People with chronic fatigue of unknown cause that do not have ME have no particular reason to be put in a syndrome.
I think medical categories should be based on what makes sense rather than what has been fashionable with physicians for a while.
In the US's ICD-10-CM,
"People with chronic fatigue of unknown cause" can be diagnosed with
R53.82 Chronic fatigue, unspecified.
One of the problems with the US's ICD-10-CM is that "Chronic fatigue syndrome" is currently an
inclusion under
R53.82 Chronic fatigue, unspecified, so it takes the same code.
SNOMED CT International Edition and the UK Edition have "Chronic fatigue syndrome" as the lead Concept term, with BME and ME under the CFS Synonyms list. But all terms under this Concept code are cross-mapped to ICD-10's G93.3. (It is SNOMED CT that is mandatory for use in primary care in NHS England.)
In the US extension of SNOMED CT, CFS is cross-mapped to a choice of ICD-10-CM codes, to G93.3 or to R53.82, reflecting the variation in the coding of these terms for the US's ICD-10 clinical modification compared with how the terms are coded by the WHO.
In March 2017, a joint proposal submitted by me and Mary Dimmock called for separate codes for ME and CFS, and to also separate ME from PVFS. The WHO would not accept this change to the coding structure. For ICD-11, both ME and CFS are specified as inclusions under 8E49 Postviral fatigue syndrome. (Note that ICD inclusion terms may or may not be synonyms to the ICD title to which they are coded.)
As I've said in previous posts, retiring an existing term entirely from ICD presents problems for legacy data and for comparability with data reported using various editions of ICD.
Some low resource countries, and also Italy, are still using the WHO's
ICD-9 edition for reporting of data.
From January 01, 2022, the WHO will start collecting data from member states that has been recorded using the new ICD-11 codes, the International edition of ICD-10 (which may be Version: 2019, Version: 2016 or earlier releases, and in some countries, ICD-9) and also from the various clinical modifications including, ICD-10-CM (US), ICD-10-CA (Canada), ICD-10-GM (Germany), ICD-10-AM (Australia). All these editions have variances in their content and codes but the data they generate has to be collated for comparison.
So terms that are being retired or deprecated need to be retained somewhere in the classification in order that legacy data can be carried forward for analysis or they need to be mapped (or cross-walked) to an existing code or to a newly created code, otherwise legacy data is lost.
Neither the orgs' proposal or the alternative proposal presented by NCHS has set out how the existing
"Chronic fatigue syndrome NOS" term would be mapped in future, if the term were to be deleted from ICD-10-CM or whether patients with an existing diagnosis of R53.82 would be assigned a new code by their providers.
Nor was the potential for unintended consequences discussed at the meeting and how that might be mitigated. I believe that if CDC's Donna Pickett had been presenting, these issues would have been acknowledged and clarified at the meeting; but the presentation was overseen, on this occasion, by NCHS's Traci Ramirez who has not been involved in previous submissions (in 2011, 2012, and 2018).
These issues, the inconsistencies I have identified in the NCHS proposal and the lack of adherence to ICD conventions need public discussion at a future meeting before any decision is made by the NCHS Director.
At the moment, neither proposal is fit for purpose, irrespective of the terms, per se, and the changes being proposed to the terms, and no decisions should be made on either proposal, as they currently stand.
[Edited for clarity]
