerns with the updated guidance and had added 'explanatory detail' to some sections to improve the clarity of its recommendations. The watchdog said it was 'now confident that the guideline can be effectively implemented across the system'.

The updated guideline on ME/CFS covers diagnosis and management of the condition in children, young people and adults, providing advice on 'identification and assessment before and after diagnosis to its management, monitoring and review'.

ME/CFS advice

It describes ME/CFS as a 'complex, multi-system, chronic medical condition where there is no one size fits all approach to managing symptoms'.

ME/CFS is a debilitating fatigue that is worsened by activity, post-exertional malaise, unrefreshing sleep or sleep disturbance, and cognitive difficulties, the advice says - warning that any programme 'based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy (GET), should not be offered for the treatment of ME/CFS'.

Supporting patients to access care earlier may improve long-term outcomes and management, the NICE advice says - and it backs a reduction from four to three months in the minimum time for which a person must have persistent symptoms to be diagnosed with ME/CFS.

The updated NICE advice emphasises the need for 'individually tailored support' for patients with the condition, focused on 'personal agreed goals' and tailored to patients' preferences and priorities.

NICE guidance

Paul Chrisp, director of the Centre for Guidelines at NICE, said: 'As well as bringing together the best available scientific evidence, we’ve also listened to the real, lived experience and testimony of people with ME/CFS to produce a balanced guideline which has their wellbeing at its heart. NICE hopes that system partners and the ME/CFS community will work together to make sure these important recommendations are implemented.'

Peter Barry, consultant clinical advisor for NICE and chair of the guideline committee, said: 'This guideline will provide clear support for people living with ME/CFS, their families and carers, and for clinicians. It recognises that ME/CFS is a complex, chronic medical condition that can have a significant effect on people's quality of life.

'We know that people with ME/CFS have had difficulty in getting their illness acknowledged, and the guideline provides guidance for suspecting and diagnosing the condition, recognising that there is no specific test for it. The guideline emphasises the importance of a personalised management plan for areas such as energy management - including the importance of rest and staying within the individual’s energy limits - the treatment of specific symptoms, and guidance on managing flares and exacerbations.'

Charity ME Research UK said: 'We broadly welcome this significant update and improvement to the previous 14-year-old document, but it marks only the beginning of the transformation needed for ME to be more fully understood and, ultimately, for a cure to be found.

'NICE’s recommendations highlight the need for research into diagnostic criteria and tests, as well as health-outcome measures, but these will not be fulfilled without researchers, healthcare professionals and funders working together to understand the causes of the illness and the effects it has on bodily systems.

'Research from numerous studies informed the changes to the guideline, but it is clear that further progress depends on increased research and the availability of funding to make this work a reality.'

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