Type

Add concept

Status

Closed - Complete

Hierarchy

Clinical finding

Parent identifier

52702003

Suggested name, term or description

Very severe chronic fatigue syndrome (disorder)

Priority

Urgent

Brief summary of the request

Addition of a SNOMED CT concept for very severe ME/CFS to enable accurate coding aligned with NICE NG206 severity definitions. 

Description of the addition or change

This request proposes the addition of a new SNOMED CT concept to represent very severe chronic fatigue syndrome (ME/CFS) as a distinct severity level under the existing ME/CFS disorder hierarchy.  
 
SNOMED CT currently includes concepts for mild, moderate, and severe ME/CFS as children terms. However, there is no concept representing very severe ME/CFS, despite this being a formally defined and clinically significant severity category. 
 
Very severe ME/CFS is explicitly defined in NICE guideline NG206 (2021) and is recognised in UK clinical practice. NICE describes people with very severe ME/CFS as being bedbound, dependent on care for activities of daily living, extremely sensitive to sensory stimuli, and in some cases unable to swallow, requiring enteral feeding. NICE also provides specific recommendations for the care of people with severe or very severe ME/CFS, reflecting their distinct clinical risks and care needs. 
 
At present, SNOMED CT does not include a specific concept to represent very severe ME/CFS. The absence of this concept limits accurate clinical documentation and creates risks for patient safety and care planning. It also prevents meaningful data capture for service planning, commissioning, audit, and research involving this highly vulnerable patient group. 
 
Severity stratification (mild, moderate, severe, very severe) is standard practice in UK specialist ME/CFS services and is used to guide clinical decision-making, care pathways, and support needs. Without a dedicated very severe SNOMED CT concept, this information cannot be reliably captured in routine clinical systems or reporting. 
 
Adding this concept would: 
- Enable accurate recording of very severe ME/CFS in patient records;
- Support appropriate clinical care, safeguarding, and home-based services;
- Improve data quality for epidemiology, commissioning, and research;
- Align SNOMED CT with NICE NG206.
 
The proposed concept should be added as a subtype of ME/CFS, consistent with existing mild, moderate, and severe ME/CFS concepts. 
 
Attachments as evidence: 
NICE NG206 (2021) — Box 1: Severity of ME/CFS (definition of very severe ME/CFS) (p. 7-9) 
NICE NG206 (2021) — Section on care for people with severe or very severe ME/CFS (p. 50-52) 
Baxter, H., Speight, N., & Weir, W. (2021). Life-Threatening Malnutrition in Very Severe ME/CFS. Healthcare, 9(4), Article 459. https://doi.org/10.3390/healthcare9040459 

Request update

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Source of authority

Provisional concept term

Very severe chronic fatigue syndrome (disorder)

SNOMED CT concept identifier

2897971000000106

SNOMED International request reference number