SNOMED now classifies ME and CFS as neurological
NHS Wales uses the SNOMED CT electronic terminology system for recording and sharing symptoms, diagnoses, clinical findings, procedures etc. in primary and secondary care and across other health care settings. This replaced the READ (CTV3) coding system.
The International update of SNOMED CT was released on 31 July 2018 with a new code for CFS and and its Synonym terms – SCTID: 52702003 – under Disorder of nervous system. (The code for FM is 203082005 and the PVFS code remains SCTID 51771007).
The coding system is used in over 30 countries. SNOMED CT is the recommended terminology system in the UK, US, Canada, New Zealand and Australia and is in line with the WHO ICD-10 codes to make it easier to use them both together.
Thanks are due to The Countess of Mar, chair of the Forward ME Group and Suzy Chapman of DxRevisionWatch.com who have been campaigning for ME and CFS to be acknowledged as neurological.
The UK SNOMED update is due to be released in October 2018 and this is scheduled for adoption across all UK NHS clinical settings by 2020. NHS Wales acknowledges that it will take time to be in full use in Wales. In October 2017 the Welsh Government published a Statement of Intent regarding health and care data:
We are increasingly focusing standardisation effort on the quality of data captured in operational systems which has the advantage of driving up the quality of data for direct care, and for purposes beyond direct care. We now have clinical information standards, such as SNOMED CT, which are key components of electronic patient records. Such data standards will facilitate the monitoring of individual and patient population outcomes over time, and enable us to capture accurate data to use in combination with genomic data to underpin precision medicine.
However, there is little knowledge of SNOMED CT in NHS Wales and a programme
of awareness and education is required to enable this tool to be incorporated safely
and effectively into local and national information management and technology
developments.
Thank you for reporting on this recent change of parent for CFS and its Synonym terms in SNOMED CT.
I’d like to clarify the following:
This change of parent was implemented for the SNOMED CT International Edition July 31, 2018 release. The change will be incorporated into the next release of the UK Edition on October 01, 2018 – not in 2020, as you have stated in the report.
The UK Edition has a public browser which is maintained by NHS Direct but it can also be accessed via the browser platform for the International Edition. So we shall see this change in early October, this year.
Since April 2018, SNOMED CT UK Edition has been the mandatory terminology system for use in NHS primary care, replacing the Read Code (CTV3) terminology which is now retired. SNOMED CT UK Edition is scheduled for adoption across all NHS clinical settings by 2020, as you have noted in the report.
The SNOMED CT code for Chronic fatigue syndrome and its Synonym terms is SCTID: 52702003 not 51771007. The U.S. site you have taken this code from has not been updated for several years.
This is the current listing for Chronic fatigue syndrome and its Synonym terms on the SNOMED CT browser:
http://browser.ihtsdotools.org/?perspective=full&conceptId1=52702003&edition=en-edition&release=v20180731&server=http://browser.ihtsdotools.org/api/v1/snomed&langRefset=900000000000509007
In July 2015, the Concept term Postviral fatigue syndrome (but not ME) was separated from CFS and its Synonym terms and relocated under a new parent: Post-viral disorder, under parent: Post-infectious disorder. PVFS retained the 51771007 code.
So the PVFS code remains SCTID 51771007.
But CFS and its Synonym terms (which include ME) are coded at SCTID: 52702003
Synonyms
Iceland disease
Benign myalgic encephalomyelitis
Chronic fatigue syndrome
Myalgic encephalomyelitis syndrome
ME – Myalgic encephalomyelitis
Myalgic encephalomyelitis
CFS – Chronic fatigue syndrome
Chronic fatigue syndrome (disorder)