ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

[Dx Revision Watch]

Thank you Suzy for all the amazing effort and work and vigilance you have put into the international classification. You are one of our unsung heroes.

Just so I have this straight(ish) in my head:

All the relevant terms have been restored to "its original place in ICD."

And this means the crisis of not having ME included in ICD-11 by March 30 has now passed?

Not really.

In sum, what they have done on March 26, is this:

1 Put PVFS as concept title (lead term) back under Other disorders of the nervous system.

2 Put BME and CFS back under concept title, PVFS, as specified Inclusion terms to PVFS (a reversal to what they had in early 2013).

3. Implemented my proposal of December 15, 2014 that (B)ME and CFS should be inserted under Exclusions to Fatigue. (So that is a change, because although the G93.3 terms are Exclusions under Malaise and fatigue in ICD-10, they haven't been in ICD-11 Beta.)

4 They have not approved and Implemented my proposal that PVFS should be inserted under Exclusions to Fatigue and there is no explanation for that. So that is left hanging.

5 This restoration to the Beta draft of the 3 legacy terms is pending further deliberations and decisions.

6 The deadline for submitting proposals for consideration for the 2018 version of ICD-11 is March 30.
The deadline for Member States to submit comments is May 31. There is a June 30 deadline for the Quality Assurance mechanism.*

There is a frozen version being released on April 4 for field testing use.

So anything could happen between now and late 2017. It does not mean that what we see in the draft today will go through unchanged for the earliest release of ICD-11, at some point after May 2018.

*Dates according to this ICD Revision/Dr Robert Jakob presentation, November 2016; dates given for Member States and Quality Assurance may have been revised since that presentation was given. There are no dates given on the Beta draft, other than the March 30 proposals date.

And thank you for your kind words, Scott.

 

[dangermouse]

@Dx Revision Watch Suzy THANK YOU so very much for all of your hard work, words cannot express my gratitude. You are, indeed, a hero.

 

[Dx Revision Watch]

@Dx Revision Watch Suzy THANK YOU so very much for all of your hard work, words cannot express my gratitude. You are, indeed, a hero.

Thank you, dangermouse. As I say, another announcement to come in a day or two.

 

[Dx Revision Watch]

By the way, that Proposal, last week, for a new group class under which "Bodily distress disorder" and "Body integrity dysphoria" would sit as sibling categories, under new proposed group class: "Disorders of bodily distress and bodily experience" has already been implemented:

So "Bodily distress disorder" is now located under group class:

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/794195577

Disorders of bodily distress and bodily experience

Parent(s)

• Mental, behavioural or neurodevelopmental disorders

Definition

Disorders of bodily distress and bodily experience are characterized by disturbances in the person’s experience of his or her body. Bodily distress disorder involves bodily symptoms that the individual finds distressing and to which excessive attention is directed. Body integrity dysphoria involves a disturbance in the person’s experience of the body manifested by the persistent desire to have a specific physical disability accompanied by persistent discomfort, or intense feelings of inappropriateness concerning current non-disabled body configuration.

Exclusions
Dissociative neurological symptom disorder ⇒

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

So the draft now looks like this:

Disorders of bodily distress and bodily experience

And you now need to click on the small grey dropdown arrows to reveal the child categories and for BDD, the three "grandchildren" severity specifiers:

> Bodily distress disorder
>> Mild bodily distress disorder
>> Moderate bodily distress disorder
>> Severe bodily distress disorder

> Body integrity dysphoria

 

[Solstice]

Thank you Suzy for all the amazing effort and work and vigilance you have put into the international classification. You are one of our unsung heroes.

Just so I have this straight(ish) in my head:

All the relevant terms have been restored to "its original place in ICD."

And this means the crisis of not having ME included in ICD-11 by March 30 has now passed?

Yeah, for me it's impossible to read it all and keep up with it. But the effort put in is greatly appreciated. Champion for the cause.

 

[Cheshire]

Body integrity dysphoria involves a disturbance in the person’s experience of the body manifested by the persistent desire to have a specific physical disability accompanied by persistent discomfort, or intense feelings of inappropriateness concerning current non-disabled body configuration.

Wow. This is very disturbing, how do you prove (or disprove) this "desire to be sick". Very dangerous to have a diagnosis based on such a weak and intangible criteria.

 

[Jigsaw]

And also, the Fatigue entry now shows:

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1109546957

Exclusions

• Combat fatigue ⇒
  
• Exhaustion due to exposure ⇒
  
• heat exhaustion ⇒
  
• exhaustion and fatigue due to pregnancy ⇒
  
• Bodily distress disorder ⇒
  
• Depressive disorders ⇒
  
• Sleep-wake disorders ⇒
  
• Bipolar or related disorders ⇒
  
• senile fatigue ⇒
  
• Chronic fatigue syndrome ⇒
  
• (Benign) myalgic encephalomyelitis ⇒
  

Though not PVFS under Exclusions, but it should also be under Exclusions, because PVFS is the lead term for CFS and (B)ME (as entered today). That may be an oversight. Or it may be that they have been considering placing PVFS under Fatigue with the other two entities differently classified. But I am long past trying to second guess their actions and intentions.

@Dx Revision Watch

Thanks for everything you're doing, and have done, Suzy. I can't imagine how hard you've had to work to get these changes implemented. You're doing an incredible job.

I'm confused about them saying that fatigue is excluded in cases of BDD - I thought BDD was their latest way of discounting CFS/ME as a real illness, as far as they're concerned.

As far as I'm concerned, BDD is establishment-speke for:

"We neither know nor care, so we'll say it's the patient's fault.

That way, we can insist that these mad hypochondriacs aren't entitled to any meaningful medical or financial support, thus saving ourselves a fortune in NHS costs and social security benefits.

Upon successful diagnosis of BDD, which is conveniently applicable to every single disease known, thanks to our ingenious criteria, we will then insist that they see a psych team to make them see the error of their ways, which, if they aren't mad already, will distress them so much that at least most of them will become basket-cases, at which point we will be justified in putting them into psychiatric "care", with lots of psychotropic drugs which most of them will be systemically intolerant of. We can call the intolerance signs and symptoms further evidence of catastrophising, which will feed nicely into the whole "it's all in your head" hypothesis.

If they refuse this course of "treatment", they will have played into our hands and we can safely say they are Uncompliant Patients who clearly have no desire to be well, thus reinforcing our assertion that they like being ill, or pretending to be ill, and we will then be justified in withdrawing any support the patient currently receives.

It's a win-win for us.

Oh, and we'll also say that 'carers' are actually 'enablers', and then we can do away with Carer's Allowance in the majority of cases, saving ourselves even more money that can be better spent on executive expenses, golfing holidays, and second homes abroad."

Just my opinion, of course. No aspersions being thrown here.



And I'm confused as to why fatigue is excluded also from CFS and (B)ME

Are they saying that fatigue ALSO EXISTS OUTSIDE OF THESE EXCLUSIONS, or that fatigue isn't a valid part of these conditions? And what's the assigned difference between Benign ME and ME ? The opposite of benign is malignant. "Malignant" usually applies to cancerous conditions. Are they categorising ME as benign or malignant, or benign and something else?

Sorry if I'm being dim. I expect my brain is pretending (rolls eyes) not to work properly today. It does that when it's stressed. Funny, that. Anyone would think that stress has a genuine impact on CFS/ME. Like it does on every genuine illness.

Thanks again for everything you're doing

 

[Dx Revision Watch]

Wow. This is very disturbing, how do you prove (or disprove) this "desire to be sick". Very dangerous to have a diagnosis based on such a weak and intangible criteria.

https://www.ncbi.nlm.nih.gov/pubmed/19132621

http://www.biid.org/

 

[Dx Revision Watch]

@Dx Revision Watch

I'm confused about them saying that fatigue is excluded in cases of BDD - I thought BDD was their latest way of discounting CFS/ME as a real illness, as far as they're concerned.

You have got it the wrong way round.

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1109546957

Under Fatigue, there is an Exclusion for Bodily distress disorder.

(Also an Exclusion for BME and CFS.)

The type of Exclusion that has been applied is this type:

"elsewhere classified, not to be coded here" (with a link to where the entity should be coded)

Which means that BDD should not be coded to Fatigue and is coded elsewhere (ie as BDD). There is a jump link next to the Exclusion which directs the coder to the correct location.

Bodily distress disorder ⇒

That arrow takes the coder to the correct place in the classification for BDD.

The Definition for BDD

"Bodily distress disorder is characterized by the presence of bodily symptoms that are distressing to the individual and excessive attention directed toward the symptoms, which may be manifest by repeated contact with health care providers. If a medical condition is causing or contributing to the symptoms, the degree of attention is clearly excessive in relation to its nature and progression. Excessive attention is not alleviated by appropriate clinical examination and investigations and appropriate reassurance. Bodily symptoms and associated distress are persistent, being present on most days for at least several months, and are associated with significant impairment in personal, family, social, educational, occupational or other important areas of functioning. Typically, bodily distress disorder involves multiple bodily symptoms that may vary over time. Occasionally there is a single symptom—usually pain or fatigue—that is associated with the other features of the disorder."


ICD-11's BDD definition, criteria, characteristics and the patient populations it potentially captures are very closely aligned with the DSM-5's SSD - not with Fink's BDS.

 

[Dx Revision Watch]

On December 30, 2014, I submitted a proposal for inserting Exclusions for the G93.3 legacy entities: Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome under Bodily distress disorder.

The proposal was Rejected on November 15, 2016, with the rejection note: "Exclusion terms must exist in the classification as entities to enable linking."

These three ICD-10 G93.3 legacy entities were restored to the public Beta platform on March 26, 2017.

A proposal for Exclusions for the G93.3 legacy entities was resubmitted by me, today.

I have also, today, requested a reciprocal Exclusion for BDD under PVFS, BME, CFS.

ICD Revision's Dr Geoffrey Reed told me in 2014 that once the terms were restored to the draft, he would be happy to consider Exclusions for these terms.

 

[Dx Revision Watch]

https://twitter.com/i/web/status/846742014221791234

Note: there is no "Chronic fatigue" in ICD-10 or ICD-11 or proposed for ICD-11. Dr Robert Jakob has a habit of referring to CFS as CF.

I have scolded him for this, in an email, a couple of weeks ago.

 

[Dx Revision Watch]

@Jigsaw I don't know whether you can cope with the following but it sets out some of the differences between BDD and BDS.

ICD-11 Proposal Mechanism:

http://apps.who.int/classifications...lGroupId=eb30c64f-dd10-41a2-8edc-f254cf431d73

For ICD-11, the S3DWG sub working group proposes to replace F48.0 Neurasthenia and all the F45.0 - F45.9 somatoform disorder categories (with the exception of Hypochondriasis) with a new and much simplified, single diagnostic category, for which the current suggested name is "bodily distress disorder" [1][2].

As defined for ICD-11, the proposed bodily distress disorder diagnostic construct has strong conceptual, characterization and criteria alignment with DSM-5's somatic symptom disorder [3]. In the ICD-11 Beta draft, somatic symptom disorder is listed under Synonyms to bodily distress disorder.

For both bodily distress disorder (as defined for ICD-11) and DSM-5's somatic symptom disorder, the distinction between medically explained and medically unexplained somatic complaints is abolished.

There is no longer the requirement for symptoms to be medically unexplained in order to meet the criteria, and the symptoms may or may not be associated with another medical condition: "If a medical condition is causing or contributing to the symptoms, the degree of attention is clearly excessive in relation to its nature and progression."* [2].

*Currently proposed to be revised to: "If another health condition is causing or contributing to the symptoms, the degree of attention is clearly excessive in relation to its nature and progression."

Thresholds to meet the criteria for bodily distress disorder and for somatic symptom disorder are substantially lower than those of the somatoform disorders which they replace: the presence of bodily symptoms that are distressing to the individual and excessive attention directed toward the symptoms; or a single symptom, for example, pain or fatigue, in association with the psychobehavioural features that define the disorder, will be sufficient to meet the diagnosis.

In an Australian and New Zealand Journal of Psychiatry commentary, Frances and Chapman (2013) argue that the somatic symptom disorder criteria - far looser than those of the ICD-10 and DSM-IV somatoform disorders, with low sensitivity and specificity and highly subjective, difficult to measure cognitions - present significant potential for misdiagnosis with, or misapplication of, an inappropriate psychiatric diagnosis [4].

Patients with chronic, troubling somatic complaints associated with any disease are potential candidates for an additional diagnosis of bodily distress disorder - if the clinician considers the criteria are otherwise met.

In a BMJ commentary, Frances (2013), highlights the particular vulnerabilities of some disease groups: patients with multisystem diseases like multiple sclerosis (MS), Behçet disease or systemic lupus erythematosus (SLE), where it may take several years before a diagnosis is arrived at; patients with one of the so-called, "functional somatic syndromes" (under which umbrella term chronic fatigue syndrome and myalgic encephalomyelitis have often been bundled); patients with rare diseases; patients presenting with single or multiple chronic somatic complaints of uncertain aetiology whose symptoms were, in hindsight, prodromal [5].

Patients diagnosed with chronic fatigue syndrome or myalgic encephalomyelitis, or awaiting a diagnosis, may be particularly vulnerable to misdiagnosis with, or misapplication of, an additional diagnosis of bodily distress disorder. I am not persuaded that the S3DWG sub working group has incorporated adequate safeguards for these patient groups within its proposed criteria [2][6].

The recommendation is to insert exclusions under Bodily distress disorder for Postviral fatigue syndrome; Benign Myalgic encephalomyelitis; and Chronic fatigue syndrome to mitigate the risk of misdiagnosis with, or misapplication of, an additional diagnosis of bodily distress disorder.

Potential for conflation of bodily distress disorder and bodily distress syndrome:

I have demonstrated in another proposal how the S3DWG's suggested name for the proposed replacement for the ICD-10 somatoform disorders has a history of usage (from at least 2007), in the literature and in the field, interchangeably with that of the already operationalized, divergent Fink et al. (2010) disorder construct; I have raised the alarm for the diagnostic and statistical implications for confusion and conflation between the two, and the difficulties for maintaining construct integrity, within and beyond ICD-11 [7].

The Fink et al. (2010) "bodily distress syndrome" disorder construct, which is already in use in Denmark and in several other EU countries, in research and clinical settings, is differently conceptualized, has a very different criteria set to ICD-11's BDD, and is intended to capture a different patient population.

Fink et al. (2010) consider their "bodily distress syndrome" disorder construct has the ability to capture the ICD-10 somatoform disorders, neurasthenia, "functional symptoms", noncardiac chest pain, chronic pain disorder, MCS and some others, but to also subsume and replace chronic fatigue syndrome, myalgic encephalomyelitis, fibromyalgia and irritable bowel syndrome (well described categories that are discretely classified in other chapters within ICD-10, ICD-11, and SNOMED CT), under a single, unifying "BDS" diagnosis [8][9].

Since researchers, clinicians and commissioners of services already do not differentiate between these two terms (and in some cases, one sees the conflations, "bodily distress syndrome or disorder" and "bodily distress syndrome/disorder"), these patient groups will be especially vulnerable to being misclassified.

Again, the recommendation is to insert exclusions under Bodily distress disorder for Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome to mitigate the risk of misdiagnosis with, or misapplication of, an additional diagnosis of bodily distress disorder.

See also: Proposal: Bodily distress disorder:

http://apps.who.int/classifications...lGroupId=c321880e-aa46-4328-ac19-7153c5e7a364

References:

1 Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. doi: 10.3109/09540261.2012.741063. [PMID: 23244611]

2 Gureje O, Reed GM. Bodily distress disorder in ICD-11: problems and prospects. World Psychiatry. 2016 Oct;15(3):291-292. doi: 10.1002/wps.20353. [PMID: 27717252]

3 American Psychiatric Association. (2013). Somatic Symptom and Related Disorders. In Diagnostic and statistical manual of mental disorders (5th ed.). Washington, DC: Author.

4 Frances A, Chapman S. DSM-5 somatic symptom disorder mislabels medical illness as mental disorder. Aust N Z J Psychiatry. 2013 May;47(5):483-4. [PMID: 23653063]

5 Frances A. The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill. BMJ. 2013 Mar 18;346:f1580. [PMID: 23511949]

6 Frances A. DSM-5 Somatic Symptom Disorder. J Nerv Ment Dis. 2013 Jun;201(6):530-1. [PMID: 23719325]

7 Proposal: Bodily distress disorder, ICD-11 Beta drafting platform Proposal Mechanism, March 2, 2017. http://bit.ly/2nWnyKd

8 Fink P, Toft T, Hansen MS, Ornbol E, Olesen F. Symptoms and syndromes of bodily distress: an exploratory study of 978 internal medical, neurological, and primary care patients. Psychosom Med. 2007 Jan;69(1):30-9. [PMID: 17244846]

9 Fink P, Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res. 2010 May;68(5):415-26. [PMID: 20403500]

 

[MEisnotMUPS]

Suzy what about the WHO rule that an illness cannot be classified under more than 1 category ? Hope that still applies, hence the much needed exclusions are added in the right places for ME.

 

[Dx Revision Watch]

A brief note about ICD-11 Beta codes:

ICD-11 will be an essentially electronic classification system, though there will be print versions available. The Print versions will have a lot less detail in them, for example, no Definitions.

On the ICD-11 platform, there are two components:

The Foundation

The MMS (Mortality and Morbidity Statistics) - which is a sub linearization of the Foundation and contains a smaller number of terms.

Only the listings in the MMS (which is the equivalent of the Tabular List in ICD-10) have codes displaying.

The coding structure for ICD-11 is different to ICD-10.

The codes assigned to categories and parent classes in the MMS change daily, as new terms are approved and added into the listings or as category groups are re-organized. So the codes are not stable at this point in the development process and won't be until early 2018.

So if you are referring to a category, it's preferable to refer to it by the name of the term (known as the "concept title" or "entity title") and not by the code, since the next day, it's likely to be assigned a different code.

 

[Dx Revision Watch]

Suzy what about the WHO rule that an illness cannot be classified under more than 1 category ? Hope that still applies, hence the much needed exclusions are added in the right places for ME.

No, it does not apply for ICD-11.

The ICD-10 convention that a category can be listed under only one parent class is abolished for ICD-11.

For ICD-11, categories can be parented under multiple parents, either within the same chapter or under parents in two or more chapters.

This means that diseases like skin cancers, which need to be classified under both Neoplasms and under Diseases of the skin can be parented under both chapters for ICD-11. There are several hundred terms that have multiple parents in ICD-11.

Diseases that belong to or affect multiple body systems, for example, systemic lupus erythematosus (SLE) and Behçet disease, can now be parented under two or more parents or under two or more chapters.

The disease or disorder is assigned to a "primary parent" from which it takes it code. Then it may be "secondary parented" under another chapter, where it appears in the MMS listing as what is known as a "grey child". It is is greyed out but cross maps back to the primary parent location in the classification.

In 2010, the Revision Steering Group posted a discussion paper on the potential for incorporating within ICD-11 a new chapter for Multisystem diseases [1].

This proposal was subsequently rejected, in early 2013, in preference to the consideration of generating a separate linearization from the Foundation, as a "virtual" multisystem chapter [2].

It is currently unclear whether ICD Revision intends to implement a multisystem linearization or whether diseases that would have been candidates for assigning to a "virtual" multisystem chapter, like for example, Behçet disease, will be represented solely through multiple parentage and the explicit listing in the content model of all body systems involved for that entity.

There is currently no evidence to suggest that TAG Neurology has plans for proposing to secondary parent one or more of the three legacy terms under another chapter.

But yes, it is important that Exclusions are inserted where needed.

1 Aymé, Chalmers, Chute, Jakob (2010). ICD Revision: Discussion paper: Multisystem Disorders.
http://bit.ly/2nnilKW

2 WHO ICD Revision Information Note 19: Multisystem Diseases Chapter in ICD, January 29, 2013.

 

[Dx Revision Watch]

@Dx Revision Watch

And what's the assigned difference between Benign ME and ME ? The opposite of benign is malignant. "Malignant" usually applies to cancerous conditions. Are they categorising ME as benign or malignant, or benign and something else?

The term has historical usage.

The term "benign myalgic encephalomyelitis" was first introduced in 1956, in a Lancet editorial which was later attributed to the former Chief Medical Officer, Sir Donald Acheson [1].

The designation "benign" had originally been suggested because no deaths had been recorded at the time from myalgic encephalomyelitis.

WHO included "benign myalgic encephalomyelitis" as an index entity within ICD-9 (published 1975).

For ICD-10 (published in 1992), WHO created a new category G93: Other disorders of brain, in Chapter VI: Diseases of the nervous system, and created a new code G93.3: Postviral fatigue syndrome, an entity previously in the symptom chapter of ICD-9. WHO moved benign myalgic encephalomyelitis under the new G93.3 code [2].

ICD-10 has continued to include the designation "benign" within its classification.

Given the high burden of morbidity and recorded mortalities (the earliest known recorded cause of death due to ME, CFS in the UK was 2003), there is no justification for retaining the designation "benign" for ICD-11.

For ICD-11, there is a proposal in for the deprecation of the term "benign".

ICD Revision has been asked to replace the term, "Benign myalgic encephalomyelitis" with "Myalgic encephalomyelitis."

For continuity and comparability with ICD-10 and with SNOMED CT International Edition and National Extensions, it has been proposed to list "myalgic encephalomyelitis (benign)" under Synonyms to Myalgic encephalomyelitis.

If this is accepted and implemented, the term will be listed in ICD-11 as "Myalgic encephalomyelitis."

1 A new clinical entity? Editorial; Lancet 1956 (May 26);789-790.
http://www.sciencedirect.com/science/journal/01406736/267/6926

2 A Summary of Chronic Fatigue Syndrome and its Classification in the International Classification of Diseases, Centers for Disease Control and Prevention, National Center for Health Statistics, March 2001. http://www.institutferran.org/documentos/icd_code.pdf

 

[Dx Revision Watch]

Suzy Chapman and Mary Dimmock submitted a Proposal for classification of the G93.3 legacy categories for ICD-11

There's a deadline, today.

In order to be considered for inclusion in the final version of ICD-11, proposals need to be submitted by today, Thursday, March 30.

Over the past few weeks, Mary Dimmock and I have collaborated on the preparation of a formal proposal and rationale for the restructure of the ICD-10 G93.3 category terms: Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome.

On Sunday, March 26, after a four year absence from the draft, "Team WHO" unexpectedly restored the G93.3 terms to the Beta platform.

They also approved my long standing proposal for exclusions under Fatigue for Benign myalgic encephalomyelitis and Chronic fatigue syndrome (though not yet for Postviral fatigue syndrome).

The terms were returned to their 2009 Beta location* with the caveat: "While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD."

All three terms are currently back under the Neurology chapter, under parent: Other disorders of the nervous system, with PVFS as the lead (or concept title) term, and BME and CFS specified as inclusions. The other content on the listing is much as it had stood in 2009.

Click here to view their listing on the Beta draft

I'm viewing this restoration as a "placeholder" while the work group continues to work towards consensus and we might expect revised proposals at some point in the future.

*In the ICD-11 Beta, as it had stood in early 2013, when they removed the terms from view in the public version of the drafting platform, they had been proposing CFS as the lead (concept title) term, with BME as the inclusion term, and PVFS under synonyms to CFS.


We submitted our Proposal on Monday - in good time for today's deadline.

In order to view our Proposal in the Beta "Proposal Mechanism" you will first need to register with the Beta platform.

You can register for access here: http://bit.ly/2n7Kdj4

Once you are registered and logged in, this is the URL for viewing and commenting on our Proposal: http://bit.ly/2n8I9qc

But for ease of access, we've put a copy of our Proposal and Rationale into a PDF, which you can download from my website here: http://bit.ly/2mQxWTS

I have also attached a copy to this post.


When submitting for a complex restructure of the hierarchy or relationship between a group of ICD terms, rationales for proposals need to be provided - so it's not a quick read.

I'm posting just the first four pages for you which set out the proposed restructure. For the Notes and Rationales that support our recommendations, see the full Proposal Document.

In the next post I will post instructions for commenting on proposals.

______________________________________________________________________________

Page 1

Proposal for the ICD-10 G93.3 legacy terms for ICD-11

How the G93.3 terms are currently represented in ICD-10: (CFS is included in the Index, only.)

Our Proposal for ICD-11: (CFS and ME assigned to separate codes; PVFS under Synonyms to ME. "Benign" dropped.)

Codes for illustrative purposes only; Beta draft codes change daily as terms are added or reorganized.

_____________________________________________________________________________

Page 2

Complex Hierarchical Changes Proposal

Other disorders of the nervous system

Proposal submitted to ICD-11 Revision on March 27, 2017

Detailed Explanation of the Proposal

This Complex Hierarchical Changes Proposal is for the ICD-10 legacy entities coded and indexed to G93.3.

Declarations: This submission has been prepared by Mary Dimmock and Suzy Chapman. Mary Dimmock serves on the Board of Solve ME/CFS Initiative and also works with other ME organizations. Suzy Chapman has no affiliations. This proposal has been submitted in personal capacities and not on behalf of any organizations. The authors declare no conflicts of interest.

In ICD-10 Volume 1: Tabular List, the G93.3 ICD concept title is Postviral fatigue syndrome; the inclusion term is Benign myalgic encephalomyelitis. Chronic fatigue syndrome is included in Volume 3: Alphabetical Index, only, and is indexed to G93.3.

In the absence of any proposals or rationales published by Topic Advisory Group (TAG) for Neurology, or by any other TAG, or by the ICD-11 MMS Joint Task Force during the preparation of this submission, the authors propose the restructuring of these entities taking their classification within ICD-10 Version: 2016 as the reference point [1].

Recommendation: For ICD-11, the G93.3 legacy entities should be retained under Chapter 08: Diseases of the nervous system. (See Rationale 3.2)

In ICD-10 Volume 1: Tabular List, the concept title is a child entity under parent class: Other disorders of brain.

In May 2010, a change of hierarchy for the ICD-10 G93.3 legacy entities was recorded in the iCAT (Collaborative Authoring Tool). Parent: Other disorders of brain was removed and replaced with parent: Other disorders of the nervous system [2].

Recommendation: For ICD-11, the G93.3 legacy entities should be retained under parent:Other disorders of the nervous system. (See Rationale 3.3)


The following changes to the hierarchy between the three entities are proposed:

Add new Concept Title: Chronic fatigue syndrome (See Note 1)

Remove Concept Title: Postviral fatigue syndrome

Add new Concept Title: Benign myalgic encephalomyelitis (See Rationale 3.4)
Replace new Concept Title: Benign myalgic encephalomyelitis with Myalgic encephalomyelitis (See Note 2)

Add: Postviral fatigue syndrome under Synonyms to new Concept Title: Myalgic encephalomyelitis (See Note 3)

Assign unique sequential codes to each new Concept Title.​

These new Concept Titles are proposed to be listed in the Foundation, MMS Linearization, and Special tabulation neurological conditions linearization.

References:

1 International Statistical Classification of Diseases and Related Health Problems 10th Revision (ICD-10) Version: 2016. http://apps.who.int/classifications/icd10/browse/2016/en#/G93.3 [Accessed March 12, 2017]

2 Change history, iCAT (Collaborative Authoring Tool) drafting platform, May 1, 2010. [Accessed May 24, 2010]

_____________________________________________________________________________

Pages 3 and 4

Proposed hierarchical restructure:

1. ICD Concept Title
1.1 Fully Specified Name: Chronic fatigue syndrome


2. Classification Properties
2.1 Parents: Primary: Diseases of the nervous system > Other disorders of the nervous system


2.2 Type
Disease
Disorder / Syndrome


2.3 Use and Linearizations
Use: Primary Care / Clinical / Research
Linearization(s): Morbidity / Mortality / Neurology


3. Textual Definition(s)
[See Rationale 2 and 4]


4.1.1 Synonyms (See Note 3.1)

CFS - [chronic fatigue syndrome]


4.2 Inclusions
There are no inclusions for this entity


4.3 Exclusions (See Note 4)

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

1. ICD Concept Title
1.1 Fully Specified Name: Myalgic encephalomyelitis


2. Classification Properties
2.1 Parents: Primary: Diseases of the nervous system > Other disorders of the nervous system


2.2 Type
Disease
Disorder / Syndrome


2.3 Use and Linearizations
Use: Primary Care / Clinical / Research
Linearization(s): Morbidity / Mortality / Neurology


3. Textual Definition(s)
[See Rationale 2 and 4]


4.1.1 Synonyms (See Note 3.1)

ME - [myalgic encephalomyelitis]
myalgic encephalomyelitis (benign)
myalgic encephalomyelitis syndrome
myalgic encephalitis
myalgic encephalopathy
postviral fatigue syndrome
PVFS - [postviral fatigue syndrome]


4.2 Inclusions
There are no inclusions for this entity


4.3 Exclusions (See Note 4)


The authors recommend the following historical terms for inclusion in the Index:

Index terms

Akureyri disease
Iceland disease
epidemic neuromyasthenia


Notes:

Note 1: Inclusion of chronic fatigue syndrome in Foundation and MMS Linearization: The authors support the principle set out in ICD-10 Volume 2: Instruction Manual (2010): "The categories have to be chosen to facilitate the statistical study of disease phenomena. A specific disease entity that is of particular public health importance, or that occurs frequently, should have its own category." [1]. The authors support the precedent set by the Canadian Institute for Health Information (CIHI) that is responsible for the development, update and maintenance of ICD-10-CA, and the German Institute of Medical Documentation and Information (DIMDI) that is responsible for the development, update and maintenance of ICD-10-GM in adding chronic fatigue syndrome to their Tabular Lists.

References:

1 International Statistical Classification of Diseases and Related Health Problems, 10th Revision, Volume 2 Instruction Manual, 2010 Edition. http://www.who.int/classifications/icd/ICD10Volume2_en_2010.pdf

2 International Statistical Classification of Diseases and Related Health Problems, Tenth Revision, Canada, Volume One ‒ Tabular List, Canadian Institute for Health Information 2015. http://assets.ibc.ca/Documents/Auto Insurance/ICD-10-CA 2015.pdf

3 Internationale statistische Klassifikation der Krankheiten und verwandter Gesundheitsprobleme 10. Revision German Modification Version 2017. https://www.dimdi.de/static/de/klassi/icd-10-gm/kodesuche/onlinefassungen/htmlgm2017

etc.

For full Notes and Rationale: http://bit.ly/2mQxWTS

_____________________________________________________________________________

A caveat about our recommendations: Our proposal recommends that ME and CFS are not listed under Postviral fatigue syndrome and are assigned unique codes. We have also requested reciprocating exclusions for Fatigue, and for Bodily distress disorder; and that the designation, "Benign" is deprecated.

We appreciate that many, including the IOM, have expressed concerns with the term "CFS." But realistically, it cannot be removed at this time because it is still used clinically and for social security and insurance purposes. Additionally, WHO requires statistical continuity from one ICD edition to another. During the transition period, which will span several years since member states will set their own timescales for implementation, WHO will be collecting data from both ICD-10 and ICD-11.

Once ICD-11 is released, it will be placed on an annual update and revision schedule (the first in 2019). Our understanding is that WHO intends that the platform will remain open for suggestions for revisions from stakeholders, as well as from member states and collaborating centres. Ongoing and future scientific developments will inform the annual revisions to the classification.


In the next post: How to comment on our proposal, and on the Beta as it currently stands.

I shall be busy over the next few days and won't be monitoring my Phoenix Rising Inbox. If you have queries in relation to the Beta, please shoot me an email via my website Contact Form and I'll get back to you as soon as I can.

 

[Dx Revision Watch]

Submitting comments on Proposals

Comments will only be accepted via the Beta "Proposal Mechanism."

You can register for access here (it only takes a minute or two): http://bit.ly/2n7Kdj4

This is the URL for viewing and commenting on our Proposal: http://bit.ly/2n8I9qc

If you are commenting on behalf of an organization, please state the organization's name and in what capacity.

The Comment box for our proposal is located right at the bottom of the web page.

You won't be able to edit or delete your comment once it's been submitted ‒ so you may want to prepare a draft, first. You can include references to papers, reports etc in support of your comments but you won't be able to upload files ‒ and it's a plain text field only.

At the moment, it's not clear by what date comments on proposals will need to be submitted in order to be taken into consideration for the version of ICD-11 that is scheduled for release in 2018. But we recommend that comments are submitted within the next two or three weeks.

As well as commenting on our proposal, now that ICD Revision has restored the three terms to the draft, you can also comment on how the draft currently stands.

(The Beta draft currently has PVFS as lead term, with BME and CFS specified as inclusion terms and coded to the same code as PVFS. This is almost the same as in ICD-10, except they have now included CFS in the main Tabular listing, as an inclusion term, instead of just being an entry in the Index.)

The URL for the ICD Revision work group's listing on which comments can be submitted is:

http://bit.ly/2o8lhMA

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/569175314


For our Proposal: The Comment Box is right at the end of the page:

https://dxrevisionwatch.files.wordpress.com/2017/03/g93-3-chapman-dimmock-proposal.png

For ICD Revision's current listing of the terms: Look for the grey and yellow "speech bubble" button, top right (flagged in my screenshot in grey):

https://dxrevisionwatch.files.wordpress.com/2017/03/pvfs-icd112.png

 

[AndyPR]

I have no idea how you keep all this straight in your head Suzy, I wouldn't know up from down, left from right if I tried to understand all fo this. Thank you so much for all your work on it.

 

[Dx Revision Watch]

I have no idea how you keep all this straight in your head Suzy, I wouldn't know up from down, left from right if I tried to understand all fo this. Thank you so much for all your work on it.

Thanks, Andy. I've closely monitored the ICD Revision process since 2009, through all its various iterations - the iCAT, the Alpha and Beta. I have to say I shall be very glad when they finally release ICD-11 and I can get back to work on my garden.