Update to Letter to key Revision personnel re Continued absence of the ICD-10 G93.3 terms from the ICD-11 Beta drafting platform

Post #324 Shortlink: http://wp.me/pKrrB-46A

Update at February 23, 2016: Since no proposals and rationales for the ICD-10 G93.3 legacy terms were released in September or December 2015, I contacted ICD’s Dr Robert Jakob, again. Dr Jakob told me on February 2, 2016 that “[ICD-11 Revsion is] still working on the extensive review and the conclusions.”

This report is an update to Post #322:

Continued absence of the ICD-10 G93.3 terms from the ICD-11 Beta drafting platform: Letter to key Revision personnel

Eight years into the revision process and stakeholders still don’t know how ICD Revision proposes to classify the ICD-10 G93.3 legacy terms for ICD-11.

In ICD-10, the (G93.3) Title term is Postviral fatigue syndrome; Benign myalgic encephalomyelitis is the Inclusion term under G93.3; Chronic fatigue syndrome is included in the Index only, and indexed to the G93.3 code [1].

By 2012, the public version of the ICD-11 Beta draft had the three terms listed as in the screenshot, below – still under the Diseases of the nervous system chapter, but with a change of relationship between the three terms.

At that point, Chronic fatigue syndrome was being proposed as a new ICD Title term; Benign myalgic encephalomyelitis* was specified as the Inclusion term (indicated in the draft by hover text over the asterisk which is not displaying in this screenshot).

Postviral fatigue syndrome, previously designated as Title code in ICD-10, was now located under Synonyms, in a list of alternative and historical terms imported from other terminology systems and health informatics sources, including two terms specific to Chapter 18: Symptoms, signs etc. of the U.S. ICD-10-CM clinical modification [4].

Beta12

Source: ICD-11 Beta drafting platform, public version, July 25, 2012.

 

In early 2013, ICD Revision removed the entry for Chronic fatigue syndrome and its associated terms from the public version of the Beta draft; from that point on, none of the terms were accessible in any Linearization.

(In the version of the Beta that the public sees, there are no holding pens viewable for categories “Needing a decision to be made” and no tab for “Category Notes and Decisions” which might indicate the rationale for the temporary or permanent absence of a category from the draft.)

Although a Change History function was incorporated into the public Beta in March, no Change History is available for these terms. The Topic Advisory Group (TAG) for Neurology has published no progress reports on emerging proposals for scrutiny and discussion.

So for over 2 years, now, stakeholders have been unable to monitor evolving proposals for the classification of these G93.3 legacy entities within ICD-11. The continued absence of these terms hinders submission of comments and suggestions on proposed chapter location(s), parent classes, hierarchies, inclusions, exclusions, definitions or other Content Model descriptive text.

 

Request for release of information on current status of proposals

On June 8, I sent a letter to Bedirhan Üstün (WHO/ICD Revision Coordinator), Cc’d to key ICD Revision personnel and the recently assembled ICD Revision Project Management Team, requesting an update on the status of proposals for these terms and their restoration to the draft [5]. Read letter here

On Friday, June 19, Anneke Schmider (WHO Technical Officer, ICD Revision Project Manager) facilitated a conference call with myself and Dr Robert Jakob (WHO ICD classifications, ICD Revision Steering Group) in which Dr Jakob responded to my letter, having obtained a progress report from TAG Neurology.

NB: It was not the purpose of this discussion to advance my own views on how these terms should be represented within ICD-11 but to elicit clarifications on the current status of proposals.

 

Summary of main points from our discussion:

TAG Neurology retains responsibility for these three terms.

None of the sub-working groups that sit under TAG Neurology has specific responsibility for these terms.

TAG Neurology is still reviewing the literature and has yet to reach consensus about where to classify these terms within ICD-11.

Dr Jakob says he can be “crystal clear” that there is no proposal to classify the ICD-10 G93.3 legacy terms under the Mental and behavioural disorders chapter.

JakobJune155

The ICD-11 principle of multiple parenting was discussed in general terms: multiple parenting allows the same disease to be expressed in two (or more) places in the ICD-11 linearizations. A disease or disorder category will be located under a primary parent class within one chapter but may also be searchable under a secondary (or tertiary) parent within another chapter, whilst retaining the code assigned in the primary location. (See ICD-11 Multiple parenting Slides 42-48)

Because TAG Neurology is still working towards consensus, Dr Jakob would not be drawn on the following:

whether relocating one or more of these terms from the Diseases of the nervous system to an alternative chapter(s) was under consideration;

whether retaining one or more of these terms within the Diseases of the nervous system chapter but secondary parenting under an alternative chapter(s) was under consideration;

what existing parent classes were being considered for locating these terms under;

whether the creation of any new parent classes was being considered for these terms;

whether any changes in the relationship between the three terms, as they had stood in the Beta draft in early 2013, have already been agreed or remain under consideration (ie any changes to which of the terms are identified as ICD Title terms, which are specified as Inclusion terms and which are listed as Synonyms).

which of the terms are proposed to be assigned a Definition and other Content Model descriptive text and where definition(s) would be sourced from.

It remains unclarified, therefore, whether ICD-11 intends to define CFS discretely from BME. Also unclarified: whether exclusions for these terms are proposed to be inserted under categories such as Bodily distress disorder; Fatigue [previously Malaise and fatigue in ICD-10]; and a proposed new Diseases of the nervous system parent term, Functional clinical forms of the nervous system (a proposal that TAG Mental Health opposes).

I have already submitted requests via the Proposal Mechanism that PVFS, BME and CFS are inserted under Exclusions to Bodily distress disorder, and Fatigue.

 

With regard to a date by which we might anticipate proposals being released:

The Beta draft was frozen on May 31, 2015. The Beta Comment facility is open and stakeholders can register to comment on the draft or submit formal proposals for changes and enhancements to proposals via the Proposals Mechanism. Another frozen release is expected in August. (But while TAG Neurology’s proposals remain absent from the Beta and unpublished elsewhere, stakeholders are in no position to comment on the TAG proposals or submit suggestions for modifications to TAG proposals.)

Dr Jakob says that in September 2015, ICD Revision plans to post various materials relating to the development process on the WHO/ICD website for public scrutiny, this to possibly include rationales, and documents relating to the abridged Primary Care version of ICD-11.

If TAG Neurology’s proposals for the G93.3 legacy terms are not ready for September release, then Dr Jakob projected their release towards the end of December 2015.

The target date for presentation of ICD-11 for World Health Assembly (WHA) approval is currently proposed for May 2018. There would be a period for public review and comment prior to presentation for adoption.

I will update on the status of proposals for these terms as soon as further information becomes available.

It is regrettable that stakeholders are little better informed than they were two years ago.

 

Bodily stress syndrome (S3DWG); Bodily stress syndrome (PCCG)

My longstanding concerns regarding the proposals of the WHO Working Group on Somatic Distress and Dissociative Disorders (S3DWG) for the revision of the ICD-10 Somatoform disorders and the alternative proposals of the ICD-11 Primary Care Consultation Group (PCCG) were beyond the scope of my letter to Dr Üstün and my discussions with Dr Jakob in response to that letter.

However, I advised Dr Jakob that my concerns around proposals for the S3DWG’s “Bodily distress disorder” and the Primary Care Consultation Group’s “Bodily stress syndrome” have been discussed with ICD Revision’s, Dr Geoffrey Reed, and in formal submissions via the Proposals Mechanism and Beta Comment facility for the consideration of TAG Mental Health [6][7].

 

References and related posts

1 ICD-10 Version: 2015 Chapter VI Diseases of the nervous system, G93.3

2 ICD-11 Beta drafting platform (Public version)

Frozen release at May 31, 2015

3 ICD-11 Beta Proposal Mechanism (Registration required for access)

4 Briefing paper on ICD-11 and PVFS, ME and CFS: Part 2, Dx Revision Watch

5 Continued absence of the ICD-10 G93.3 terms from the ICD-11 Beta drafting platform: Letter to key Revision personnel, Dx Revision Watch

6 Personal correspondence; ICD-11 Beta Proposal Mechanism.

7 Comment submitted to ICD-11 Topic Advisory Group for Mental Health re: Bodily distress disorder, Suzy Chapman

 

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Continued absence of the ICD-10 G93.3 terms from the ICD-11 Beta drafting platform: Letter to key Revision personnel

Post #322 Shortlink: http://wp.me/pKrrB-45z

Update: June 12, 2015: This situation is now being looked into by a member of the recently assembled ICD-11 Project Management team.

As previously posted:

Although the development process for ICD-11 has been in progress for eight years, it’s still not known how ICD Revision proposes to classify the ICD-10 G93.3 legacy terms.

On June 8, I sent a letter, via email, to WHO/ICD Revision, requesting a prompt resolution to this situation:

For the attention of Bedirhan Üstün (WHO/ICD Revision Coordinator, Project Management Team)

CC:

Dr Margaret Chan (Director-General, WHO)
Robert Jakob (Medical Officer, WHO ICD classifications)
Christopher Chute (Chair, ICD-11 Revision Steering Group)
Tarun Dua (lead WHO Secretariat for Topic Advisory Group for Neurology)
Raad Shakir (Chair, Topic Advisory Group for Neurology)
Marjorie S. Greenberg (ex-officio NCHS, WHO-FIC, ICD-11 Revision Steering Group member, team member external assessors for ICD revision process)
Anneke Schmider (WHO Technical Officer, ICD Revision Project Manager)
J Ties Boerma (ICD Revision Project Management team)
Ségolène Aymé (founder Orphanet, chair of ICD-11 Topic Advisory Group for Rare Diseases)
Stefanie Weber (DIMDI German Institute of Medical Documentation and Information, WHO-FIC)


Re: Continued absence of the ICD-10 G93.3 legacy entities from the public version of the Beta drafting platform


Monday, June 8, 2015

Dear Dr Üstün,

At the end of May, a frozen release was posted for the ICD-11 Beta draft.

I remain extremely concerned that there are still no entries in the public Beta, within any linearization, for the three ICD-10 G93.3 legacy entities:

Postviral fatigue syndrome
Benign myalgic encephalomyelitis
Chronic fatigue syndrome

As you are aware, these three entities (plus a dozen or so synonym terms) were removed without explanation from the Diseases of the nervous system chapter of the public version of the Beta draft, in early 2013.

Consequently, for over 2 years, stakeholders throughout the world have been unable to view evolving proposals for the classification of these entities within ICD-11 or to scrutinise proposed chapter location, proposed hierarchies, proposed Definitions and other Content Model parameters.

It is very difficult to monitor, make comments or suggestions where terms are not represented within the draft.

A request submitted by me, in February, via the Proposal Mechanism, to restore these entities to the public Beta has produced no response.

While these three entities remain absent from the Beta draft, stakeholders are effectively disenfranchised from participating in the revision process.

Since the start of the revision process, in 2007, no progress reports, editorials or journal papers have been published on behalf of TAG Neurology discussing the work group’s deliberations for these specific entities.

Since early 2013, when the three entities were removed from the public Beta, there has been no information available, at all.

I am aware that in March 2014, enquiries had been made by English and Scottish Health Directorates and that WHO was jointly approached by several UK registered ME/CFS patient organizations and English parliamentarians. The WHO’s response, at that point, was that proposals for the classification of these terms was unresolved and that more time and more input from the work groups was required [1].

A year later, the need for clarification for current proposals remains unmet.

Given the level of concern amongst stakeholders, globally, would you please look into this matter?

Could you please expedite the restoring of these terms to the Beta draft, with a Change History, in order that the ICD-11 development process can be inclusive of the thousands of clinicians, researchers, allied health professionals, advocacy organizations and patients with a stakeholder interest in the classification of these terms.

If it is not possible to restore terms to the Beta while a freeze is in operation, could TAG Neurology be instructed to issue an immediate statement of intention for these terms, in the interim?

Many thanks in anticipation of a swift resolution.

Sincerely,

Suzy Chapman

1 Correspondence, Scottish Health Directorate and WHO, March 2014, obtained under FOI.

Background to this letter:

In ICD-10 Version 2015:

Postviral fatigue syndrome is coded in Chapter VI: Diseases of the nervous system (the Neurology chapter), at code G93.3, under parent class G93 Other disorders of brain (view here).

Benign myalgic encephalomyelitis is the inclusion term to Postviral fatigue syndrome and assigned the G93.3 code.

Chronic fatigue syndrome is not included in ICD-10 Volume 1: The Tabular List but is indexed to G93.3 in ICD-10: Volume 3: The Alphabetical Index.

(The orange symbol denotes an Index term)

ICD102015

Proposals for ICD-11

In May 2010, a change to the hierarchical relationship between the three terms had been proposed. Whereas Postviral fatigue syndrome had been the Title category term for ICD-10, Chronic fatigue syndrome was proposed as the Title category term for ICD-11.

As part of a substantive reorganization of the Neurology chapter, the parent class, G93 Other disorders of brain (under which the ICD-10 categories G93.0 thru G93.9 were located), is proposed to be retired for ICD-11.

This has meant that the terms that sat under the G93 parent class for ICD-10 would need to be relocated under alternative parent classes for ICD-11 or have new parent classes created for them.

In July 2012, the public version of the ICD-11 Beta drafting platform had stood as in my screenshot, below.

It’s not evident in my screenshot, but the asterisk at the end of Benign myalgic encephalomyelitis displayed a hover text denoting its specification as the Inclusion term to ICD Title term, Chronic fatigue syndrome.

Also not evident in this cropped screenshot is the listing of Postviral fatigue syndrome under Synonyms.

At this point, around 14 historical or alternative terms were listed under Synonyms. These additional uncoded for terms, which had included the ICD-10-CM R53.82 terms, chronic fatigue, unspecified and chronic fatigue syndrome nos, had been scraped from other classification and EMR systems as part of the Beta drafting process :

July2512

Source: ICD-11 Beta drafting platform, July 25, 2012.

In November 2012, ICD Revision inserted a scrappy Definition for Chronic fatigue syndrome (this replaced an earlier draft ICD-11 Beta Definition). I have sourced this draft Definition to an internal ICD Revision/Stanford Protege document (line 1983):

Chronic fatigue syndrome is characterized by extreme chronic fatigue of an indeterminate cause, which is disabling andt [sic] does not improve with rest and that is exacerbated by physical or mental activity.

The “Selected Cause” sub linearization was later removed from the public Beta draft and some of the terms that had been listed under it were restored to the Neurology chapter and to other chapters. But Title term, Chronic fatigue syndrome, its Inclusion term and its list of Synonyms were not restored to any chapter.

Since February 2013, no listing can be found in any chapter of the public version of the Beta draft, under any linearization, for any of the terms, Postviral fatigue syndrome, Benign myalgic encephalomyelitis or Chronic fatigue syndrome, either as uniquely coded for ICD Title terms, or as Inclusion terms or as Synonyms to Title terms, or listed in the ICD-11 Beta Index.

So currently, there is no information within the Beta draft for proposals for these three terms.

The public version of the Beta drafting platform displays no editing “Change History” or “Category Notes” for these terms and their continued absence from the draft is hampering professional and public stakeholder scrutiny, discourse and comment.

This is not acceptable for any disease category, given that ICD Revision is promoted by WHO’s, Bedirhan Üstün, as an open and transparent process that is inclusive of all classes of stakeholder. The recent external review of the revision process has called for greater transparency [1].

Since June 2013, my repeated requests for an explanation for the absence of these three terms from the Beta draft and for ICD Revision’s intentions for these terms were ignored by ICD Revision until July 2014, when a response was forthcoming from ICD Revision’s, Dr Geoffrey Reed.

It is understood that Annette Brooke MP also received a response, in July 2014, from WHO’s, Dr Robert Jakob, in respect of the joint organizations’ letter of March 18, for which Ms Brooke had been a co-signatory [2].

What clarifications have been given?

WHO and ICD Revision’s, Dr Geoffrey Reed (Senior Project Officer, Revision of Mental and behavioural disorders), have said that there has been no proposal and no intention to include ME or other conditions such as fibromyalgia or chronic fatigue syndrome in the classification of mental disorders.

Dr Reed has said that the easiest way to make this absolutely clear will be through the use of exclusion terms. However, he has said that he would be unable to request that exclusion terms are added to relevant Mental and behavioural disorders categories (e.g. Bodily distress disorder) until the conditions that are being excluded exist in the classification; that at such time, he would be happy to do so.

In August 2014, I submitted two FOI requests, one to the Scottish Health Directorate, one to the English Department of Health. The latter was not deemed specific enough in terms of named health agencies for a response to be generated, but I did receive information regarding the former.

Extract from FOI Response: September 24, 2014: FOI request fulfilled by (SCOTLAND) ACT 2002 (FOISA),

Information held covering the time period indicated relates to an email exchange on 11 and 12 March 2014 as part of a request for advice in answering Ministerial correspondence.

On 11 March the World Health Organisation WHO were asked “I would be very grateful for your help in confirming the status of an element within the WHO’s ICD 11 regarding ME/CFS. On 25th February in the UK parliament, the Under-Secretary of State for Health informed the UK parliament that the WHO had publicy stated that there was no proposal  to reclassify ME/CFS in ICD-11…I would be very grateful if you can confirm that this is the case and if possible, provide a web link to the original wording so I can include this within the correspondence I am preparing”.

The WHO responded on 12 March; “The question regarding MS/CFS [sic] and ICD-11 has been asked recently by several different parties. At this point in time, the ICD-11 is still under development, and to handle this classification issue we will need more time and input from the relevant working groups. It would be premature to make any statement on the subject below.

The general information on ICD Revision can be accessed here: http://www.who.int/classifications/icd/revision/. The current state of development of ICD-11 (draft) can be viewed here (and comments can be made, after self registration): http://www.who.int/classifications/icd11 ”.

A further email on 12 March to the WHO asked; “It would be fair to say then …that work will continue on the draft with an expected publication in 2015?”.

WHO responded on 12 March; “Work on the draft will continue until presentation at the World Health Assembly in 2017**. Before, reviews and field testing will provide input to a version that is available for commenting, as much as possible and proposals can be submitted online* with the mechanisms provided already.”

*Since the three terms are currently not accounted for within the Beta draft this impedes the submission of comments.

**Rescheduled in May, this year; the proposed target for presentation for WHA approval is currently May 2018.

This is all that has been disclosed by WHO/ICD Revision in respect of current proposals for the classification of the three ICD-10 G93.3 terms, despite the fact that ICD-11 has now been under development for 8 years, and prior to the timeline extension in January 2014, the new edition had been scheduled for WHA approval and dissemination in 2015.

There remain 6 important questions to be answered by WHO/ICD Revision:

• under which chapter(s) are PVFS, BME and CFS proposed to be located?
• under which parent classes?
• what hierarchies are proposed, in terms of coded for Title terms, Inclusions, Synonyms?
• which of the terms are to be assigned definitions?
• where will definitions be sourced from?
• when will the terms be restored to the draft to enable scrutiny and comment?

Important caveats: The public Beta platform is not a static document, it is a work in progress, subject to daily editing and revision, to field test evaluation and to approval by the RSG and WHO classification experts. Not all new proposals may survive the ICD-11 field tests. Chapter numbering, codes and “sorting codes” currently assigned to ICD categories are not stable and will change as chapters and parent/child hierarchies are reorganized. The public version of the Beta is incomplete; not all “Content Model” parameters display or are populated; the draft may contain errors and omissions.

References and related posts

1 ICD-11 Revision releases External review and Response: shifts projected WHA adoption to 2018

2 Joint Open letter to WHO/ICD Revision over classification of absent G93.3 terms for ICD-11 Beta draft

3 ICD-11 Revision releases External review and Response: shifts projected WHA adoption to 2018

4 Briefing paper on ICD-11 and PVFS, ME and CFS: Part 1

5 Briefing paper on ICD-11 and PVFS, ME and CFS: Part 2

6 Summary of responses from WHO re: Bodily distress disorder, Bodily stress syndrome, Bodily Distress Syndrome

ICD-11 Mental Health TAG opposes inclusion of “Functional clinical forms of the nervous system” under neurological conditions

Post #318 Shortlink: http://wp.me/pKrrB-42P

Update: In September, a series of ICD-11 Symposia were held at the World Psychiatric Association XVI World Congress, in Madrid. These included Symposium Code SY469: Proposals and evidence for the ICD-11 classification of dissociative disorders, the abstract for which can be found here (pages 354-355).

Update: For those registered for enhanced access to the public version of the ICD-11 Beta drafting platform, there are some recent proposals on behalf of Mental Health TAG for the Dissociative disorders block, here.

 

As previously posted:

In my September post, Briefing paper on ICD-11 and PVFS, ME and CFS: Part 2, I reported on a proposal by the ICD-11 Topic Advisory Group (TAG) for Neurology for the inclusion of a disorder group termed, “Functional clinical forms of the nervous system,” under Neurological conditions.

Under this new parent class, it has been proposed to locate a list of “functional disorders” (Functional paralysis or weakness; Functional sensory disorder; Functional movement disorder; Functional gait disorder; Functional cognitive disorder, Functional visual loss etc.).

In ICD-10, these conditions are accommodated under the Chapter V F44 Dissociative [conversion] disorders section.

In DSM-5, they are classified under “Conversion Disorder (Functional Neurological Symptom Disorder),” which is one of several categories that sit under the DSM-5 “Somatic Symptom and Related Disorders” section. They are cross-walked to ICD-10-CM’s F44.4 to F44.7 codes, depending on the symptom type.

The rationale for this proposed new parent class is set out in this recent paper by Stone et al:

Functional disorders in the Neurology section of ICD-11: A landmark opportunity

Jon Stone, FRCP, Mark Hallett, MD, Alan Carson, FRCPsych, Donna Bergen, MD and Raad Shakir, FRCP*

Neurology December 9, 2014 vol. 83 no. 24 2299-2301

doi: 10.1212/WNL.0000000000001063

Full free text

Full free PDF

*Raad Shakir chairs the Topic Advisory Group for Neurology

See also (full paper behind paywall):

Functional neurological disorders: The neurological assessment as treatment. Stone J. Neurophysiol Clin. 2014 Oct;44(4):363-73 Abstract: http://www.ncbi.nlm.nih.gov/pubmed/25306077

 

Opposition from Mental Health TAG

If you are registered for increased access to the public version of the Beta drafting platform, you can read the response from Mental Health TAG, here.

If you are not registered, see below:

Proposal for Deletion of the Entity

Functional clinical forms of the nervous system

Proposal Status: Submitted

Definition

Definition does not exist for this content

Rationale

This grouping should be deleted.

These are by definition not neurological conditions, as indicated by the phrase included in the definitions provided: ‘in which there is positive evidence of either internal inconsistency or incongruity with other neurological disorders’. If there is no evidence of a neurological mechanism or etiology, the rationale for including these in the classification of neurological disorders is unclear to say the least.

In contrast, these have always been viewed as mental disorders (from the days of Sigmund Freud), and there is no evidence about their etiology or mechanism that is inconsistent with that formulation.

Prior to ICD-10, these conditions were conceptualized as Conversion Disorders. This terms is considered obsolete because it refers to a psychodynamic mechanism that is theoretical and not ideally descriptive. ICD-10 offered a transitional title, calling them Dissociative [conversion] disorders.

For ICD-11, the proposals for Mental and Behavioural Disorders refer to these as Dissociative disorders, dropping the ‘Conversion’ part of the term. Dissociative disorders are defined descriptively, as ‘characterized by disruption or discontinuity in the normal integration of memories of the past, awareness of identity, immediate sensations, and control over bodily movements that are not better explained by another mental and behavioural disorder, are not due to the direct effects of a substance or medication, and are not due to a neurological condition, sleep-wake disorder, or other disorder or disease. This disruption or discontinuity may be complete, but is more commonly partial, and can vary from day to day or even from hour to hour.’ There is not basis for suggesting that this formulation is inconsistent with the phenomena proposed for inclusion here as ‘Functional clinical forms of the nervous system’.

The fact that neurologists may be asked to evaluate these conditions is not an adequate rationale for defining them as neurological disorders, nor are concerns about reimbursement policies that are unwisely based on divisions among specialists’ scope of practice based on ICD chapters.

The Mental Health TAG is aware that there is a vocal group of advocates for this terminology among neurologists. In fact, this terminology was included as alternate terminology in DSM-5. However, in DSM-5, these are still very clearly classified as Mental disorders.

Similarly, these terms can be added as inclusion terms to the equivalent categories in the Mental and behavioural disorders chapter.

In spite of its popularity among at least some neurologists, this terminology is currently viewed in psychiatry as obsolete, and based on a mind-body split (division between ‘organic’ and ‘non-organic’) we are elsewhere attempting to remove from the ICD-11. The implied contrast is between a ‘real’ (medical) disorder and a ‘functional’ (psychiatric) disorder.

A further problem with this terminology is its inconsistency with WHO’s official policy use of terminology related to ‘functioning’ (function, functional), as defined in the ICF.

In some instances of the use of the term ‘functional’ in other parts of proposals for ICD-11, it is not clear that the proposals use the term ‘functional’ in this same sense, or if they mean something close to ‘idiopathic’. However, it is quite clear that what is meant in this group of proposals is ‘without neurological explanation or plausible or demonstrable etiology’.

However, this terminology is in any case problematic. In addition to requesting that this group of categories be deleted from the classification and instead integrated appropriately as inclusion terms in the chapter on Mental and Behavioural Disorders, the Mental Health TAG requests that the Classifications Team examine other uses of the term ‘functional’ in proposals for ICD-11 and consider either appropriate parenting in Mental and behavioural disorders or alternative terminology.

The Mental Health TAG also requests that this issue be revised by the Revision Steering Group (and or Small Executive Group) in order to arrive at an ICD-wide solution as efficiently as possible. The Mental Health TAG requests that this issue not simply be arbitrated by the same TAGs that have made these proposals.

–On behalf of Mental Health TAG

References

There are no references attached for this proposal item

Comments on this proposal

Comment

The Mental Health TAG also requests that this issue be revised by the Revision Steering Group (and or Small Executive Group) in order to arrive at an ICD-wide solution as efficiently as possible. The Mental Health TAG requests that this issue not simply be arbitrated by the same TAGs that have made these proposals.

–On behalf of the Mental Health TAG
Geoffrey Reed 2015-Jan-10 – 23:10

 

Comment

An alternative could be that this grouping could be retained but with appropriate primary parenting to Dissociative disorders in the Mental and behavioural disorders chapter.

Entities of ‘functional clinical forms’ have already been proposed to be added in the appropriate categories in Dissociative disorders. Most of them are included in Dissociative motor disorder, though several are included in Dissociative disorder of sensation. One is included in dissociative amnesia.

However, the name of these entries – i.e., functional disorders – remains an issue as described above, which should be resolved at the ICD-wide level.

Note that if the solution selected involved retaining these categories, perhaps renamed, but primary parenting them appropriately in Dissociative disorders, it will be more appropriate to move the secondary parented categories to the main Disease of the nervous system chapter rather than listing them in clinical forms.

–On behalf of the Mental Health TAG
Geoffrey Reed 2015-Jan-12 – 09:14 UTC

 

I will update if further comment is uploaded on behalf of the Mental Health TAG, the Neurology TAG, ICD-11 Revision Steering Group, the WHO classification experts etc.

 

Note for stakeholders with an interest in the ICD-10 G93.3 categories: There is currently no inclusion within any chapter of the ICD-11 Beta draft for a specific parent class for “Functional somatic syndromes,” or “Functional somatic disorders” or “interface disorders” under which, conceivably, those who consider CFS, ME, IBS, FM et al to be speciality driven manifestations of a similar underlying functional disorder might be keen to see these terms aggregated.

On July 24, 2014, ICD Revision’s Dr Geoffrey Reed stated there has been no proposal and no intention to include ME or other conditions such as fibromyalgia or chronic fatigue syndrome in the classification of mental disorders.

Briefing paper on ICD-11 and PVFS, ME and CFS: Part 2

Post #316 Shortlink: http://wp.me/pKrrB-41q

Update: With regard to a new parent class: Functional clinical forms of the nervous system proposed for inclusion within the ICD-11 Diseases of the nervous system (Neurology) chapter, see Stone et al paper:

Functional disorders in the Neurology section of ICD-11: A landmark opportunity

Jon Stone, FRCP, Mark Hallett, MD, Alan Carson, FRCPsych, Donna Bergen, MD and Raad Shakir, FRCP

Neurology December 9, 2014 vol. 83 no. 24 2299-2301

doi: 10.1212/WNL.0000000000001063

Full free text:

http://www.neurology.org/content/83/24/2299.long

Full free PDF:

http://www.neurology.org/content/83/24/2299.full.pdf+html

 

As previously posted:

Part two of a three part report on the status of ICD-11 proposals for the classification of the three ICD-10 entities:

G93.3 Postviral fatigue syndrome (coded under parent class G93 in Tabular List)

Benign myalgic encephalomyelitis (inclusion term to G93.3 in Tabular List)

Chronic fatigue syndrome (indexed to G93.3 in Volume 3: Alphabetical Index)

 

Part 1: Status of the ICD-11 development process published September 29, 2014

 

Part 2: Status of proposals for the classification of PVFS, BME, and CFS in the public version of the ICD-11 Beta drafting platform

Seven years into the development process and it’s still not known how ICD-11 intends to classify the three G93.3 terms.

Sub working groups were formed under TAG Neurology with responsibility for the restructured disease and disorder blocks proposed for ICD-11’s Diseases of the nervous system chapter.

It hasn’t been established which of the various sub working groups has responsibility for making recommendations for the revision of the G93.3 terms or who the members of the subgroup(s) and its external advisers are.

Neurology Topic Advisory Group (TAG) sub working groups:

Neurology TAG sub working groups

Source: Slide #16: Summary of progress, Neurology Advisory Group, Raad Shakir (Chair): http://www.hc2013.bcs.org/presentations/s1d_thu_1530_Shakir_amended.ppt

 

No journal papers, editorials, presentations or public domain progress reports have been published, to date, on behalf of TAG Neurology that discuss emerging proposals or intentions for the classification of the three G93.3 terms for ICD-11.

The public version of the Beta drafting platform displays no editing change histories or category notes. Until the three terms have been restored to the Beta draft the public is reliant on what information WHO/ICD Revision chooses to disclose, which thus far, has been minimal.

Currently, there is no information within the Beta draft for proposals for these three terms. The continued absence of these terms from the draft (now missing for over 18 months) is hampering professional and public stakeholder scrutiny, discourse and comment.

This is not acceptable for any disease category given that ICD Revision is being promoted by WHO’s, Bedirhan Üstün, as an open and transparent process and inclusive of stakeholders.

This next section summarizes the most significant changes since May 2010 for several iterations of the Neurology chapter, during the Alpha and Beta drafting phases, as displayed in the public version of the draft.

 

Tracking the progression of the G93.3 terms through the Alpha and Beta drafting stages

In May 2010: the ICD-10 G93 legacy parent class: Other disorders of brain was retired and a change in hierarchy for class Postviral fatigue syndrome recorded. See Notes Tree screenshot [12].

A Definition was inserted for Chronic fatigue syndrome. See Change history screenshot [13].

Chronic fatigue syndrome replaced Postviral fatigue syndrome as the new ICD Title term and now sat directly under parent class: Other disorders of the nervous system.

Benign myalgic encephalomyelitis was specified as an Inclusion term under Synonyms to new ICD Title term: Chronic fatigue syndrome. See Alpha draft screenshot [14].

Postviral fatigue syndrome was at that point unaccounted for in the Alpha draft.

By July 2012: 13 additional terms were now listed under Synonyms, including Postviral fatigue syndrome, and two terms imported from the yet to be implemented, ICD-10-CM (the ICD-10-CM Chapter 18 R53.82 codes: chronic fatigue syndrome nos and chronic fatigue, unspecified).

The Definition field was now blanked.

At this point, ICD Title term: Chronic fatigue syndrome was no longer displaying as a child category directly under parent class: Other disorders of the nervous system.

The listing for Chronic fatigue syndrome now appeared under a new “Selected Cause” subset, which displayed as a sub linearization within the Foundation Component. The purpose of this subset, which aggregated many terms from Neurology and other chapters, was not evident from the Beta draft.

By November 2012: ICD Revision had re-inserted a scrappy, revised Definition for Chronic fatigue syndrome. I have sourced this draft definition to an internal ICD Revision/Stanford Protege document (line 1983):

Chronic fatigue syndrome is characterized by extreme chronic fatigue of an indeterminate cause, which is disabling andt [sic] does not improve with rest and that is exacerbated by physical or mental activity.

 

Below is a screenshot from the Beta draft taken in July 2012, before a Definition for Title term, Chronic fatigue syndrome had been re-inserted.

(It isn’t evident in the screenshot, but the asterisk at the end of Benign myalgic encephalomyelitis displayed a hover text denoting its specification as the Inclusion term to ICD Title term, Chronic fatigue syndrome. Also not evident in this cropped screenshot is the listing of Postviral fatigue syndrome under Synonyms.)

July2512

Source: ICD-11 Beta drafting platform, July 25, 2012.

This “Selected Cause” sub linearization was later removed from the public Beta draft and some of the terms that had been listed under it were restored to the Neurology chapter and to other chapters. But ICD Title term, Chronic fatigue syndrome, its Inclusion term and list of Synonyms were not restored to any chapter.

Since February 2013: no listing can be found in any chapter of the public version of the Beta draft, under any linearization, for any of the terms, Postviral fatigue syndrome, Benign myalgic encephalomyelitis or Chronic fatigue syndrome, as uniquely coded ICD Title terms, or as Inclusion terms or Synonyms to Title terms, or in the ICD-11 Beta Index.

Since June 2013: My repeated requests for an explanation for the absence of these three terms from the Beta draft and for ICD Revision’s intentions for these terms were ignored by ICD Revision until July 2014, when a response was forthcoming from ICD Revision’s, Dr Geoffrey Reed.

(It is understood that Annette Brooke MP also received a response, in July, from WHO’s, Dr Robert Jakob, in respect of the joint organizations’ letter of March 18, for which Ms Brooke had been a co-signatory.)

 

What clarifications have been given?

Feb 12, 2014: An unidentified admin for the @WHO Twitter account replied to a member of the public: “Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11.” A similar affirmation was tweeted by Gregory Hartl, head of public relations/social media, WHO.

 

July 24, 2014: Geoffrey Reed PhD (Senior Project Manager for revision of Mental and behavioural disorders) replied to Suzy Chapman, by email:

Dr Reed stated inter alia that the placement of ME and related conditions within the broader classification is still unresolved.

That he had no influence or control over this process; his authority being limited to coordinating recommendations related to conditions that should or should not be placed in the chapter on Mental and behavioural disorders.

That there has been no proposal and no intention to include ME or other conditions such as fibromyalgia* or chronic fatigue syndrome in the classification of mental disorders.

That the easiest way to make this absolutely clear will be through the use of exclusion terms. However, he would be unable to ask that exclusion terms are added to relevant Mental and behavioural disorders categories (e.g. Bodily Distress Disorder) until the conditions that are being excluded exist in the classification. That at such time, he would be happy to do that.

That since his purview does not extend to the section on classification of Diseases of the nervous system or other areas outside the Mental and behavioural disorders chapter, he was unable to provide any information related to how these conditions will be classified in other chapters.

That he was unable to comment about the management of correspondence by other TAG groups and signposted me to Dr Robert Jakob [the senior classification expert who had been copied into the joint organizations’ letter to WHO/ICD Revision, in March] whose role relates to the overall coordination of the classification.

 

*Fibromyalgia remains classified under ICD-11 Beta draft public version chapter “Diseases of the musculoskeletal system and connective tissue” under parent: Certain specified soft tissue disorders, not elsewhere classified.

Irritable bowel syndrome remains classified under ICD-11 Beta draft public version chapter “Diseases of the digestive system” under: Functional gastrointestinal disorders > Irritable bowel syndrome and certain specified functional bowel disorders.

 

In August, I submitted two FOI requests, one to the Scottish Health Directorate, one to the English Department of Health. The latter was not deemed specific enough in terms of named health agencies for a response to be generated and will require resubmission.

September 24, 2014: FOI request fulfilled by (SCOTLAND) ACT 2002 (FOISA), received from David Cline, Unit Head, Strategic Planning and Clinical Priorities Team, by email: 

The Quality Unit: Health and Social Care Directorates
Planning & Quality Division

[Addresses redacted]

Your ref:  FoI/14/01460

24 September 2014

REQUEST UNDER THE FREEDOM OF INFORMATION (SCOTLAND) ACT 2002 (FOISA)

Thank you for your request dated 27 August 2014 under the Freedom of Information (Scotland) Act 2002 (FOISA)…

 

Your request

Under the Freedom of Information (Scotland) Act 2002, please provide the following.

Please send me copies of all correspondence, emails, letters, minutes relating to:

Enquiries made by Scottish Health Directorate to World Health Organization (WHO), 20 Av Appia, CH-1211, Geneva, in respect of:

Classification of the three ICD-10 (International Classification of Diseases 10th edition) G93.3 coded disease terms in the forthcoming revision of ICD-10, to be known as ICD-11:

Postviral fatigue syndrome (Post viral fatigue syndrome; PVFS)

Benign myalgic encephalomyelitis (myalgic encephalomyelitis; myalgic encephalitis; ME);

Chronic fatigue syndrome (CFS; CFS/ME, ME/CFS)

During the period:

1] January 1, 2013 – December 31, 2013

2] January 1, 2014 – July 31, 2014

I also request copies of responses received from WHO in reply to enquiries made by Scottish Health Directorate during these periods in respect of the above ICD disease categories.

 

Response to your  request

Information held covering the time period indicated relates to an email exchange on 11 and 12 March 2014 as part of a request for advice in answering Ministerial correspondence.

On 11 March the World Health Organisation WHO were asked “I would be very grateful for your help in confirming the status of an element within the WHO’s ICD 11 regarding ME/CFS. On 25th February in the UK parliament, the Under-Secretary of State for Health informed the UK parliament that the WHO had publicy stated that there was no proposal  to reclassify ME/CFS in ICD-11…I would be very grateful if you can confirm that this is the case and if possible, provide a web link to the original wording so I can include this within the correspondence I am preparing”.

The WHO responded on 12 March; “The question regarding MS/CFS [sic] and ICD-11 has been asked recently by several different parties. At this point in time, the ICD-11 is still under development, and to handle this classification issue we will need more time and input from the relevant working groups. It would be premature to make any statement on the subject below.

The general information on ICD Revision can be accessed here: http://www.who.int/classifications/icd/revision/. The current state of development of ICD-11 (draft) can be viewed here (and comments can be made, after self registration): http://www.who.int/classifications/icd11 ”.

A further email on 12 March to the WHO asked; “It would be fair to say then …that work will continue on the draft with an expected publication in 2015?”.

WHO responded on 12 March; “Work on the draft will continue until presentation at the World Health Assembly in 2017. Before, reviews and field testing will provide input to a version that is available for commenting, as much as possible and proposals can be submitted online* with the mechanisms provided already.”

*Since the three terms are currently not accounted for within the Beta draft this impedes the submission of comments.

 

This is the sum total of what has been disclosed by WHO/ICD Revision in respect of current proposals for the classification of the three ICD-10 G93.3 terms, despite the fact that ICD-11 has now been under development for 7 years, and prior to the timeline extension in January 2014, the new edition had been scheduled for WHA approval and dissemination in 2015.

 

What might the working group potentially be considering? 

  • The terms may have been removed from the draft in order to mitigate controversy over a proposed change of chapter location, change of parent class, reorganization of the hierarchy, or over the wording of Definition(s). (Whether a term is listed as a coded Title term, or is specified as an Inclusion term to a coded term or listed under Synonyms to a coded term, dictates which of the terms is assigned a Definition. If, for example, CFS and [B]ME were both coded as discrete ICD Title terms, both terms will require the assigning of Definitions and other Content Model descriptors.)
  • TAG Neurology may be proposing to retain all three terms under the Neurology chapter, under an existing parent class that is still under reorganization, and has taken the three terms out of the linearizations in the meantime, or is proposing to locate one or more of the terms under a new parent class for which a name and location has yet to be agreed.
  • TAG Neurology may be proposing to locate one or more of these terms under more than one chapter, for example, under the Neurology chapter but dual parented under the Symptoms and signs chapter. Or multi parented and viewable under a multisystem linearization, if the potential for a multisystem linearization remains under discussion.
  • TAG Neurology may be proposing to retire one or more of these three terms (despite earlier assurances by senior WHO classification experts) but I think this unlikely. ICD-11 will be integrable with SNOMED CT, which includes all three terms, albeit with ME and BME listed as synonyms to coded CFS, with PVFS assigned a discrete SNOMED CT code.
  • Given the extension to the timeline, TAG Neurology may be reluctant to make decisions at this point because it has been made aware of the HHS contract with U.S. Institute of Medicine (IOM) to develop “evidence-based clinical diagnostic criteria for ME/CFS” and to “recommend whether new terminology for ME/CFS should be adopted.” Any new resulting criteria or terminology might potentially be used to inform ICD-11 decisions.

Other possibilities might be listing one or more of these terms under parent class, Certain specified disorders of the nervous system or under Symptoms, signs and clinical findings involving the nervous system, which is dual parented under both the Neurology chapter and the Symptoms and signs chapter.

All currently listed parent and child categories within the Neurology chapter can be viewed here:

Click on the small grey arrows next to Beta draft categories to display their parent, child and grandchildren categories, as drop down hierarchies.

Linearization display button1Select this coloured button to display symbols and hover text indicating which linearization(s) a selected term is listed under.

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1296093776

 

There is a new parent class proposed for the ICD-11 Neurology chapter called, Functional clinical forms of the nervous system, which Dr Jon Stone has been working on [15] [17].

Under this new Neurology chapter parent class, it is proposed to relocate or dual locate a list of “functional disorders” (Functional paralysis or weakness; Functional sensory disorder; Functional movement disorder; Functional gait disorder; Functional cognitive disorder etc.) which in ICD-10 are classified under the Chapter V Dissociative [conversion] disorders section.

The rationale for this proposed chapter shift for Conversion disorders/functional disorders is beyond the scope of this briefing paper.

In a 2013 editorial, Prof Raad Shakir (Chair, TAG Neurology) briefly discusses the proposed reorganization of what he calls the “rag bag of diverse and disparate diseases” that is parent class, Other disorders of the nervous system [16].

He writes, “In addition, there will also be a section on Functional disorders of the nervous system, reflecting the growing diagnostic importance of such syndromes.” 

It’s not clear whether this reference, in 2013, to the inclusion of a new section for “Functional disorders of the nervous system” within the Neurology chapter relates to the relocation or dual location of those “functional disorders” currently classified under Dissociative [conversion] disorders within ICD-10 Chapter V, or whether Prof Shakir was referring to potential inclusion within the Neurology chapter of a section for “Functional somatic syndromes.” But I consider the former more likely.

There is currently no inclusion within any chapter for a specific parent class for “Functional somatic syndromes,” or “Functional somatic disorders” or “interface disorders” under which, conceivably, those who consider CFS, ME, IBS and FM to be “speciality driven” manifestations of a similar underlying functional disorder might be keen to see these terms aggregated.

I shall return to the subject of “interface disorders” in Part 3.

 

There remain 6 important questions to be answered:

• under which chapter(s) are PVFS, BME and CFS proposed to be located?
• under which parent classes?
• what hierarchies are proposed, in terms of coded Title terms, Inclusions, Synonyms?
• which of the terms are to be assigned definitions?
• where will definitions be sourced from?
• when will the terms be restored to the draft to enable scrutiny and comment?

 

Extract, ICD-11 document Known Concerns and Criticisms:

“It may be true that some advocacy groups may give inputs in line with their vested interests or object to the listings in ICD-11 Beta. When such public controversy occurs, it is better to have it in an open and transparent discussion…”

Having obscured these terms from the Beta drafting platform eighteen months ago, with no explanation, ICD Revision Steering Group and TAG Neurology, which are both accountable to WHO, have disenfranchised professional and advocacy stakeholders from scrutiny of, and participation in what is being touted as an open and transparent process.

For Part 1 of this briefing document: Part 1: Status of the ICD-11 development process

In Part 3, I shall be setting out what is currently known about the status of proposals for the revision of ICD-10’s Somatoform disorders for the core and primary care versions of ICD-11.

 

Important caveats: The public Beta platform is not a static document, it is a work in progress, subject to daily editing and revision, to field test evaluation and to approval by the RSG and WHO classification experts. Not all new proposals may survive the ICD-11 field tests. Chapter numbering, codes and “sorting codes” currently assigned to ICD categories are not stable and will change as chapters and parent/child hierarchies are reorganized. The public version of the Beta is incomplete; not all “Content Model” parameters display or are populated; the draft may contain errors and omissions.

 

References for Part 2

12 https://dxrevisionwatch.files.wordpress.com/2010/05/2icatnotegj92cfs.png

13 https://dxrevisionwatch.files.wordpress.com/2011/02/change-history-gj92-cfs.png

14 https://dxrevisionwatch.files.wordpress.com/2011/05/icd11-alpha1-17-05-11.png

15 http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f1614846095

16 Shakir R, Rajakulendran, S. The 11th Revision of the International Classification of Diseases (ICD) The Neurological Perspective JAMA Neurol. 2013;70(11):1353-1354. http://archneur.jamanetwork.com/article.aspx?articleid=1733323

17 Functional neurological disorders: The neurological assessment as treatment. Stone J. Neurophysiol Clin. 2014 Oct;44(4):363-73 http://www.ncbi.nlm.nih.gov/pubmed/25306077

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