SNP MP Carol Monaghan has slammed the National Institute for Health Care Excellence (NICE) for delaying its promised guideline on the diagnosis and management of Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS).

Monaghan, who is chair of the all-party parliamentary group on ME/CFS, said that people with the disease are dismayed that the publication of the new NICE guideline has been delayed without sufficient prior warning.

The new guideline was expected to be released yesterday, but NICE released a statement confirming a delay because the proposed guideline had not received the full support necessary for its introduction.

NICE stated: “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.

“Because of issues raised during the pre-publication period with the final guideline, we need to take time to consider next steps. We will hold conversations with professional and patient stakeholder groups to do this. We need to do this so that the guideline is supported.”

Monaghan said that it is anticipated that the new guideline will significantly improve upon the previous version published in 2007 in updating medical practice to match the latest scientific evidence on ME. The new guideline withdraws support for treatments, such as graded exercise therapy (GET), which are not based on robust science and have been shown to harm people with ME. 

The MP for Glasgow North West also said that ME patient groups and charities are apprehensive that considerable delays will hinder essential reforms to ME patient care. 

Monaghan said: “I have watched the media dialogue around the new NICE guideline heat up during the months following the release of the draft. While I recognise that it may require time for the new guideline to be acknowledged by some within the medical community, it is of vital importance that medical professionals take notice of the patient voice and the science. 

 "The guideline release should not be postponed any further. It has taken three years to get to this stage, and it is clear that the NICE committee have been rigorous in their assessment of all relevant forms of evidence.

“People with ME can wait no longer for improved care and support, and I appeal to NICE to publish the new guideline without delay.”