NICE has published its updated guidance for myalgic encephalomyelitis (ME/CFS) – a chronic fatigue syndrome, covering every aspect of it in children, young people and adults.

The guideline covers its effect right from its identification, assessment before and after diagnosis to its management, monitoring and review.

There are more than 250,000 people in England and Wales with ME/CFS condition, with about 2.4 times as many women affected as men.

NICE has taken testimony of people suffering with the syndrome to produce a balanced guideline, said Paul Chrisp, director of the Centre for Guidelines at NICE.

He added: “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.”

Recognising that ME/CFS is a complex, chronic medical condition with no specific test for it, the guideline emphasises the importance of a personalised management plan for energy management, treatment of specific symptoms, and guidance on managing flares and exacerbations.

It identifies the symptoms of ME/CFS as debilitating fatigue, post-exertional malaise, sleep disturbance, and cognitive difficulties (‘brain fog’).

It says that people with all four symptoms that have lasted three months or more should be directed to a ME/CFS specialist team to confirm their diagnosis and develop a holistic personalized management plan.

Further, cognitive behavioral therapy (CBT), which was considered to be a cure, should only be offered to manage symptoms, improve functioning and reduce distress of ME/CFS patients.

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