The ME Association’s Healthcare 4 ME (H4ME) team are pleased to share an important step forward for people with very severe ME/CFS in the UK.
Following an application submitted in January 2026, we can confirm that a new SNOMED CT (Systematized Nomenclature of Medicine Clinical Terms) concept has now been approved and published:
Very severe [ME] chronic fatigue syndrome (disorder)
Very severe chronic fatigue syndrome
Very severe ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome)
Very severe myalgic encephalopathy
Concept ID: 2897971000000106
This concept is now available in the NHS UK Edition of SNOMED CT and can be viewed via the NHS Digital SNOMED CT Browser.
Why this matters
SNOMED CT is an internationally validated system to record clinical information in the patient record and aids in enhancing communication of clinical data across healthcare systems [1]. It was rolled out across GP systems in England from April 2018, replacing Read Codes as the standard for clinical coding [2].
Until now, SNOMED CT included concepts for ‘mild’, ‘moderate’, and ‘severe’ ME/CFS, but had no equivalent for ‘very severe’ ME/CFS. This left a significant gap, because very severe ME/CFS is a clinically distinct category with its own specific care needs and risks.
NICE guideline NG206 (2021) describes people with very severe ME/CFS as being bedbound and entirely dependent on care for all activities of daily living, often with extreme sensitivity to sensory stimuli, and in some cases unable to swallow, requiring enteral feeding. NICE provides dedicated recommendations for the care of people in this category, recognising the profound clinical complexity involved.
What the new code changes
The addition of this concept, alongside the existing mild, moderate, and severe categories, means:
- Information may be communicated more effectively
Where implemented; this may support clearer communication of severity across care teams [3]. - Data capture may improve over time
A distinct concept creates the potential for this group to be identified more clearly in datasets used for audit, research, and service planning [3]. - Closer alignment with NICE guidance
The terminology now reflects the severity category described in NICE NG206 [4].
What happens next
The publication of a SNOMED CT concept is an important step, but it does not guarantee immediate use in clinical practice.
The new code has been shared with representatives at the Department of Health and Social Care (DHSC). The healthcare team will now begin engagement work to support the adoption of this code by clinicians, and to ensure it is available for use in GP clinical systems. This process can take time and may vary across systems.
A note of thanks
We would like to thank the Getting It Right First Time (GIRFT) programme at NHS England for their support and for sharing their expertise in clinical coding with the healthcare team.
References
- NHS England (2023): Clinical coding – SNOMED CT
- NHS England: SNOMED CT explained
- Blundell, J. (2023) Health Information and the importance of clinical coding. Anaesthesia & Intensive Care Medicine, 24(2), pp. 96–98.
- NICE Guideline (2021) Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management (NG206)
Further Information
- The ME Association: SNOMED CT Coding: Optimising ME/CFS and Long COVID Care | June 5, 2025
- NHS Networks: Very Severe ME/CFS SNOMED CT Code approved
Contact the Healthcare 4 ME care team
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