@bobbler wrote:
Hadn't heard of this and only had a quick scan through so far. After thinking of other things from reading comments here in reverse-chronological I then 'wondered': is this just about the situation that neither the name of CFS (or anything fatigue bla) nor ME (because medics use/see the 'there is no evidence of brain inflammation' as a point of annoyance for them) is right?
It remains unclear to me whether Chesley is seeking to achieve a) or b), or something else:
a) to crowdsource a single medical term which would serve as an umbrella term under which a number of existing disease terms would be categorised. To promote the use of the umbrella term, internationally, to patient communities, clinicians etc instead of the terms Myalgic encephalomyelitis and Chronic fatigue syndrome in the context of research, care etc.
It's unclear whether Chesley would be seeking consensus and acceptance of the crowdsourced umbrella term amongst international researchers, international medical associations and adoption and implementation of the term by NCHS/CDC, WHO, SNOMED International etc. It's also unclear whether Chesley would be proposing an ICD code for this term, or whether she would be seeking to have it incorporated into ICD classification systems as an uncoded-for "parent class".
So, a) might be intended to be structured something like this:
New crowdsourced umbrella term (NCUT)
Post-acute Sequelae of COVID-19 (PASC)/Long Covid//Long Haulers
"Post-viral/post-trauma illnesses" (unclear what "post-trauma illness" means to Chesley)
Myalgic encephalomyelitis
Chronic fatigue syndrome
Chronic EBV
Fibromyalgia
"many more" (as yet unspecified by Chesley but may include chronic Lyme disease)
b) to crowdsource a single medical term which would serve as an umbrella term under which a number of existing terms would be categorised but which is also intended to absorb the existing terms: Myalgic encephalomyelitis and Chronic fatigue syndrome and serve as a replacement for these terms. Although the other terms she cites as "related" would keep their existing terminology.
This would require the obtaining of an ICD code for the umbrella term for reimbursement. It might also mean new codes for the "related" terms and chapter relocations. Or using a coding structure like:
XXX.1 New crowdsourced umbrella term due to Post-acute Sequelae of COVID-19 (PASC)
XXX.2 New crowdsourced umbrella term due to Chronic EBV.
while leaving the existing terms in their current chapter locations.
It would also create issues for ICD data collection and data disaggregation going forward, as new ME and CFS diagnoses would now be buried within the
NCUT umbrella term. (Compare how ICD-10-CM's CFS was historically buried within "R53.82 Chronic fatigue NOS".)
Additionally, the coding industry and insurers demand specificity and may not consider a coded-for umbrella term that also replaces ME and CFS sufficiently specific for reimbursement.
So b) might look something like this:
New crowdsourced umbrella term (NCUT) (to be coded for instead of ME and CFS; she does not mention SEID which also has an ICD code now.)
Post-acute Sequelae of COVID-19 (PASC)/Long Covid//Long Haulers
"Post-viral/post-trauma illnesses"
Chronic EBV
Fibromyalgia
"many more" (as yet unspecified by Chesley but may include chronic Lyme disease)
Or perhaps she is looking to replace all of the "related" terms with a single umbrella term. The WHO would not entertain that.
If I've misunderstood the intentions, then the fault lies with the failure to set out clearly on the One Name Campaign website amidst all the "rebranding" hype what the objectives of this project are.
I would add that ICD-11 is being released in five-yearly 'stable' versions. Although a new release is published annually, you cannot readily move an existing code under a new parent code (or to a new chapter) as this would constitute a major change, which is only permitted according to the Major Change schedule.
WHO, 2020:
"Proposed changes to the classification that would result in a code change are not permitted. Changing the primary parent of [an] entity would result in [the] entity needing to have the code changed, as entities are assigned based on their primary location."
Also, the WHO's International version of ICD-10 cannot be updated now as it reached the end of its update and revision life in 2019. Much of the world still uses ICD-10 and has not transitioned yet to ICD-11.
