When MP John McDonald asked how standardised health record codes are created (UIN 12357) for use within the NHS and whether the Minister would ensure that a code is created for myalgic encephalomyelitis in the SNOMED CT (Systematized Nomenclature of Medicine Clinical Terms) UK classification system (UIN 12359) in primary care, the response from Karin Smyth MP, Minister of State in the Department of Heath and Social Care shed light on the classification issues surrounding the disease.
The Minister’s answer disclosed that Myalgic Encephalomyelitis, Myalgic Encephalopathy, and Chronic fatigue syndrome (amongst other names) are classified under ‘Chronic fatigue syndrome (disorder) SCTID: 52702003 ‘ but the preferred term of Chronic fatigue Syndrome is currently under review with ‘ME/CFS ‘ME/CFS – myalgic encephalomyelitis/chronic fatigue syndrome’’ being considered.
However, 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.
Nomenclature is important – especially in a disease which has and still does face challenges for recognition and validation within the medical profession. A re-naming is a very small but very overdue step considering NICE accepted ME/CFS as the disease name in their 2021 guideline; at the time a welcome update from CFS/ME but still not ideal.
What is more important is that healthcare professionals are accurate and consistent in their coding of ME/CFS. ME Research UK has already commented on the adverse impact on accurate prevalence rates caused by coding weaknesses and how one element on arriving at an accurate figure for the numbers affected by ME/CFS would be for representatives from the UK’s various NHS’s to ensure more precise and consistent coding of ME/CFS. The parliamentary answers help highlight the issue but also show that basic work needs to be done.
Parliamentary Questions and combined Answer in Full.
Q – To ask the Secretary of State for Health and Social Care, how codes are created for the SNOMED CT classification system in primary care.
Q – To ask the Secretary of State for Health and Social Care, if he will ensure that a code is created for myalgic encephalomyelitis in the SNOMED CT classification system in primary care.
A – Codes are created for SNOMED CT by one of the following organisations:
– UK National Release Centre (NRC), hosted by the Technology and Information Standards (TIS) group in NHS England;
– SNOMED International, a not-for-profit organisation that owns, administers and develops SNOMED CT; – any other NRC in any other SNOMED CT member country.All requests made to NHS England must be compliant with the Editorial Policy and are processed in accordance with the SNOMED CT UK Edition Governance and Change Request Process. Concepts are added or changed in SNOMED CT by NHS England terminologists in line with International and UK Editorial Principles as defined by SNOMED International at the recommendation of international clinical advisory groups. The authoring process includes a technical quality assurance and peer review. Once the authoring process has been completed and quality assured, the files are published on the Terminology Reference data Update Distribution website.
There is currently a code in SNOMED CT for myalgic encephalomyelitis. The Fully Specified Name (FSN) is ‘Chronic fatigue syndrome (disorder)’. The FSN for a code is not intended for use by a clinician. Instead, a clinician is expected to make use of the synonyms for the code, which include myalgic encephalomyelitis.
Clinical systems usually display a ‘preferred term’, deemed to be the most clinically appropriate way of expressing a concept. The preferred term for the code ‘Chronic fatigue syndrome (disorder)’ is ‘Chronic fatigue syndrome’.
NHS England is reviewing the preferred term to align it with the current most clinically appropriate term for the UK, with the preferred term ‘ME/CFS – myalgic encephalomyelitis/ chronic fatigue syndrome’ being considered.
