Updates on status of ICD-11 and changes to other classification and terminology systems

A "very severe CFS" concept has been added to the UK version of SNOMED (used in primary care settings):

NHS - SNOMED CT Browser
Very severe chronic fatigue syndrome (disorder)
SCTID: 2897971000000106
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2897971000000106 | Very severe chronic fatigue syndrome (disorder) |
Very severe chronic fatigue syndrome (disorder)
Very severe chronic fatigue syndrome
Very severe ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)
Very severe myalgic encephalopathy
Click to expand...
This was apparently at the request of MEA:

Link
 
Arnie Pye said:
What is the significance of the word "disorder" at the end of the name?
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It's called a "semantic tag" in SNOMED. In the documentation they give the example of "Hematoma (disorder)" vs "Hematoma (morphologic abnormality)"; the former refers to a clinical diagnosis; the latter refers to a pathologist's finding. Here's how they describe it:
A FSN is composed of a term and a “semantic tag” between parenthesis at its end (e.g. |Myocardial biopsy (procedure)|). The tag indicates the hierarchy to which the concept belongs (e.g. procedure, disorder, organism, etc.). Each concept has a FSN, which is unique in SNOMED CT in a given language, even in cases of FSNs with identical terms that refer to concepts belonging to different categories.
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https://docs.snomed.org/snomed-ct-p...ion-guide/3-snomed-ct-as-a-health-terminology
 
Nightsong said:
A "very severe CFS" concept has been added to the UK version of SNOMED (used in primary care settings):
Click to expand...

SNOMED CT is also used in:
  • Secondary & Acute Care: Deployed in hospital Electronic Patient Record (EPR) systems to track diagnoses, procedures, and care histories.
  • Mental Health & Community Services: Records care activities and patient progress.
  • Dentistry & Optometry: Captures clinical findings and treatment records.
  • Pathology & Diagnostics: Replaces older systems (like LOINC) to code and communicate lab tests and results.
 
Nightsong said:
It's called a "semantic tag" in SNOMED. In the documentation they give the example of "Hematoma (disorder)" vs "Hematoma (morphologic abnormality)"; the former refers to a clinical diagnosis; the latter refers to a pathologist's finding. Here's how they describe it:
Click to expand...

The "core clinical" semantic tags indicating the relevant domain within SNOMED CT are:
  • (disorder): Used for diseases, illnesses, and abnormal conditions.
  • (finding): Used for clinical observations, symptoms, and results.
  • (procedure): Used for surgical, therapeutic, and diagnostic interventions.
  • (body structure): Used for anatomical parts, organs, and organ systems.
  • (organism): Used for living organisms, bacteria, and viruses.
  • (substance): Used for chemical substances and bodily fluids.
  • (product): Used for medicinal and biologic products.

But there are many others as SNOMED CT terminology system contains a far wider codable terminology than the scope of ICD-10 and ICD-11.
 
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Note that the severity codes under SNOMED CT 52702003 | Chronic fatigue syndrome (disorder) | are specific to the UK SNOMED CT extension. These severity codes are not included within the International Edition or other country specific editions.

You can read the request submitted by the MEA (which was uploaded to the UK extension Request Submission Portal on 20 January 2026) here:


Request 58546​

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

Source of authority

Provisional concept term
Very severe chronic fatigue syndrome (disorder)
SNOMED CT concept identifier
2897971000000106
SNOMED International request reference number
 
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Note also that new Concept SCTID: 2897971000000106 Very severe chronic fatigue syndrome (disorder)
lists all the following terms under Synonyms:

NHSDigital SNOMED CT Browser

>NHSDigital SNOMED CT Browser
termbrowser.nhs.uk termbrowser.nhs.uk

Very severe chronic fatigue syndrome (disorder)​

SCTID: 2897971000000106​

Very severe chronic fatigue syndrome (disorder)
Very severe chronic fatigue syndrome
Very severe ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)
Very severe myalgic encephalopathy


whereas, the existing Mild; Moderate; Severe severity concept codes list only:

Mild chronic fatigue syndrome (disorder)
Mild chronic fatigue syndrome

Moderate chronic fatigue syndrome (disorder)
Moderate chronic fatigue syndrome

Severe chronic fatigue syndrome (disorder)
Severe chronic fatigue syndrome


So that needs attention for consistency with the recently added concept code for "Very severe....".
 
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