Renaming the disease: who calls the shots?

This thread segued into the perennial discussion of naming this illness. I’m interested in what would be the necessary conditions for a name change to gain acceptance, whether the preferred option was SEID, Ramsey’s, a Shepherdesque acronym-preserving tweak, or in some future utopia a label derived from an uncontested biophysical aetiology.

Would the hegemonic might of the US CDC be enough? Would a special conference be needed, and if so who might be convened? Does the WHO (famously resistant to toponyms and eponyms) have any part to play (I think they are only interested in transmittable disease, but am not sure)?

I’m assuming that the ludicrously fragmented patient advocacy community wouldn’t be represented, but maybe there’s a scenario where it could be.

 

That is a reasonable answer to the question “is it worthwhile spending limited advocacy resources on concerted efforts to choose and promulgate a better name?”. I think I agree.

It isn’t an answer to the question posed, which was “which parties and organisations would need to be involved, under what circumstances, for an effective change in nomenclature?”. Maybe advocacy was the wrong forum.

 

The only way to rename ME would be to hold a huge series of meeting and get buy-in from all major groups: Patient groups, specialists, and health agencies. A critical mass of people would have to commit to a new name and use it until it stuck.

 

That sounds about right. But how international would the health agencies need to be? One from every UN member state? Or just the CDC?

 

Could we conclude that in the UK at least NICE has already made a decision to go with (fudged, inclusive, copout, balanced, compromise, weak choice depending on your view point) ME/CFS and this is being de facto supported by groups like the British ME Association or individuals like our members who pull up NHS services or newspapers for using anything else? So it is possible all that is now required here is time (and concerted effort).

Interestingly in America there was a decision to go with the more logical SEID by one national government body, but this quietly flopped.

I don’t think we are in a position to decide formally a new name for the whole world no matter how many groups get involved, but if a few groups like NICE individually adopt a name that by chance sticks then the wider adoption of that name will happen organically.

Personally I am not to bothered about a name as long as it is actually understood more widely. I will accept ME/CFS as a temporary compromise, though I prefer ME or Ramsey’s [should be Ramsay’s] Disease. However I do object to CFS on the grounds that it promotes misunderstanding, that the general public think they know what the disease involves on the basis of the words ‘chronic fatigue’ when in fact they have been misdirected.

 

A full answer would require a treatise. I'll attempt something brief:

There's a practical difference between 'naming' -and 'categorisation' although in medicine the two are constituents of Nosology . There is no absolute world court on the naming of diseases, much of it is convention and conventions vary between countries, regions and cultures. Clearly some countries have a bigger global influence than others but those influences can not be relied upon in terms of 'spreading the word' given regional and/or cultural antipathies.

Categorisation is more formalised and has an increasing global consensus - but mostly operates at glacial speeds - see: Updates on status of ICD-11 and changes to other classification and terminology systems and the heroic work of @Dx Revision Watch. In addition to the ICD of which various nations have their own modifications e.g: ICD-10-CM , there are other classification systems most notable being SNOWMED: What is the difference between ICD-10 and SNOMED?

So the process of name change would likely firstly require broad professional acceptance of the new nomenclature in a number of influential countries/regions, and would need to include formal Nosological input which may require new clinical findings on which to base a new name. With the foregoing achieved it may be possible to move forward on changes to the classification systems relative to their separate administrative processes. This wouldn't be as arduous as achieving category change but might, in the case of the ICD variations take a decade or more to achieve full recognition.

Which I think takes us to the point of -" is it really worth the effort ?". I would also add that by raising the issue it offers an opportunity to those who have other agendas, and quite possibly far more resources than are available to patients. At present ME/CFS is 'defendable' - it's not perfect by any means but it is workable with and that is a good place to be.

 

Thanks. I always enjoy your ad-hoc but comprehensive and detailed accounts of the moving parts in whatever issue is at hand; this one is exemplary.

 

a) It is Melvin Ramsay not "Ramsey".

b) The WHO is removing the apostrophe "s" from eponyms [1], for example:

Down syndrome - not Down's syndrome
Parkinson disease - not Parkinson's disease.

1 https://www.emra.org/emresident/article/eponyms/


c) The WHO actively discourages the use of eponymous terms in new medical terminology:

The following text is an extract from post #71 in a 2020 thread:

ME/SEID - a more accurate illness name than ME/CFS? (words only, nothing to do with diagnostic criteria)

https://www.s4me.info/threads/me-se...-diagnostic-criteria.13858/page-4#post-240827


The WHO's policy is not to permit new eponymous names to be used as Concept Title terms (these are the terms to which the code is assigned, under which may sit a number of Synonyms terms and Index terms, which may or may not be coded to the Concept Title code and which may or may not be listed in the ICD-11 equivalent of the Tabular List).

In ICD-11, where there is alternative medical terminology, the medical term is the designated Concept Title and any existing eponymous terms are listed under Synonyms.


WHO ICD-11 Reference Guide on eponyms and use of acronyms:




There are a number of problems with eponyms - here are a few of them:

1 Translations - ICD is translated into dozens of languages, sometimes using non human translators.
2 Lack of knowledge in other countries of the significance of a proposed eponymous term. What would the name "Ramsay", for example, mean to a clinician or patient in Mongolia?
3 Disputes over who first discovered a disease, disorder or finding.
4 Is the proposed eponymous term inclusive of all patients diagnosed with the disease or do some, for example, have non "Ramsay" described onset?
5 An historical eponym may lack specificity and may have been applied to more than one disease or condition.
6 Classification and terminology systems are electronic systems and rely heavily on search engine databases. For ICD-11, the Alphabetical Index is replaced with a searchable electronic Coding Tool. The ICD-10 Alphabetical Index and for ICD-11, the electronic Coding Tool, are the first point of access for coders.


As it happens, I can use "Ramsay Hunt Syndrome" as a good example:

The name "Ramsay Hunt" (and sometimes "Ramsay-Hunt") is historically associated with two disorders:

8B88.Y Other specified disorders of facial nerve

Ramsay-Hunt syndrome
Ramsay-Hunt disease or syndrome

and

8A07.Y Other specified movement disorder

Ramsay Hunt cerebellar syndrome


But the Ramsay Hunt and Ramsay-Hunt terms are listed under Synonyms or listed only in the Foundation Component, as opposed to being included in the ICD-11 Mortality and Morbidity Statistics Linearization (the equivalent of the ICD Tabular List, where the coded-for terms are).

The ICD-11 Preferred term for one of these disorders is:

https://icd.who.int/dev11/f/en#/http://id.who.int/icd/entity/305361524

Geniculate ganglionitis

with

• Ramsay-Hunt syndrome
• Ramsay-Hunt disease or syndrome
• Hunt neuralgia

under Synonyms terms.



SNOMED CT terminology system:

In SNOMED CT terminology system, a search on "Ramsay" will return the following choices. SNOMED CT uses "Ramsay Hunt Syndrome 1" and "Ramsay Hunt Syndrome 2" in the search engine database, to differentiate between two disorders that are historically associated with the same term, "Ramsay Hunt Syndrome".

There is also a:

Ramsay sedation scale which will be offered by the search engine when "Ramsay" is entered.


A Concept term in SNOMED CT is the "Fully Specified Name (FSN)".


In SNOMED CT we have:

Ramsay Hunt Syndrome 1 (Concept term and Preferred term: 41009006 Progressive cerebellar tremor (disorder)

Ramsay Hunt Syndrome 2 (Concept term and Preferred term: 21954000 Herpes zoster auricularis (disorder)

Ramsay Hunt Syndrome - ataxia (Concept term and Preferred term: 192871008 Early onset cerebellar ataxia with myoclonus (disorder)

Ramsay Hunt Syndrome - auricula (Concept term and Preferred term: 21954000 Herpes zoster auricularis (disorder)

So again, this terminology system's preferred term is a medical term - not a term containing the name "Ramsay Hunt".


To take "Lou Gehrig disease" as an example of a disease that attracted a lot of public attention:

(In some countries the term motor neuron disease is used synonymously with amyotrophic lateral sclerosis.)


In ICD-11 it is listed as:

8B60 Motor neuron disease

Lou Gehrig disease is listed under Synonyms terms along with a number of alternative terms.



For SNOMED CT, the Concept term and Preferred term is:

86044005 Amyotrophic lateral sclerosis

again, with Lou Gehrig's disease under the Synonyms list:

en Amyotrophic lateral sclerosis
en Amyotrophic lateral sclerosis (disorder)
en Bulbar motor neuron disease
en ALS - Amyotrophic lateral sclerosis
en Lou Gehrig's disease


As noted above, for ICD-11, where an eponymous name is listed under Synonyms, it should drop the apostrophe "s". So ICD-11 lists "Lou Gehrig disease" under Synonyms terms - not "Lou Gehrig's disease".

[Minor edits for clarity.]

 

Its difficult to express how much i despise the name CFS, but i think for now the answer to that question is that there are none. I dont belive there are currently any conditions which could result in acceptance of a name change. There is just too much division of opinion, i dont hink its possible.

But when we eventually (i live in hope) do have a proper understanding (with irrefutable evidence to back it up) of the aetiology, a name change will just happen natually. I dont think we will need to fihgt for it much & it wont require the same unity because (for example) if its proven to be for example a signalling error that has nothing to do with encephalomyelitis or immune dysfunction, then ME/CFIDS those names will become absurd, rather than opinion based choices.

 

Thanks for reposting. The WHO’s position may well be a practical blocker to a novel eponym.

However I loved @Snow Leopard ’s point by point rebuttal in the original thread: the WHO is not our dad.

 

The WHO is not our dad but if you want your disease coded in classification and terminology systems for medical records, data reporting and reimbursement, then WHO policies cannot be disregarded.

 

Snow Leopard wrote in the 2020 thread:

Note that the patient led term "Long Covid" isn't being used by ICD-11. ICD-11 uses:

RA02 Post COVID-19 condition

as Concept Title with the following terms as index terms:

• Post COVID-19 condition
• postCOVID condition
• post-COVID-19 condition
• long COVID

 

A subtle problem with ME is that it clashes with a common word, making it difficult to search for online and sometimes creating ambiguity. Recently I came across this article, with a photo of a woman holding a sign that reads, "DECLARE AN EMERGENCY FOR LONG COVID AND ME".

A Google search for living with me returns results entirely related to ME, but for a DuckDuckGo search for that phrase, about half the results are relevant.

Googles results for i have me are almost all relevant, but only one result on the bottom of the first page of DuckDuckGo is.

 

It may be as well to shift away from eponymous disease names but I don't see much logic in dropping apostrophes. Part of the argument seems to be that in other languages it may not make sense. However, the apostrophe has the great advantage of indicating that the word before is someone's name - which is likely to be easily enough understood by medical professionals using other languages.

Down syndrome might be thought to have something to do with down - being short perhaps.
The potential confusion is already well documented. There is something known as Pfannenstiel's incision - for abdominal surgery. It can also be called a Pfannenstiel-Kerr incision, which is equally clearly eponymous because of the hyphenation of two otherwise unrelated words. (Ramsay-Hunt syndrome probably lacks the apostrophe by dint of a misapplied rule here.) But Pfannenstiel incision also became a common usage. The problem with this is that the incision is a smooth curve, like the handle of a pan, bucket or pot - which in German is pfannenstiel (apparently). There was even talk of a bucket-handle incision. If the apostrophe had been stuck to the confusion would not have arisen and surgeons would not have begun to think they were supposed to make a cut like a pan-handle.

 

I am pretty sure it is the same haphazard process that gave us 'biro' in the UK, 'bic' in USA, 'hoover' (all with small letters), croque monsieur, SARS, Long Covid, socialism, dental floss, orthopaedics, mansplaining, osteoarthritis and so many other words.

I like ME/CFS because it says ' this is a particular form of illness that after endless argument people have agreed is worth identifying as distinct, that has a huge number of stupid names and since the stupidity of the names and the failure to sort the problem out is almost entirely the fault of the medical profession the sensible thing to do is to combine two names, to prove the point that we are trying to agree on something that can suit everyone, but with the name the patients prefer first, to remind the professionals that they need to do better.

 

That’s trivially reductive. Anyway, SARS was presumably named by a committee of health bureaucrats in 2003, so has much more in common with whatever formal process might result in renaming ME than either do to the French for cheese toasties.

 

This is an absolute requirement in my view. Without reliable biomarkers, and at least a few key insights as to cause related to the biomarkers, its going to be so very hard to convince enough scientists, medical professionals and company and government bureaucrats. Some meeting may be held, we can trumpet the success, but it will still fall on flat ears. We need definitive evidence. There are groups that clearly fulfil one diagnostic criteria or another but the overlap is huge, and this gives so many interest group room to disagree. Biomarkers will at least allow us to carve out subgroups with clear need for a new name.

Now the caveat to this is that if we have something strong enough to convince most scientists and medical researchers, such as a series of biomarkers, and most new research uses these as a starting point, then slowly we can chip away at the other special interest groups, including any big insurer that relies on psychogenic explanations to dispute claims.

Last time I heard anything on this it was repeat CPET that was allowing many patients to win their court cases against insurance and medical companies. Yet the non disclosure clauses with settlements probably partially explain why we see so little on this. It was not the name that mattered, it was the evidence.

To me the name is a huge problem, a socio-econo-political problem, destroying people's lives far too often, yet its the quality of diagnostic methods leading to improved research that is more important for long term benefit.

Reproducible, reliable biomarkers will change everything, and at that point name changes may become inevitable. These markers will also see much better legal and insurance outcomes for patients, convince many doctors, and lead to more focused research on treatment and cure. Worst case scenario at that point might be something like a diagnostic shakeup leaving us with CFS type 1, CFS type 2 etc.

Give me biomarkers, give me mechanisms, and especially give me treatments, and I will see how we will win the name battles.