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GP system updated to reflect M.E. as neurological

August 01, 2018

The latest update to the electronic health records system used by GPs in England was launched yesterday, listing M.E. as a neurological disorder. Previously it had sat under the headings Mental Disorder (which was removed in 2015) and Multisystem Disorder (which was retired in January).

The system, SMOMED CT, provides a standard mechanism for recording and collating data across populations which is important for public health monitoring, reporting and analysis as well as influencing decision making. The way it classifies illnesses influences how that illness may be perceived by doctors and other medical professions and others.

Until 2015, CFS (the term SNOMED uses for CFS and/or M.E.) had sat under two headings in SNOMED CT: Mental Disorder and Multisystem Disorder, the former being clearly unhelpful and inaccurate. Following advocacy efforts made by the Countess of Mar and Forward M.E., this heading was retired.

After discussion with Lady Mar, Action for M.E. agreed to take on the role of ‘Coordinator, Classification and Terminology Response Group’ on behalf of Forward M.E.

In January, SNOMED decided to retire the Multisystem Disorder heading too, leaving CFS (plus around 90 other concepts) without a heading.

With detailed technical advice from long-term SNOMED and ICD-11 advocate, Suzy Chapman, our Chief Executive Sonya Chowdhury contacted SNOMED CT in February to ask that:

  • a new parent term should be assigned given the conflict of classification between SNOMED and various versions of the ICD, the system used by the World Health Organisation (WHO)
  • based on the Institute of Medicine report (2015), CFS (and its related term, M.E.) should be assigned under the heading of Disorder of nervous system parent, until research provides an evidence base for a change.

We are pleased to confirm that this request has been granted, and are hugely grateful to Suzy Chapman, without whom this success would not have been achieved. A more detailed and technical description of how SNOMED classifies illnesses, and the changes made, has been published by Suzy.

As part of our international advocacy work, we also continue to engage with the WHO to discuss concerns relating to the classification of M.E. under concepts such as ‘Bodily Distress Disorder’ which is another inaccurate and potentially harmful concept.