NHS Digital for England now features a SNOMED CT UK code for very severe ME/CFS. Until now, it included concepts for ‘mild’, ‘moderate’, and ‘severe’ ME/CFS, but not ‘very severe’ ME/CFS.
SNOMED CT (Systematized Nomenclature of Medicine Clinical Terms) UK classification system now includes –
Very severe chronic fatigue syndrome (disorder)
Very severe chronic fatigue syndrome
Very severe ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)
Very severe myalgic encephalopathy
SNOMED International, a not for profit organisation states that is published code is ‘the world’s most comprehensive clinical terminology’ and they ‘play an essential role in improving human health by determining standards for codified language that represents groups of clinical terms.’
It is a contractual requirement for all National Health Service healthcare providers in England to use SNOMED CT UK for capturing clinical terms, including diagnoses, within electronic patient record systems.
Within SNOMED CT UK, all content for myalgic encephalomyelitis and chronic fatigue syndrome is contained within a single overarching code, with linked codes for mild, moderate, severe and now very severe forms. These can be used by all NHS healthcare providers, including general practitioners.
Widespread engagement and use could allow greater greater clarity in communicating patient disease identification, enhanced data collection and hence prevalence data, and now SONMED CT UK follows NICE guideline catagorisation. It must be remembered that use of SNOMED CT UK is not currently standard practice throughout the UK. NHS Scotland, for example, announced only in February 2024 a programme aiming to implement SNOMED CT as the standard clinical terminology used throughout the NHS Scotland digital realm – work is presently ongoing.
What is also to be regretted is that nothing seems to have come from moves to have the coding name updated and to no longer have Myalgic Encephalomyelitis, and ME/CFS classified under ‘Chronic fatigue syndrome (disorder)’ but to ‘ME/CFS ‘ME/CFS – myalgic encephalomyelitis/chronic fatigue syndrome’’ as the main classification instead. That would have truely aligned coding to the NICE guideline.
