MARKING SIGNIFICANT STEP FORWARD IN RECOGNITION AND CARE
The ME Association, the leading charity supporting people affected by ME/CFS (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome) and Long Covid, has confirmed that a new SNOMED CT clinical concept for ‘very severe ME/CFS’ has been officially approved and published.
This development represents an important advancement in the clinical recognition of ME/CFS. Until now, SNOMED CT, a leading international standard for healthcare terminology, only included categories for mild, moderate, and severe ME/CFS. The absence of a classification for very severe ME/CFS has meant that a distinct and highly vulnerable patient group has not been fully captured within clinical coding systems.
Very severe ME/CFS is recognised as a clinically distinct category with its own specific care requirements 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.
The introduction of this SNOMED CT concept, alongside the existing mild, moderate, and severe categories brings several key benefits:
• Information may be communicated more effectively
Where implemented; this may support clearer communication of severity across care teams.
• 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.
• Closer alignment with NICE guidance
The terminology now reflects the severity category described in NICE NG206.
“The introduction of a ‘very severe ME/CFS’ SNOMED CT code is a vital step in recognising the reality faced by the most severely affected people in our community. Accurate classification is not just about terminology, it underpins better understanding, better data, and ultimately better care. For too long, people with very severe ME/CFS have been invisible within healthcare systems. This change helps ensure their needs are properly acknowledged and considered. Furthermore, while the addition of the code is a significant milestone, effective implementation across healthcare systems will be essential to realise its full benefit for patients,” explains Dr Charles Shepherd, Honorary Medical Adviser at The ME Association.
This concept is now available in the NHS UK Edition of SNOMED CT and can be viewed via the NHS Digital SNOMED CT Browser HERE