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

I think Trish summed up the situation well:

And neither do we know enough at this point to be knocking around suggestions for alternative names.

And it is actually of some relevance to the thread topic [ME/SEID - a more accurate illness name than ME/CFS? (words only, nothing to do with diagnostic criteria)] that classification and terminology systems cannot use combined terms or abbreviations.

 

So having put in my six penn'orth, I'll ignore the thread.

 

At the very least "Chronic fatigue" is a misnomer as well, since the symptom is fatigability.

SEID is clumsy as well.

None of the symptom based names correctly capture the symptoms or experience, we'd be best taking a name that does not assume pathology, yet we keep getting told that the WHO who are completely out of touch with our experience frowns on the idea of an Eponymous name. I disagree with most of the arguments that the WHO puts forth against eponymous names. The best argument is that the name is culturally biased (since who is to say who first described the disease), yet the other names CFS and SEID are also very culturally biased and have very misleading translations into other languages.

 

One is reminded of the old joke about the man (his nationality is doubtless irrelevant), who when asked for directions to a certain place answered, "well, if I wanted to get there, I wouldn't start from here".

 

Yup, and i would support an eponymous name. There are a ton of them.

https://en.wikipedia.org/wiki/List_of_eponymously_named_diseases

They even have an Edwards Syndrome.

Thinking out loud...I'm not sure how critical the billing codes are for a disease that has no treatment. If we had diabetes or COPD, which require consistent taking of meds, then I assume the physician would input codes to get the medicines prescribed and covered by insurance (as well as the office visit). If I need Ambien for sleep, and didn't have access to a CFS specialist, I would go to a normal doctor, not declare MECFS and just tell them I was having trouble falling asleep due to various family stress issues.

 

Suggest Ramsay's Disease

ETA: MEpedia page about Dr. Melvin Ramsay:

"Doctor A. Melvin Ramsay was consultant physician in Infectious Diseases at the Royal Free Hospital in London, United Kingdom, where an outbreak of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) occurred in 1955. He is considered the foremost expert on the outbreak and later examined similar outbreaks occurring in other cities and countries. In 1985, Dr. Ramsay published a case definition of the illness called the Ramsay definition.[1] Throughout his life, he was committed to public and professional education about the illness and to dispelling misconceptions that the illness was of psychological origin."

https://me-pedia.org/wiki/Melvin_Ramsay

ETA#2: added word "Suggest"

 

The only downside of that is that illnesses named after individuals are out of fashion. I wouldn't mind it, though.

For me, ME is probably the closest we've got now. I think SEID can be a bit narrow as a name.

 

They're not allowed to do that anymore. It's a shame because, even if it was allowed as an interim measure, it would allow naming that isn't potentially inaccurate due to lack of understanding of aetiology, or lack of diagnostic criteria. It's neutral. I'd be happy enough with that - I didn't experience any issues about nomenclature living with a diagnosis of Hashimoto's.

SEID is a bit unfortunate - DIES written backwards and all that.....

 

Yeah, and it has unfortunate connotations for some in the community (i.e., 'yet another name').

 

If we were to reuse one of our previous names then....

Ramsey - not everyone who now has a diagnosis of ME/CFS would be included. As far as I know I would, but you wouldn't want to leave people behind.

Place names - Royal Free, Akureyri, Incline (possibly not as could be misread as Inclination - i.e. we're lazy buggers not inclined to do stuff!!)?

 

I've set this out several times before but I am going to set it out just once more:


The WHO's editorial 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 eponymous terms are listed under Synonyms.


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




Example of convention for acronyms under Synonyms or Index terms:

• PVFS - [postviral fatigue syndrome]
• ME - [myalgic encephalomyelitis]
  
• CFS - [chronic fatigue syndrome]

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 an electronic Coding Tool. The Index and for ICD-11, the electronic Coding Tool, are the first point of access for coders.


ICD-11 Coding Tool:

https://icd.who.int/devct11/icd11_mms/en/current


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 historically associated with the term, "Ramsay Hunt Syndrome".

There is also a:

Ramsay sedation scale (Concept term and Preferred term is: 281400004 Ramsay sedation scale)


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)

--------------------------------------------------------------------

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

-------------------------------------------

Note that for ICD-11, where an eponymous name is listed under Synonyms, it should drop any genitive "s".

So ICD-11 lists "Lou Gehrig disease" under Synonyms terms - not "Lou Gehrig's disease".

 

Please see my post #73 re use of eponyms.

Codes are still recorded for reason for visit to clinicians - even if no treatment is prescribed at the point of contact.

With classification and terminology systems working in the background to patient electronic medical records (EMRs) and with the increasing sharing of patient electronic medical records across primary care and secondary specialities, it will be become more difficult to "hide" pre-existing diagnoses - including on abbreviated patient summary records.


SNOMED CT can be embedded into the patient electronic medical record system that the practice or hospital uses. The clinician types in Chronic fatigue syndrome or whatever and SNOMED CT applies the (Preferred Concept) code, which can then auto generate a map code to ICD-10, if an ICD-10 code is required for billing or data collection. There are already maps for SNOMED CT Concept codes to ICD-11 codes.

[Edited to add additional information about terminology systems.]

 

No! The WHO is not our Dad! See:https://tvtropes.org/pmwiki/pmwiki.php/Main/YoureNotMyFather

Regardless of what the WHO says, we can still demand such a name - billing codes do not have to be restricted to what the WHO state - this is not some universal law.

Secondly, strong support behind the choices of patients, not medical bureaucrats will show them that their policy is out of touch with patient needs, in exceptional circumstances.

So what? Symptom based names have similar problems:


1. Translations are a major problem for symptom based names. CFS has ridiculous translations in other languages for example.
2. Lack of knowledge in other countries
3. Disputes over meaning and relevance of symptoms in name
4. Is the symptom based name inclusive? Does it have sufficient specificity CFS vs CF etc. How long is a piece of string?
5. Symptom based names can be misleading
6. Symptom based names can cause stigma

To reiterate: just because the WHO has a policy does not mean that we should not point out that their policy causes problems for us!

 

I give up.

Call it what you damn well please.

 

Oh, and good luck with "demanding" anything from the WHO.

 

This is what was being proposed by WHO for ICD-11 in early 2013:

Concept Title: Chronic fatigue syndrome

Inclusion term: Benign myalgic encephalomyelitis

Index term: Postviral fatigue syndrome (among a list of alternative and historical terms)






What we eventually got:






And Exclusions for all three 8E49 terms under Bodily distress disorder.


I wish you all the best for any formal submissions (which will require supporting rationales and supporting evidence since there is no mechanism for processing "demands") for the addition of a new eponymous term as Concept Title or coded-for Inclusion or coded-for Synonym term for ICD-11.

Note also, that a "Change of Preferred Term (title)" comes under the class of "Major change" and can only be considered on the 5 yearly update schedule.

 

Oh, and if you are in Australia, you'll need to get the ICD-10-AM changed - since that is the "clinical modification" your country uses.

And then you'll need to get the Australian Edition of SNOMED CT changed, too:

https://browser.ihtsdotools.org/?pe.../SNOMEDCT-AU/2019-07-31&release=&languages=en

 

I never found this a very convincing reason. Who cares how words/acronyms are spelled backwards. And it’s not even a particularly fatal disease.

 

Indeed.

But one does needs to watch out for what acronyms spell.

I am waiting for an opportunity to submit for:

Persistent Idiopathic Somatic Symptoms.

 

Since the subject of the thread was "ME/SEID" I suggest that Adam starts a new thread to discuss alternative names for those who want to spend time doing so.

But I suspect there is a thread already for that which will also have gone through all the reasons why classification and terminology systems won't approve new eponyms.