NICE has paused the publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS), “because of issues raised during the pre-publication period with the final guideline”.

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, said the clinical watchdog.

NICE said it used its usual “rigorous methodology” and process in developing the guideline but despite its best efforts and the “real, lived experience and testimony of people with ME/CFS”, it was not able to produce a guideline “that is supported by all”.

Unless the guidelines are supported and implemented by professionals and the NHS, people with ME/CFS may not get the care and help they need, NICE concluded. It added that it is exploring ways of achieving universal support for its recommendations with professional and patient stakeholder groups.

It is believed that the new guidelines advised that graded exercise therapy should no longer be offered to people with ME and cognitive behavioural therapy should only be offered to support patients in dealing with the anxiety of being ill. NICE also emphasised the importance of early diagnosis and doctors believing their patients.

Parallels have been noted between ME, most often triggered by a viral infection, and long Covid, which has a similar range of symptoms. 

• The RPS has released a policy document outlining how pharmacy teams in all settings can best support long Covid patients.