Charities representing people with ME/CFS have said they are ‘shocked’ at a decision to pause the publication of national guidelines on the diagnosis and management of the medical condition.

The National Institute for Health and Care Excellence (NICE) yesterday announced that it is pausing the publication of its updated guideline on the diagnosis and management of myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome (ME/CFS).

The decision was taken due to ‘issues raised during the pre-publication period with the final guideline’, according to the national health body.

‘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,’ NICE’s statement read.

A statement, co-signed by Forward ME, Action for ME, ME Association, Doctors for ME, and ME Research UK, said the sector was ‘shocked and hugely disappointed’ to hear of the last minute delay.

‘The new NICE guidelines bring clinical practice up to date with current scientific knowledge regarding ME. Delays will hold-off still further the desperately needed improvements to patient care,’ the statement read.

‘Many medical professionals, researchers and patient representatives have spent three years diligently reviewing and assessing the evidence. The document has been approved by the committee and should be published.’

The statement continued: ‘The document removes support for therapies driven by outdated views regarding treatment for ME which are no longer supported by the science. We understand these new guidelines may take time to become accepted by elements of the medical community, but they should not be delayed.

‘No minority party should be able to undermine the careful scientific consensus established by the NICE committee and the rigorous work that has been undertaken in good faith.

‘We urge NICE to publish this important work without delay, so doctors can get on and support patients with this often devastating disease.’