NICE has paused the publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS), it has announced.
It said there were ‘strong views’ around the management of the condition and that it had halted publication of the guideline because it was not ‘supported by all’.
In a press statement published yesterday, NICE said it had decided to ‘take time to consider next steps’ due to ‘issues raised’ with the final guideline during the pre-publication period.
It said: ‘The guideline recognises that ME/CFS is a complex, multi-system, chronic medical condition where there is no “one size fits all” approach to managing symptoms.
‘The causes of ME/CFS are still poorly understood and because of this there are strong views around the management of this debilitating condition.’
The statement added: ‘NICE has used its usual rigorous methodology and process in developing this guideline but despite the best efforts of the committee, that followed these to the letter to bring together the available evidence and the real, lived experience and testimony of people with ME/CFS, we have not been able to produce a guideline that is supported by all.’
It has been reported that several members of the guideline committee left the group last month, while various patient groups and charities have criticised the delay.
Sian Leary, spokesperson for #MEAction UK, said: ‘At a time when NICE needs to show strength, and to back their own independent processes, they have instead shown a depressing level of weakness. They are capitulating to the vested interests of those who support graded exercise therapy, instead of standing up for the thousands of people being harmed.’
NICE thanked those who had contributed ‘diligently’ to the halted chronic fatigue guideline and pledged to hold ‘conversations’ with professional and patient stakeholder groups to rally support.
However, it added that ‘in order to have the desired impact, the recommendations must be supported by those who will implement them and NICE will now explore if this support can be achieved’.
The Royal College of Paediatrics and Child Health (RCPCH), said it was ‘very pleased’ that the process had been paused.
It added: ‘We look forward to working with NICE to ensure that future guidance is of benefit to children, young people and those who manage their care.’
It comes as long Covid is still affecting about a million people in the UK, with the number of patients living with symptoms – of which the most common is fatigue – for many months on the rise.
NHS England announced in June that GPs will soon be able to refer children and young people to new long Covid clinics as the specialist services are expanded.