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

ME/SEID would be definitionally appropriate on literal terminological grounds, if associated with superior diagnostic criteria, such as the CCC or ICC.

This would appear to be an improvement vs stigma, accurate understanding etc. for NICE purposes and actually offer a solid measure to adopt.

What are the flaws with this idea?

 

(Rooted in two posts here:
https://www.s4me.info/threads/winni...-owning-the-language.13787/page-3#post-240154
and
https://www.s4me.info/threads/break...egic-problem-to-beat.13787/page-4#post-240648"

"Breaking down the role of "chronic fatigue" terminology in ensuring our weakness, so we can identify the strategic problem to beat")

 

The fudge may go on for another generation, for all we know. There is no reason to assume not, at this point IMO. ME is mixed in value as a term, sure. SEID is merely descriptive, but in a better way and without the inescapable connotations of "CF" that we are entirely captive of. Entirely captive, on every front.

My Q is whether this is a better a fudge? I would not be surprised to see our grandchildren living with a fudge, therefore quality and harm minimisation of the fudge is important.

It shouldn't do, as this thread is expressly about the literal choice of letters and literal meanings of words to propose replacing ME/CFS with ME/SEID. Not diagnostic criteria.

I am assuming that CCC, ICC or a future ICC v2 would govern it. But that would be a different diagnostic criteria thread, not this one. This is about the illness name, a terminological, vocabulary based thread.

Also nothing stopping anyone from still using the term ME alone, which I probably will still do.

 

Yes, I suggested this in 2015.
It would move away from chronic fatigue syndrome, which I think is a terrible name. But many researchers, clinicians and institutions are not willing to go to with myalgic encephalomyelitis on its own, but will use it in combination with something else.

It's my impression that it would be easier to argue for disability supports for "systemic exertion intolerance disease" than "chronic fatigue syndrome" as the latter just suggests fatigue is the problem.

 

I follow your lead proudly then

Absolutely. With similar gains in wider society, of which medics, scientists, funders, relatives, neighbours, politicians and lawyers are a part.

 

(Thread renamed to accommodate that for further clarification and moderation purposes)

 

As the only human in the known universe to actually prefer the name CFS, I offer the following compromise--The Kronic or Kron (which can be used as an adjective--s/he is very Kroned {or Kronned} out). For marketing and fundraising purposes a really horrible sounding name is highly prefered, so I suggest Non-Fatal Near Death Disease (NFNDD) or Non-Fatal Mostly Dead Disease (NFMDD). Since sadly and unfortunately some folks actually die of this disease, maybe better is Mostly Non-Fatal Near Death Disease (MNFNDD).


The Kronic>Kron>CFS>MEC/CFS>I Can't Get Much Done Anymore Disease (ICGMDA)>Stuff That Used To Take Me Five Minutes To Do But Now Takes Me Five Days or Five Weeks To Do Disease> ME

 

Lots of potential for a Snoop Dog piece in that ensemble

 

For what it's worth:

From a classification and terminology perspective:

Neither the WHO, Geneva, nor the U.S. ICD-10-CM (developed, managed and updated by NCHS-CDC), nor the Canadian Institute for Health Information (CIHI), nor the Australian Institute of Health and Welfare (AIHW), nor Germany's Deutsches Institut für Medizinische Dokumentation und Information (DIMDI) will permit the use of two ICD entities hyphenated as either Concept Title terms, specified inclusion terms or Synonyms terms.

Nor would they permit the use of abbreviations like "ME/CFS" or "CFS/ME" or "ME/SEID" or any combination of these as Concept Title terms or inclusion terms.

(NB: the term "Systemic exertion intolerance disease" or "SEID" has not been included in any edition of ICD-10. No decision to include "Systemic exertion intolerance disease" in the U.S.'s ICD-10-CM has been made and the WHO has no proposal to include "SEID" in ICD-11.)

ICD-11 will accept abbreviations as Index terms, but as single entities and only in the following format ie including the full name in square brackets:

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


The SNOMED CT terminology system is now used in around 34 countries, including mandatory use in NHS England, and used in the U.S.

Similarly, SNOMED CT will only accept single terms as the "Fully specified name (FSN)" or "Preferred" term for an SCTID Concept term.

SNOMED CT designates the following Synonyms terms as "Acceptable" terms. (Note Postviral fatigue syndrome has been separately coded in SNOMED CT since July 2015.)

CFS - Chronic fatigue syndrome Acceptable
ME - Myalgic encephalomyelitis Acceptable

So the mandatory classification system for use in over 100 Member States would not accept "ME/Systemic exertion intolerance disease SEID" nor "ME/SEID" nor "Myalgic encephalomyelitis/Systemic exertion intolerance disease".

Nor would the leading terminology system, SNOMED CT.

It would also present problems for ICD-10 and ICD-11 for the backward and forward mapping tables and for the ICD-10 and ICD-11 to SNOMED CT maps.

It would also present problems for the WHO for backward compatibility and comparability of morbidity statistics over time with earlier editions of ICD, and for analysis of data reported using different editions of ICD, eg ICD-10; the various national adaptations of ICD-10, and ICD-11 (after January 01, 2022). A few countries, including Italy, are still using ICD-9 with no plans yet to migrate to ICD-10.

The final update for the WHO's international version of ICD-10 (ICD-10 Version:2019) was released a couple of weeks ago. ICD-10 cannot be revised now, other than for corrections and exceptional additions like important new strains of viruses - so any hypothetical hybrid term could not be incorporated into ICD-10, which will continue to be used by Member States for a number of years until individual countries have prepared their health systems to adopt ICD-11.

Those countries licensed by the WHO to develop clinical modifications for morbidity use can include new terms. But they are required to follow WHO ICD conventions, so they would not be able to include a hybrid term coded to a single code, either.

 

Beyond what I manage to absorb from your expert posts, I am ignorant of this. I hadn't noticed the point you just made when I peeked at the databases myself after your other threads - thanks for highlighting.

How did the NHS/NICE use of ME/CFS fit into this?

 

I am also thinking about how the UK leads the spirit of the problem....

 

Lots of other agencies/similar in other countries also use “ME/CFS” including the NIH and the CDC. So there is a precedent for agencies using two acronyms together in many contexts.

 

Def is. My understanding from @Dx Revision Watch's other threads is that there is some optionality as to when and how WHO structures are imported locally.

Would be interesting to know more about how that does or doesn't happen or gets nuanced.

I would imagine it's something to do with terminology being matched in the background anyway for global reporting purposes, but now I'm just guessing

 

I know some medics find the term SEID, hilarious. Unfortunately.

I recall a filmed talk Dr. Lenny Jason gave to I believe, other psychologists. Quite a number in the audience laughed when the term SEID was explained.

I use ME.

 

That's v interesting....

Do you remember what exactly they laughed at? Was it the immediate wording, before any explanation? Or were they laughing at it along the lines of "that's just chronic fatigue syndrome"?

I'm trying to get a handle on the instinctive emotional reaction to the term. Although it definitely doesn't represent society with an audience like that though.

 

@InfiniteRubix

I think it was the wording.
I will try to locate the video, and post it here. I think it was 2 or 3 years ago.

 

Unpopular opinion but I actually prefer the term SEID over ME or ME/CFS.

Because there is such a long history of stigma attached to the latter terms.

It might not be perfect, but it's a descriptor. We do have a systemic intolerance to exertion.

I could tell someone I have SEID without having to go into a long caveat to undo any preconceptions they might have about ME or ME/CFS. Most lay people have never heard of SEID so wouldn't have stigmatising preconceptions.

It is less trivialising than CFS, and less stigmatised than ME.

That's my view based on the name alone, without getting into debates about criteria, what's what and what's not, etc.

 

My preference would be to refine the acronym ME, if needed, in the same way fibrositis became FM.

I've sometimes wondered if myasthenic encaphalopathy (brain dysfunction characterised by muscle weakness) would be better. It still retains the ME acronym without sceptics being able to leap on it as inaccurate.

On a side note: would it be worth implementing a 'no debates about criteria outside of threads explicitly on criteria' rule? It would stop the potential derails.

 

Yes, some agencies do use two acronyms hyphenated together on their website texts, for example.

In the case of NICE, using "CFS/ME" or "ME/CFS" isn't particularly problematic from a classification perspective, since NHS England uses the WHO's international edition of ICD-10 and CFS and BME (now ME for ICD-10 Version: 2019), are both coded to the G93.3 Concept Title code.

But the U.S.'s ICD-10-CM has BME coded to G93.3 and CFS (as CFS NOS) coded to R53.82, so these two terms are not aligned for coding in the U.S.'s ICD-10-CM, though the CDC does nevertheless use "ME/CFS" on its website texts.


But as I've said in my earlier post, CDC is responsible for managing and revising the content of the U.S.'s ICD-10-CM and is obliged to follow ICD conventions within the U.S.'s classification system for data collection.

ICD-10-CM codes are essential in the U.S. for billing and reimbursement. (For mental disorders, all categories in the DSM-5 are mapped to an ICD-10-CM code for billing and reimbursement.)

ICD-10 codes are also required by NHS England and there is a map between ICD-10 codes and the SNOMED CT UK Edition terminology system.

For example, if IAPT is successful in obtaining approval for its November 2019 request to add DSM-5's Somatic symptom disorder term to the UK SNOMED CT Edition, Somatic symptom disorder will be assigned a new SNOMED CT SCTID code. This new code will be mapped to an ICD-10 code for use in patient records and in the new IAPT Data Set v2.0 that is scheduled to be implemented on April 01, this year.