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

adambeyoncelowe said:
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.
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I feel I should mention that Fibromyalgia has lost its discrete code for ICD-11. For ICD-11, Fibromyalgia was relocated in May 2015 under the new Chronic primary pain block in the Symptoms, signs chapter. Rather than being assigned a new code in its new location, it is now rolled up an inclusion term under MG30.01 Chronic widespread pain in the ICD-11 equivalent of the Tabular List (which is the Mortality and Morbidity Statistics Linearization where the codes are) and takes the MG30.01 Chronic widespread pain code.


With regard to terminology and classification of the G93.3 legacy terms, this is an official WHO statement:

In response to the many proposals on Chronic fatigue syndrome, the WHO Secretariat has conducted a vast amount of research.

Findings: The condition is characterized by chronic, profound, disabling, and unexplained fatigue and coinciding symptoms such as sleep problems or post-exertional malaise. There is no agreement on a reliable diagnostic symptom pattern. The etiology is still being discussed and there is no uniform treatment approach with reliable outcomes. The only constant is the lead symptom ‘fatigue’ that persists over time.

Decision: As a result of this study, the category ‘postviral fatigue’ that is the indexing target, will not be changed as currently there is no evidence to suggest a better place. The entity will retain its name and remain within the Nervous system chapter.

The Medical and Scientific Advisory Committee and the Classification and Statistics Advisory committee supported this decision.

Team3 WHO 2018-Nov-19 - 07:10 UTC​



So until the science is there, good luck with any proposals for potential changes of terminology for "ME".

If the now sunsetted external Topic Advisory Group for Neurology and its internal Managing Editor/lead WHO Secretariat (Dr Tarun Dua) had had their way, CFS would have replace PVFS as the Title Concept (lead term); BME would have been the specified Inclusion term under CFS; and PVFS would have become an Index term. This is how the Beta draft had stood in early 2013.

And Dr Dua had wanted the terms deleted from the Neurology chapter and relocated under the Symptoms, signs chapter a child category under Symptoms, signs or clinical findings of the musculoskeletal system.
 
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MerryB said:
...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.
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The term "SEID" was a Recommendation only by the IOM Panel, 5 years ago, in January 2015. Since then, the term has not been adopted by any U.S. federal agency and has not been added to the U.S.'s ICD-10-CM nor to the U.S Edition of SNOMED CT terminology system.

And since it doesn't have an ICD-10-CM code for reimbursement - U.S. clinicians cannot use the term.
 
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InfiniteRubix said:
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
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The WHO publishes what is known as the "international edition" of ICD-10.

Since its release in 1990, ICD-10 has been updated on an annual and three yearly update schedule. The responsibility for its maintenance and update lies with the WHO-FIC Update and Revision Committee (now replaced by the ICD-11 CSAC and MSAC committees).

The most recent and final update in the life of ICD-10 is ICD-10 Version: 2019, here: https://icd.who.int/browse10/2019/en#/ which was released a few weeks ago.

This is the version for which the prefix "Benign" has been retired from the "Benign myalgic encephalomyelitis" inclusion term. See: https://icd.who.int/browse10/2019/en#/G93.3


WHO Member States are expected to use the most recently updated version of ICD-10.

But this is not just a matter of installing the most recent update package on their computer systems and in practice, it may take some Member States a year or more to review their code sets and prepare for mandating Version: 2019.

(I currently have a query in with NHS Digital about whether it plans to implement Version: 2019 for NHS England or might skip Version: 2019 altogether, in preference for transitioning to ICD-11, when it has completed all its preparation work - which will be some years in the future.)


ICD-10 is used for reporting Mortality (cause of death) data to WHO and also for recording Morbidity (illness and disease) data.

A number of countries using the international version of ICD-10 for Mortality data have been licensed by the WHO to adapt ICD-10 for Morbidity use to suit their countries' particular requirements.

The U.S. for example, adopted ICD-10 for Mortality use in 1999 but did not implement its adaptation (ICD-10-CM) until October 2015. Until that point, the U.S. was using ICD-10 for Mortality and ICD-9-CM for Morbidity.

Around 25 Member States are using adapted versions of ICD-10. These are known as "clinical modifications (CMs)" or "national modifications" or "national adaptations". Some Member States have adopted CMs from other countries and use these or use translated versions of these.

These countries are responsible for the content and updating of their CMs - not the WHO, Geneva. Though as I have said in earlier posts, they are obliged to follow ICD editorial guidelines and conventions.


As some of you will be aware, there are differences in the coding of PVFS; BME; ME; and CFS between several of these CMs.

Extracted from PDF (to save me time):

Update on the classification of PVFS, ME and CFS for ICD-11 ICD-11 Report One | November 2019, Includes updates on Pages 1 and 5 v3 18/02/20, Suzy Chapman

https://dxrevisionwatch.files.wordp...-classification-of-pvfs-me-cfs-for-icd-11.pdf


Canada (ICD-10-CA): Postviral fatigue syndrome is the G93.3 Tabular List Concept Title. Benign myalgic encephalomyelitis; and Chronic fatigue syndrome are both inclusions under G93.3 in the Tabular List.

Germany (ICD-10-GM): Chronisches Müdigkeitssyndrom [Chronic fatigue syndrome] is the G93.3 Tabular List Concept Title. Chronisches Müdigkeitssyndrom bei Immundysfunktion; Myalgische Enzephalomyelitis; and Postvirales Müdigkeitssyndrom are all inclusions under G93.3 in the Tabular List.

United States (ICD-10-CM): Postviral fatigue syndrome is the G93.3 Tabular List Concept Title. Benign myalgic encephalomyelitis is the inclusion under G93.3 in the Tabular List. But Chronic fatigue syndrome (as “chronic fatigue syndrome NOS”) is classified in the Tabular List in Chapter 18: Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified as an inclusion under code R53.82 Chronic fatigue, unspecified. (NOS = Not Otherwise Specified.)

There is an Excludes1: postviral fatigue syndrome (G93.3) exclusion under the R53.82 code and a reciprocal Excludes1: chronic fatigue syndrome NOS (R53.82) exclusion under the G93.3 code.


What Exclusions have been added under Concept Titles (and the type of exclusion) may also vary between CMs.

Note: The United States’ ICD-10-CM (which has been adopted for use by Belgium, Luxembourg and parts of Spain) is the only modification of ICD-10 that classifies chronic fatigue syndrome (as “chronic fatigue syndrome NOS”) under the Symptoms, signs chapter.

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Member States licensed to develop CMs have different schedules for their update and revision processes; some may be public processes with public meetings to discuss changes and additions (the NCHS-CDC holds twice yearly public meetings followed by a stakeholder feedback period), others are not public processes.

Some Member States publish their CMs and associated documentation online for free access (the U.S. does annually); others like Canada and Australia require licenses for access and there is no public availability of their Tabular Lists, Alphabetical Indexes or Instruction Manuals.

There is no copy of the Australian ICD-10-AM publicly available, but I was sent a screenshot by a coder, and it appears that for ICD-10-AM, the prefix "Benign" has already been retired from "Benign myalgic encephalomyelitis" in the ICD-10-AM Tabular List. (Note this change predates the retirement of "Benign" for the recently released, WHO's ICD-10 Version: 2019.)

So there is a degree of variability between the CMs and the WHO's international version of ICD-10 for the G93.3 entities.

The CMs can also absorb the changes to the international version.

The U.S. has added hundreds of additional terms to its CM for its billing and reimbursement processes. It has also added Somatic symptom disorder, as an ICD-10 code is needed for this DSM-5 term, and is the only CM to have added Somatic symptom disorder.

I hope this covers most of your queries @InfiniteRubix.
 
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Dx Revision Watch said:
I feel I should mention that Fibromyalgia has lost its discrete code for ICD-11. For ICD-11, Fibromyalgia was relocated in May 2015 under the new Chronic primary pain block in the Symptoms, signs chapter. Rather than being assigned a new code in its new location, it is now rolled up an inclusion term under MG30.01 Chronic widespread pain in the ICD-11 equivalent of the Tabular List (which is the Mortality and Morbidity Statistics Linearization where the codes are) and takes the MG30.01 Chronic widespread pain code.


With regard to terminology and classification of the G93.3 legacy terms, this is an official WHO statement:

In response to the many proposals on Chronic fatigue syndrome, the WHO Secretariat has conducted a vast amount of research.

Findings: The condition is characterized by chronic, profound, disabling, and unexplained fatigue and coinciding symptoms such as sleep problems or post-exertional malaise. There is no agreement on a reliable diagnostic symptom pattern. The etiology is still being discussed and there is no uniform treatment approach with reliable outcomes. The only constant is the lead symptom ‘fatigue’ that persists over time.

Decision: As a result of this study, the category ‘postviral fatigue’ that is the indexing target, will not be changed as currently there is no evidence to suggest a better place. The entity will retain its name and remain within the Nervous system chapter.

The Medical and Scientific Advisory Committee and the Classification and Statistics Advisory committee supported this decision.

Team3 WHO 2018-Nov-19 - 07:10 UTC​



So until the science is there, good luck with any proposals for potential changes of terminology for "ME".

If the now sunsetted external Topic Advisory Group for Neurology and its internal Managing Editor/lead WHO Secretariat (Dr Tarun Dua) had had their way, CFS would have replace PVFS as the Title Concept (lead term); BME would have been the specified Inclusion term under CFS; and PVFS would have become an Index term. This is how the Beta draft had stood in early 2013.

And Dr Dua had wanted the terms deleted from the Neurology chapter and relocated under the Symptoms, signs chapter a child category under Symptoms, signs or clinical findings of the musculoskeletal system.
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I think international medical terminology and what we use in everyday language are different, and that's fine. As you point out, changing the WHO terminology will be a nightmare.

I also don't think it's likely anyone will agree to a name change any time soon. I see this more as a 'what-if' thread, rather than an attempt to change official terms.
 
adambeyoncelowe said:
I think international medical terminology and what we use in everyday language are different, and that's fine. As you point out, changing the WHO terminology will be a nightmare.

I also don't think it's likely anyone will agree to a name change any time soon. I see this more as a 'what-if' thread, rather than an attempt to change official terms.
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But "what we use in everyday language" doesn't amount to anything when patients are being coded and referred for services according to the terminology and codes in the mandatory systems in use for any particular country.
 
Referring to ones disease as "ME/SEID" amongst yourselves isn't going to stop patients from being identified in their primary care practice patient records as being potential candidate for referral for IAPT or for referral to a "MUS one-stop-shop" service - you'll still be identified in your records as either SNOMED CT 52702003 Chronic fatigue synsdrome or ICD-10 G93.3 PVFS, ME, CFS, or if unlucky, by an F45 code.

Until we have the science, in my opinion there is little to be gained by speculating on the suitability of using other terminology. But if you want to do that, that is of course your prerogative.
 
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Many thanks indeed.

The distinction to be drawn is between officialdom and health stats on one side Vs everyday spoken and written language on the other. There is fat overlap and a symbiotic relationship of one leading and holding back the other, definitely. There is thus a chicken and egg characteristic of change needing to start somewhere too, when the 'problem statement' can be correctly identified and change then correctly identified.

An annoying example of that distinction is the singular explanatory clarity of when someone is described as chronically fatigued or has chronic fatigue. Whatever its sins, the term is everyday language and the accepted social programming of how to explain the claim of a diagnosis (conversation on that in the linked thread above, as opposed illness acronyms here).

In political and marketing terms, i.e. the non officialdom side of the equation to start, such a problem would benefit from focus groups. Trying to bridge what is acceptable to us and actually is understood without prejudice by laypeople.
 
I'd also add that a social name change and rebrand can start whenever we start the process viably.

(Not an argument for SEID specifically)
 
I also think the IOM Panel was remiss in not including a very big caveat that the term "SEID" was just one of a number of Recommendations.

And that until those Recommendations had been

a) reviewed by U.S. federal health agencies;
b) responded to;
c) put out for testing and consultation; and
d) a decision on whether to adopt any of the Panel's Recommendations arrived at.

that the "SEID" term remained just that - a Recommendation.

And yet within days, I noted people on Twitter using the term and applying it to themselves and at least one UK org using the term, and the dreadful UpToDate site using the term by an editor who had acted as an external reviewer of the IOM Report - so he should have known better than to start using the term as though it had been adopted already by U.S. health agencies - which it had not.
 
adambeyoncelowe said:
My preference would be to refine the acronym ME, if needed, in the same way fibrositis became FM.
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I do like this....

I would honestly like absolutely any acronym that expunges CF from the illness name. I'll leave it to that other thread linked at the start of this thread, but to still have the term ME, or any term, without killing the social language validity and clarity of CF or CFS will leave us with that rot, still seeping into every area that defines our weakness.
 
To clarify:

I oppose the use of "fatigue", "chronic fatigue", "fatigue syndrome", "fatiguing syndrome", or "chronically fatigued" whether these terms are used by patients, by the media or by professionals, and in any context.

I avoid using the term "chronic fatigue syndrome" unless I am obliged to do so because the context demands that I use it, for example, if writing about service provision or classification and terminology systems.

I don't support the use of "SEID" for a number of reasons and crucially, the term has not been adopted for use by U.S. health agencies nor has it been added to the ICD-10-CM by NCHS-CDC, nor added to ICD-10 or ICD-11 by the WHO.

I cannot imagine NICE would be in favour of using the term, either, since the WHO has not adopted the SEID term.

I don't personally see any point in speculating about potential alternative names like "myasthenic encaphalopathy" whether as potential formal proposals for changes to any of the various classification and terminology systems, or whether for use by patients informally amongst themselves or when discussing the disease with members of the public or with journalists etc.

These discussions about alternative terminology can feel like Groundhog Day.

But that's just my position.


At the moment, I am very concerned and preoccupied with the prospect of DSM-5's Somatic symptom disorder potentially being added to SNOMED CT UK Edition in order that IAPT can obtain use of the DSM-5's SSD diagnostic term and obtain a code in time for inclusion in its new IAPT Data Set v2.0 that is scheduled for roll-out on April 01.

If this request is approved, this will embed the DSM-5's SSD term, a SNOMED CT code and a mapping code to ICD-10 into NHS England, quietly and via a backdoor.

I obtained exclusions for PVFS; BME; and CFS under ICD-11's Bodily distress disorder in January.

There are no exclusions for these terms under DSM-5's SSD.

I am rather more concerned about this at the moment.

But if issues around coding require clarification, I am happy to provide clarification.
 
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Dx Revision Watch said:
I oppose the use of "fatigue", "chronic fatigue", "fatigue syndrome", "fatiguing syndrome", or "chronically fatigued" whether these terms are used by patients, by the media or by professionals, and in any context.

I avoid using the term "chronic fatigue syndrome" unless I am obliged to because the context demands that I use it, for example, if writing about service provision or classification and terminology systems.
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Definitely. Never in doubt :) The officialised terminology that there currently is, is the officialised terminology.

Dx Revision Watch said:
I don't support the use of "SEID" for a number of reasons and crucially, the term has not been adopted for use by U.S. health agencies nor has it been added to the ICD-10-CM by NCHS-CDC, nor added to ICD-10 or ICD-11 by the WHO.
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It is an important point
 
Besides the classification issue with SEID (or lack thereof) that @Dx Revision Watch described very well, two things to note:

- intolerance to exertion is not specific to ME, it also happens in severe forms of a number of diseases: myopathies, COPD, cardiovascular & genetic conditions...

- intolerance to exertion can easily be mixed up with intolerance to exercise

Eventually it always boil down to the same fact: the root cause of ME must be identified, or at least a diagnostic biomarker.
 
cassava7 said:
Besides the classification issue with SEID (or lack thereof) that @Dx Revision Watch described very well, two things to note:

- intolerance to exertion is not specific to ME, it also happens in severe forms of a number of diseases: myopathies, COPD, cardiovascular & genetic conditions...

- intolerance to exertion can easily be mixed up with intolerance to exercise

Eventually it always boil down to the same fact: the root cause of ME must be identified, or at least a diagnostic biomarker.
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Well said.
 
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