Oral Response to Oral Question tabled by Annette Brooke MP, House of Commons, February 25, 2014

Post #298 Shortlink: http://wp.me/pKrrB-3Nm

Update on February 27, 2014:

To clarify: the replies by WHO Twitter admin of February 12 are still displaying but some viewers may need to adjust the page setting to “All” in order for replies to be visible, as the @WHO Twitter page now defaults to “No Replies” mode.

I stand by my view that responses to members of the public, via Twitter, which may be visible to some but not to others, is not an adequate substitute for the issuing of a formal statement clarifying the reason for the 12 month long absence of these three ICD-10 entities from the Beta drafting platform and ICD Revision’s intentions for their classification, or for restoring these terms to the Beta platform for public scrutiny.

Update on February 26, 2014:

WHO on Twitter appears to have deleted the three tweets to a member of the public. For the record, here is a screenshot from a forum post, dated February 12:

WHOtwitter12_02_14

Update on February 25, 2014:

In her Oral Answer to the Oral Question tabled by Annette Brook MP [House of Commons, February 25, 2014] Jane Ellison, Parliamentary Under-Secretary of State for Health, refers to a WHO public statement.

To the best of my knowledge, WHO has issued no recent public statement around its proposals for the classification of ME and CFS within ICD-11, other than what was stated in an unsigned tweet by an unnamed WHO admin to a member of the public, via WHO’s Twitter account, on February 12.

I have asked Jane Ellison MP, Parliamentary Under-Secretary of State for Health, for the source of the WHO public statement that informed the response given to Annette Brooke MP.

Since I am not a constituent, and Ms Ellison is not obliged to respond to my enquiry, I have also asked the Department of Health for clarification through a formal process for requesting information in relation to government departments and Ministers [Case ref: DE00000844965]. I will update when I have received their response (due within 18 working days of submission).

The tweet by WHO of February 12 does not state, “…there is no proposal to reclassify ME/CFS in ICD-11.”

It states only that there is no proposal to include ME/CFS as Mental and behavioural disorders in ICD-11.

It does not confirm an intention to retain PVFS, ME and CFS within Chapter 07; it does not deny any proposal for coding under dual parent classes within the same chapter or coding to dual parent classes under more than one chapter; nor does it provide any explanation for the year long absence of these three ICD-10 terms from the ICD-11 Beta draft.

It does not set out proposals for hierarchies, that is, which term(s) are proposed to be assigned ICD Title codes and given Definitions and other “Content Model” descriptors, and which are proposed to appear listed only as Inclusion terms or under Synonyms to ICD Title codes. It does not clarify the proposed content of Long or Short “Content Model” Definitions.

As a public statement of clarification it is neither adequate nor acceptable. I continue my quest for the issuing of a full clarification of current proposals for the G93.3 entities and for the restoration of these terms to the Beta draft.

Oral Response to Oral Question from Annette Brooke MP, House of Commons, February 25, 2014

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http://www.publications.parliament.uk/pa/cm201314/cmhansrd/cm140225/debtext/140225-0001.htm#14022547000005

Answer to Oral Question

ME/CFS

11.

Annette Brooke (Mid Dorset and North Poole) (LD):

What reports he has received on the possible reclassification of ME/CFS by the World Health Organisation.[902634]

The Parliamentary Under-Secretary of State for Health (Jane Ellison):

The World Health Organisation is currently developing the 11th version of the international classification of diseases, which it aims to publish in 2017. No discussions have taken place between the Department and the WHO on the reclassification of ME/CFS, but the WHO has publicly stated that there is no proposal to reclassify ME/CFS in ICD-11.

Annette Brooke:

I thank the Minister for her answer. Many people will be greatly relieved about that. As chair of the all-party group on myalgic encephalomyelitis, I receive many representations about GPs in this country still not necessarily recognising the condition. Will she look into that, and will she work with her counterparts in the DWP on the benefits side as well?

Jane Ellison:

I am aware that this is a very difficult, complex and emotive area. I have heard before the point that the hon. Lady makes about GPs. I am very happy to take up her points and discuss them with her.

Update on February 25, 2014:

In reply to the posting of a link on February 10, on Action for M.E.’s Facebook page, for Dx Revision Watch post: Update on classification of the ICD-10 G93.3 categories within the ICD-11 Beta draft published on February 8, 2014, Action for M.E. responded:

“Our view is that M.E./CFS is a physical neurological illness and we will challenge any attempt to wrongly classify it as a psychiatric or mental disorder. We have already discussed this issue with other charities with a view to collaborating in opposing any such move by the WHO. Our CEO has also raised the issue with the Chair of the All Party Parliamentary Group on M.E. with a view to encouraging political opposition to such a move.”

Update: 12 Point Skinny on ICD-11

Post #297 Shortlink: http://wp.me/pKrrB-3Mk

There has been considerable confusion, recently, around the various ICD-11 Beta draft proposals for the revision of ICD-10’s Somatoform disorders.

Confusion, also around the current status of the ICD-10 G93.3 terms, Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome within the ICD-11 Beta drafting platform.

This post is an update to Post #291, January 29, 2014, titled:

Between a Rock and a Hard Place: ICD-11 Beta draft: Definition added for “Bodily distress disorder”

and Post #293, February 8, 2014, titled:

Update on classification of the ICD-10 G93.3 categories within the ICD-11 Beta draft

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On February 12, an unnamed WHO Twitter admin posted this reply to a member of the public:

WHO ‏@WHO 

@secretspartacus Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11

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This 12 Point Skinny is also on TwitLonger:

http://www.twitlonger.com/show/n_1s0o6a6

Here’s a brief summary of how things stand in the Beta drafting platform at February 24, 2014. If reposting, please repost unedited and with source URL:

http://wp.me/pKrrB-3Mk  

Dx Revision Watch’s 12 Point Skinny on ICD-11:

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1. The ICD-10 terms, PVFS, BME, CFS, are not currently listed in the public version of the Beta drafting platform, under any chapter, either as ICD Title terms, or as Inclusion terms to an ICD Title term, or under Synonyms to an ICD Title term.

2. On Feb 12, 2014, an unnamed @WHO Twitter admin replied to a member of the public, stating: “Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11”.

3. But WHO/ICD Revision has yet to clarify intentions for classification of PVFS, BME, CFS within ICD-11, in terms of chapter locations, parent classes, hierarchies, definitions etc.

4. WHO/ICD Revision has been asked to explain the reason for the current absence of these terms and to issue a statement of clarification.

5. Two separate working groups are charged with advising on the revision of the Somatoform disorders section.

6. In 2012, two sets of emerging proposals were published – one for Bodily distress disorder (BDD) and one for Bodily stress syndrome (BSS).

7. In 2012, emerging proposals by the S3DWG (Gureje, Creed’s sub working group) for Bodily distress disorder (BDD were for an SSD-like psychobehavioural responses construct/criteria [1].

8. In 2012, emerging proposals by the PCCG (Goldberg’s Primary Care Consultation Group) for Bodily stress syndrome (BSS). drew heavily on a Fink et al BDS-like symptom patterns from body systems construct/criteria, but with some SSD-like psychobehavioural responses tacked on (a mash-up between two divergent constructs) [2].

9. The Definition for Bodily distress disorder (BDD) [3] recently inserted into the Beta drafting platform is based on disorder description wording from the 2012 Gureje, Creed BDD paper [1].

10. BDD had a child category, Severe bodily distress disorder. This is now removed from the draft. ICD-10’s Somatization disorder has been restored to the draft as a child category to parent, Bodily distress disorder. Additionally, ICD-10’s F48.0 Neurasthenia has been restored to the draft.

F48.0 Neurasthenia plus seven ICD-10 Somatoform disorder categories (F45.0 – F45.9) were previously proposed to be subsumed by a single new disorder construct, BDD [1].

11. Without full disorder description, criteria, inclusions, exclusions, differential diagnoses etc, there is currently insufficient information in the Beta draft to determine the nature of whatever construct and criteria is being progressed to field tests.

12. ICD-11 Beta is a work in progress, updated daily, not finalized, subject to field test evaluation, not approved by ICD Revision or WHO.

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References for 12 Point Skinny on ICD-11:

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. http://www.ncbi.nlm.nih.gov/pubmed/23244611 [Full text behind paywall]

2. Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS: Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Fam Pract Feb 2013 [Epub ahead of print July 2012]. http://www.ncbi.nlm.nih.gov/pubmed/22843638. Full free text: http://fampra.oxfordjournals.org/content/30/1/76.long

3. ICD-11 Beta drafting platform public version: Bodily distress disorder: http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f767044268

Caveat: The ICD-11 Beta drafting platform is not a static document: it is a work in progress, subject to daily edits and revisions, to field test evaluation and to approval by Topic Advisory Group Managing Editors, the ICD Revision Steering Group and WHO classification experts.

Update on ICD-11 Beta drafting platform listing for “Bodily distress disorder”

Post #296 Shortlink: http://wp.me/pKrrB-3M2

This post is an update to Post #291, January 29, 2014, titled:

Between a Rock and a Hard Place: ICD-11 Beta draft: Definition added for “Bodily distress disorder”

Caveat: The ICD-11 Beta drafting platform is not a static document: it is a work in progress, subject to daily edits and revisions, to field test evaluation and to approval by Topic Advisory Group Managing Editors, the ICD Revision Steering Group and WHO classification experts.

Since the release of the initial iCAT drafting platform, in 2010, the Somatoform disorders section of Chapter 05 has undergone numerous iterations.

In Post #291, I reported on the status of the Beta drafting platform at January 29, when it had stood like this:

BDD at 02.02.14

Source: ICD-11 Beta drafting platform, Chapter 05, at January 29, 2014

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There has been a further recent change to this section of the drafting platform and the draft currently stands like this:

http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f767044268

BDD 240214

Source: ICD-11 Beta drafting platform, Chapter 05, at February 24, 2014

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In the Foundation Component, the severity specifier, Severe bodily distress disorder, has now been removed.

ICD-10’s Somatization disorder has been reinserted as a child category under Bodily distress disorder.

The term Bodily distress disorder is cross referenced to ICD-10 F45 Somatoform disorders.

Somatoform disorders is listed under Synonyms to Bodily distress disorder.

The Definition for Bodily distress disorder remains the same as previously reported:

http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f767044268

“Bodily distress disorder is characterized by high levels of preoccupation regarding bodily symptoms, unusually frequent or persistent medical help-seeking, and avoidance of normal activities for fear of damaging the body. These features are sufficiently persistent and distressing to lead to impairment in personal, family, social, educational, occupational or other important areas of functioning. The most common symptoms include pain (including musculoskeletal and chest pains, backache, headaches), fatigue, gastrointestinal symptoms, and respiratory symptoms, although patients may be preoccupied with any bodily symptoms. Bodily distress disorder most commonly involves multiple bodily symptoms, though some cases involve a single very bothersome symptom (usually pain or fatigue).”

Note: these psychobehavioural responses that characterize the disorder are based on text in the 2012 Creed and Gureje paper on emerging proposals for Bodily distress disorder [1].

That paper also says that in doing away with the “unreliable assumption of its causality” the diagnosis of BDD does not exclude the presence of a co-occurring physical health condition – which describes a disorder framework into which DSM-5′s “Somatic Symptom Disorder” (SSD) would be capable of integration, allowing harmonization between ICD-11 and DSM-5.

The Exclusions listed under Bodily distress disorder are legacy terms imported from ICD-10’s Somatoform disorders section. Hypochondriasis has also been inserted as an Exclusion to Bodily distress disorder.

If you open the description display pane for child category, Somatization disorder:

http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f967191413

you’ll see that the Definition that has been reinserted is legacy text imported from ICD-10’s F45.0 Somatization disorder.

The Definition includes the text: “Short-lived (less than two years) and less striking symptom patterns should be classified under undifferentiated somatoform disorder (F45.1).”

Note: there is no Undifferentiated somatoform disorder listed in the ICD-11 Beta draft. I cannot confirm whether ICD-11 Revision also intends to reinsert Undifferentiated somatoform disorder to the ICD-11 Beta draft, or whether this represents an oversight on the part of the Beta draft Managing editors to edit the text that has been imported from ICD-10 to accord with ICD-11 proposals.

If you go to the Foundation Component view:

http://apps.who.int/classifications/icd11/browse/l-m/en#/http://id.who.int/icd/entity/767044268

and hover over the blue, red, yellow, green button at the top right of the chapter listings, the hover reads

“show/hide availability in main linearizations”.

Click on the button and coloured tags will display at the beginning of each category term which indicate the availability of that term within the various linearizations.

For example, hovering over the colour tags for Bodily distress disorder  indicates that this Foundation Component term is available in “In Mortality and Morbidity, Primary Care High Resource, Primary Care Low Resource” linearizations.

Hovering over the recently re-inserted Somatization disorder indicates that this Foundation Component term is available “In Mortality and Morbidity, Primary Care High Resource, Primary Care Low Resource” linearizations. (On February 18, it was displaying as available only in Foundation, Primary Care High Resource and Primary Care Low Resource.)

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Neurasthenia

A further change – Neurasthenia has also been reinserted into the Beta draft!

Neurasthenia had previously been proposed to be eliminated for ICD-11 or subsumed under Bodily distress disorder along with seven Somatoform disorder categories:

Somatization disorder;
Undifferentiated somatoform disorder;
Somatoform autonomic dysfunction;
Persistent somatoform pain disorder;
Chronic pain disorder with somatic and psychological factors [not in ICD-10 but had been proposed for ICD-11];
Other somatoform disorders;

Somatoform disorder, unspecified

Neurasthenia has also been proposed to be eliminated from the Primary Care version (ICD-11-PHC), according to the 2012 proposals of the Primary Care Consultation Group, but now its back in the draft and listed for Foundation Component, Primary Care High Resource and Primary Care Low Resource linearizations (but not Mortality and Morbidity).

It is currently listed thus:

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/1784516726

Neurasthenia240214

The Long Content Model Definition that displays in the disorder description pane is the legacy F48.0 text unmodified from ICD-10.

Fatigue syndrome* is specified as the Inclusion term, as per ICD-10. [If you hover over the asterisk in the draft it displays the hover: “This term is an inclusion term in the linearizations”.]

ICD-10 G93.3 category, postviral fatigue syndrome, remains listed as an Exclusion to Neurasthenia, as it does in ICD-10.

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So what are the implications?

Without clarifications from ICD Revision it cannot be determined from what displays in the public version of the Beta draft what the current intentions are, or how these revised proposals would accommodate the restoration of Somatization disorder and Neurasthenia within the BDD framework (at least as the BDD framework stood in the 2012 Creed and Gureje emerging proposals paper).

All that can safely be said in relation to this section of the draft is:

that the section parent category remains Bodily distress disorder;

that a child category, Somatization disorder, which was previously one of a handful of SDs proposed to be replaced by a single new BDD category, has now been reinserted for the Foundation Component, Mortality and Morbidity, Primary Care High Resource and Primary Care Low Resource linearizations, with its Definition text unmodified from ICD-10.

that currently, the Definition text for Somatization disorder is unmodified from ICD-10 and includes an unexplained reference to F45.1 Undifferentiated somatoform disorder*.

that Severe bodily distress disorder is no longer listed in any linearization, at least in the public version of the Beta drafting platform.

that Neurasthenia, which was previously proposed to be eliminated for both the core and primary care versions, is now back in the Beta draft for Foundation Component, Primary Care High Resource and Primary Care Low Resource linearizations, with its Definition text unmodified from ICD-10.

But I have no clarification of intention or any information on what definition, disorder descriptions and criteria set will be going forward to ICD-11 field tests, and it could all change again, next week…

*In DSM-5, Somatic symptom disorder is cross-walked to ICD-10-CM F45.1 Undifferentiated somatoform disorder.

NCHS/CMS has proposed to insert the term Somatic symptom disorder into ICD-10-CM as an Inclusion to F45.1 Undifferentiated somatoform disorder.

References:

Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. http://www.ncbi.nlm.nih.gov/pubmed/23244611 [Full text behind paywall]

Final post on Dx Revision Watch

Post #294 Shortlink: http://wp.me/pKrrB-3L2

This will be the final post on Dx Revision Watch.

As from today, I am stepping back from advocacy work and from monitoring and reporting via this site.

Dx Revision Watch will remain online for the foreseeable future as a resource. Other than updating some existing posts, no new postings or reports will be added.

Before using this site or republishing content please read the Disclaimer Notes

Suzy Chapman
Dx Revision Watch

“He that reads and grows no wiser seldom suspects his own deficiency, but complains of hard words and obscure sentences, and asks why books are written which cannot be understood.”  Samuel Johnson

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Update on classification of the ICD-10 G93.3 categories within the ICD-11 Beta draft

Post #293 Shortlink: http://wp.me/pKrrB-3IX

Update on February 25, 2014:

See updates on this post for Annette Brooke MP’s Parliamentary Oral Question concerning ICD-11 and ME, CFS on February 25, and the Oral Response from The Parliamentary Under-Secretary of State for Health (Jane Ellison).

Update on February 12, 2014:

Following some confusion in the media, WHO posted this disclaimer via @WHO on Twitter on February 12:

WHO ‏@WHO 

ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11

Towards the end of January, ICD Revision confirmed a decision to postpone presentation of ICD-11 for World Health Assembly approval by a further two years, from May 2015 to May 2017, to allow more time for development and field studies.

Caveats: The ICD-11 Beta draft is not a static document. As a work in progress, the Beta draft is subject to daily revisions and additions of textual content, to field test evaluation, and to approval by the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders, ICD-11 Revision Steering Group, and WHO classification experts.

Black Hole Milkyway

In an earlier post (Between a Rock and a Hard Place: ICD-11 Beta draft: Definition added for “Bodily distress disorder”) I reported on what is publicly known about the current status of proposals for the revision of ICD-10’s Somatoform disorders for ICD-11.

PVFS, BME, CFS

This post updates on the status of the three ICD-10 G93.3 categories, Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome within the ICD-11 Beta drafting platform.

Information in this report is derived entirely from the public versions of the iCAT > Alpha > Beta drafting platforms, not the collaborative editing platforms used by ICD Revision, to which the public has no access.

Within ICD-10, the three terms are coded or indexed to the Diseases of the nervous system chapter.

In ICD-10, the Mental and behavioural disorders chapter (codes F00-F99) is numbered Chapter V.
The Diseases of the nervous system chapter (codes G00-G99) is numbered Chapter VI.

For ICD-11 Beta draft, the order and numbering of chapters has undergone some reorganization, currently:

Mental and behavioural disorders chapter remains numbered as Chapter 05;
A Sleep-wake disorders chapter has been inserted at Chapter 06;
Diseases of the nervous system chapter has been renumbered to Chapter 07.

Chapter 07 can be viewed in the ICD-11 Beta drafting platform Foundation Component View, here:

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

and in the Joint Linearization for Mortality and Morbidity Statistics View, here:

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

(Clicking on the small grey arrows at the beginning of category terms will open drop down parent, child and grandchildren hierarchies.)

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Timeline charting progression of the three ICD-10 G93.3 categories, Postviral fatigue syndrome, Benign myalgic encephalomyelitis, and Chronic fatigue syndrome (ICD-10 Index only) within the public version of the ICD-11 drafting platform:

[Click on links for my archived screenshots from the iCAT, Alpha draft and Beta draft.]

May 2010: iCAT preliminary drafting platform: For the chapter Diseases of the nervous system, this iCAT Discussion Note records a change in hierarchy for class: G93.3 Postviral fatigue syndrome. Its parent: G93 Other disorders of brain is being removed. New parent added: Other disorders of the nervous system.

Additionally, this Change History note records that ICD Title term: Postviral fatigue syndrome is being replaced by new ICD Title term: Chronic fatigue syndrome.

A Definition is inserted for new ICD Title: Chronic fatigue syndrome.

Benign myalgic encephalomyelitis is listed as an Inclusion term to new ICD Title: Chronic fatigue syndrome.

At this point, there is no listing of Postviral fatigue syndrome under Synonyms or Inclusions to ICD Title: Chronic fatigue syndrome, nor elsewhere within the iCAT draft, other than remaining listed as an Exclusion term to F48.0 Neurasthenia and R53 Malaise and fatigue.

May 2011: Alpha drafting platform launches: New ICD Title: Chronic fatigue syndrome remains coded under parent class Other disorders of the nervous system. “Virus (organism)” is listed under the Content Model parameter for “Causal Mechanisms.”

Benign myalgic encephalomyelitis remains listed as an Inclusion term to ICD Title: Chronic fatigue syndrome.

The term Postviral fatigue syndrome remains unaccounted for.

May 2012: Beta drafting platform launches

July 2012: Beta draft: ICD Title: Chronic fatigue syndrome can no longer be found as a child category directly under parent class: Other disorders of the nervous system.

If searched for, the term displays instead under a new “Selected Cause” section, which displays as a kind of subset or sub linearization within the Foundation Component View. It displays with three parents:

Selected cause is Remainder of diseases of the nervous system in Condensed and selected Infant and child mortality lists
Selected Cause is All other diseases in the Selected General mortality list
Selected cause is Diseases of the nervous system

as here, in this July 25, 2012 screenshot.

A large number of terms from other chapters are now also grouped under this “Selected Cause” subset within the Foundation Component. There is no explanation in the public version of the Beta draft what the purpose of the “Selected Cause” subset is or how the categories now listed under it relate to the parent classes under which they were previously coded as child categories. (These “Selected Cause” listings are later dispensed with, at least in the public version of the Beta draft, or are possibly disabled from being generated.)

Other changes: The Definition field for Chronic fatigue syndrome is now blanked.

Benign myalgic encephalomyelitis is listed under Synonyms and specified as an Inclusion term in the linearizations.

13 additional terms are now listed under Synonyms, including Postviral fatigue syndrome, and two terms imported from ICD-10-CM (the ICD-10-CM Chapter 18 R codes: chronic fatigue syndrome nos and chronic fatigue, unspecified).

November 2012: Beta draft: As above, but a brief, revised Definition for Chronic fatigue syndrome has now been inserted by ICD-11 Revision. It reads as follows:

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.

I have sourced this Definition to this ICD Revision Rare Diseases internal document titled: “Import_RD_definitions” (the Definition text is listed in this .txt file at “1983|Chronic fatigue syndrome|http://who.int/icd#G93.3…”).

Spring 2013: Beta draft:

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

However, Postviral fatigue syndrome remains listed in the Beta draft as an Exclusion term to Chapter 19: Fatigue and Benign myalgic encephalomyelitis remains listed as an Exclusion term to Chapter 01: Encephalitis, myelitis and encephalomyelitis.*

*In ICD-10, the Title term, G93.3 Postviral fatigue syndrome is also an Exclusion term to F48.0 Neurasthenia. But for ICD-11 and ICD-11-PHC (the primary health care version), the proposal is to eliminate F48.0 Neurasthenia or subsume it under a new, single, “Bodily stress syndrome” (BSS) or “Bodily distress disorder” (BDD) category, in Chapter 05, which is proposed to replace a number of existing ICD-10 Somatoform disorders.

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A Beta draft black hole?

June 2013–February 2014: During this period I have contacted several key ICD-11 Revision personnel and the Chair of the Topic Advisory Group for Neurology, directly, with polite requests for clarification of ICD-11 Revision’s current intentions for the chapter classification, coding and hierarchical relationship for these three ICD-10 G93.3 entities.

I have also submitted, via the public version of the Beta drafting platform, a number of requests for clarification and an explanation for their current absence from the draft. At the time of publishing, I have received no clarification from any quarter, either directly, or via the Beta platform.

If the (now 12 month long) absence of these three terms is due to administrative error or oversight, then ICD Revision has had around a dozen opportunities, since last June, to respond to me with an explanation or to restore these three terms to the Beta draft.

It appears this is an issue that no-one involved in the development of the Beta draft is prepared to be accountable for.

I have asked for clarification for the following:

(…) Currently, no entry for any of the terms, Chronic Fatigue Syndrome; Benign Myalgic encephalomyelitis; or Postviral fatigue syndrome, under any hierarchy, can be found within any chapter of ICD-11 Beta, in either the Foundation or Morbidity Linearization views, the PDF print version, or the PDF of the Index.

1. Under which chapter and parent categories are the three ICD-10 G93.3 entities

Chronic Fatigue Syndrome;
Benign Myalgic encephalomyelitis;
Postviral fatigue syndrome

currently proposed to be classified within ICD-11?

2. What is the current proposed hierarchy or relationship within ICD-11 between these three entities, in terms of Title term, Inclusion term, Synonym, and which of these three terms are proposed to be assigned a Definition and other “Content Model” parameters?

3. What is the reason for these three terms not currently displaying in the public version of the Beta drafting platform?

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So why have these three ICD-10 terms disappeared and why is ICD Revision reluctant to respond?

The reports on this site are evidence based: in the absence of clarifications directly from ICD Revision, or documentary evidence from reliable sources, I prefer, in general, not to speculate but here are some speculative reasons which might account for the current absence of these three terms from the public version of the Beta draft:

There has been no significant change to proposals in the last 12 months, but the terms have been removed from the draft in order to mitigate controversy over the proposed change of hierarchy (i.e. whether a term is included as a Title term, coded for and assigned a Definition and other Content Model descriptions, or specified as an Inclusion Term to a coded term, or listed under Synonyms to a coded term) and/or over the wording of any proposed Definition or other Content Model descriptive text.

 Topic Advisory Group (TAG) for Neurology intends to retain these three terms under Chapter 07, under an existing parent class that is still undergoing reorganization, and has taken these three terms out of the linearizations in the meantime.

TAG Neurology intends to locate the terms under a new Chapter 07 parent class which does not currently display in the linearizations in the public version of the Beta, or which does display but for which child categories have yet to be populated.

TAG Neurology intends to locate one or more of these terms under a parent class within a subset or sub linearization that cannot currently be generated within the public version of the Beta, for technical reasons.

Unlike ICD-10, multiple parents are allowable under ICD-11: TAG Neurology may intend to assign one or more or these terms to multiple parents within the same chapter, or to code to parents located under more than one chapter, for example, under parent classes, Symptoms, signs and clinical findings involving the nervous and musculoskeletal system or Functional disorders of the nervous system (located under both Chapter 07 and Chapter 19), and has removed the terms in the meantime in order to avoid controversy.

Many categories within ICD-11 are already coded under multiple parents where a disease overlaps two chapters, with the term in black text under the primary parent location and in grey text for the secondary or tertiary location(s), e.g. a skin tumor is both a skin disease and a neoplasm; diseases of the eye as a result of diabetes, or as a result of developmental anomalies.

At one point, ICD Revision was discussing a proposal for a Multisystem Diseases Chapter. This has been rejected in favour of potentially assigning diseases that affect multiple body systems to multiple parents across overlapping chapters, or creating a specific linearization for multisystem diseases as a virtual chapter within the electronic version of ICD-11.

TAG Neurology proposes to retire one or more of these three terms (despite earlier assurances by senior WHO classification experts):

TAG Neurology and TAG Mental Health may be under pressure from the Primary Care Consultation Group to adopt a proposed replacement for the ICD-10 Somatoform disorders that draws heavily on the Per Fink et al construct, “Bodily Distress Syndrome” (BDS). BDS is a single, unifying diagnosis that is inclusive of the somatoform disorders, and the so-called “functional somatic syndromes,” FM, CFS and IBS (which are currently discretely coded or indexed, within ICD-10, in chapters outside the mental and behavioural disorders chapter).

If consensus has not yet been reached about whether the proposed replacement for ICD-10’s Somatoform disorders will more closely mirror DSM-5’s “Somatic symptom disorder” or will incorporate elements of Fink et al’s “Bodily Distress Syndrome,” the three terms, Chronic Fatigue Syndrome, Benign Myalgic encephalomyelitis and Postviral fatigue syndrome may have been removed from the public version of the Beta draft in order to avoid controversy. (It is not yet known which of the two advisory groups’ proposals will be progressing to field testing, this year.)

TAG Neurology may have removed these terms from the public version of the Beta draft in order to avoid controversies surrounding the development of CFS and ME case definitions, for example, the issue 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.”

Whatever the reason, ICD Revision has repeatedly dodged accountability and transparency for its actions.

Having “disappeared” these three ICD terms from the Beta draft, with no explanation, WHO and the ICD Revision Steering Group are disenfranchising professional and advocacy stakeholders from scrutiny of, and participation in the revision process.

Compiled by Suzy Chapman | Dx Revision Watch
Image | Wikimedia Commons courtesy Ute Kraus, Physics education group Kraus, Universität Hildesheim, Space Time Travel, (background image of the milky way: Axel Mellinger)

Between a Rock and a Hard Place: ICD-11 Beta draft: Definition added for “Bodily distress disorder”

Post #291 Shortlink: http://wp.me/pKrrB-3Gl

Update on February 2, 2014:

Since publishing my report, below, the Chapter 5 parent class:

“Bodily distress disorders, and psychological and behavioural factors associated with disorders or diseases classified elsewhere”

has been reverted by ICD-11 Revision to read, “Bodily distress disorders”.

The category, 5C70 Psychological and behavioural factors associated with disorders or diseases classified elsewhere [F54 in ICD-10], which had been, and remains listed as an Exclusion to class “Bodily distress disorders”, is now coded towards the end of the list of Chapter 5 Mental and behavioural disorders categories, rather than listed as a hierarchical child category under:

“Bodily distress disorders, and psychological and behavioural factors associated with disorders or diseases classified elsewhere”.

Note that the Definition and Inclusions for “5C70 Psychological and behavioural factors associated with disorders or diseases classified elsewhere” are legacy text carried over from ICD-10. The Fxx codes listed under “Exclusions” for this category have not yet been updated to reflect the new ICD-11 coding structure.

This section of Chapter 5 now displays as in this screenshot, immediately below, when viewed in the ICD-11 Beta drafting platform Foundation View, at February, 2, 2014:

http://apps.who.int/classifications/icd11/browse/f/en#/http%3a%2f%2fid.who.int%2ficd%2fentity%2f1472866636

BDD at 02.02.14

A change also for Hypochondriasis – which has also been removed from under parent class, Bodily distress disorders, and is currently assigned dual parentage under: Obsessive-compulsive and related disorders; and Anxiety and fear-related disorders.

This means that the only categories currently coded under parent term “Bodily distress disorders” (previously, “Bodily distress disorders, and psychological and behavioural factors associated with disorders or diseases classified elsewhere”) are “Bodily distress disorder” and “Severe bodily distress disorder

Update on February 1, 2014:

In June 2013, Prof David Goldberg co-authored a paper: Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (MUS) in Mental Health in Family Medicine. Co-author, Gabriel Ivbijaro, is Editor in Chief, Mental Health in Family Medicine and a past Chair of the Wonca Working Party on Mental Health. Mental Health in Family Medicine is the official journal of The World Organization of Family Doctors (Wonca) Working Party on Mental Health. I don’t have access to this paper, which is currently embargoed, but it should be free in PMC on June 1, 2014 [5].

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BDDJan_28_14

Screenshot: Chapter 5, ICD-11 Beta drafting platform, public version: January 29, 2014

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Between a Rock and a Hard Place

A definition for “Bodily distress disorder” has very recently been entered into the public version of the ICD-11 Beta drafting platform by ICD-11 Revision.

You can view the definition text, as it stands at January 29, in the public version of the Beta drafting platform, here:

Joint Linearization for Mortality and Morbidity Statistics view

Bodily distress disorder

Parent(s)

Bodily distress disorders, and psychological and behavioural factors associated with disorders or diseases classified elsewhere

Definition

Bodily distress disorder is characterized by high levels of preoccupation regarding bodily symptoms, unusually frequent or persistent medical help-seeking, and avoidance of normal activities for fear of damaging the body. These features are sufficiently persistent and distressing to lead to impairment in personal, family, social, educational, occupational or other important areas of functioning. The most common symptoms include pain (including musculoskeletal and chest pains, backache, headaches), fatigue, gastrointestinal symptoms, and respiratory symptoms, although patients may be preoccupied with any bodily symptoms. Bodily distress disorder most commonly involves multiple bodily symptoms, though some cases involve a single very bothersome symptom (usually pain or fatigue).

All Index Terms

  • Bodily distress disorder

Or here, in the Beta Foundation view

—————-

Only the ICD-11 Short (100 word) Definition for this proposed new ICD category has been inserted. At this point, no Inclusion Terms, Exclusions, Synonyms, Narrower Terms, Diagnostic Criteria or other potential Content Model descriptors have been populated.

No Definition or severity characteristics have yet been assigned to Severe bodily distress disorder to differentiate between the two coded severities: “Bodily distress disorder” and “Severe bodily distress disorder.” (Unique codes for a “Mild bodily distress disorder” and a “Moderate bodily distress disorder” were dropped in mid 2013.)

In order to place this development into context here are some notes:

It’s important to understand that there are two working groups reporting to the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders that are charged with making recommendations on the revision of the Somatoform Disorders for the primary care version and core version of ICD-11:

The 12 member Primary Care Consultation Group (PCCG) leads the development and field testing of the revision of all 28 mental and behavioural disorders for inclusion in the next ICD primary care classification (ICD-11-PHC), an abridged version of the core ICD classification. The PCCG is chaired by Prof Sir David Goldberg. Per Fink’s colleague, Marianne Rosendal, is a member of this group.

The 17 member Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG) is advising on the revision of ICD-10’s Somatoform Disorders. The S3DWG is chaired by Prof Oye Gureje. DSM-5 Somatic Symptom Disorder work group member, Prof Francis Creed, is a member of this group.

In 2011, the Primary Care Consultation Group’s proposals for a replacement for the “Unexplained somatic symptoms/medically unexplained symptoms” category were put out for review and evaluation in primary care settings to nine  international focus groups* in seven countries [1].

*Austria, Brazil, Hong Kong, New Zealand, Pakistan, Tanzania and United Kingdom.

The PCCG anticipated refining their recommendations in the light of focus group responses before progressing to field testing the new disorder.

New disorders that survive the primary care field tests must have an equivalent disorder in the main ICD-11 classification.

Since any new primary care disorder concept will need to integrate into the ICD-11 core version, one might expect some cross-group collaboration between these two advisory committees.

But in their respective 2012 journal papers, the groups presented divergent constructs and neither group refers to the work being undertaken by the other group, or sets out how the two groups relate to each other, or how the primary care group relates to the overall revision process for the Somatoform Disorders.

The specific tasks of the S3DWG include, among others:

“3. To provide drafts of the content (e.g. definitions, descriptions, diagnostic guidelines) for somatic distress and dissociative disorder categories in line with the overall ICD revision requirements.

“4. To propose entities and descriptions that are needed for classification of somatic distress and dissociative disorders in different types of primary care settings, particularly in low- and middle-income countries.”

It is unclear how ICD-11 Revision is co-ordinating the input from the two groups, that is, will it be the PCCG’s revised recommendations that progress to field testing, this year, and if so, how would a divergent set of proposals, developed in parallel by the S3DWG group, relate to the field testing and to the overall revision of the SDs?

Or, will ICD-11 Revision require the PCCG group and the S3DWG group to agree on what to call any proposed, single disorder replacement for six or seven SD categories and to reach consensus over what construct, definition, characteristics and criteria will go forward to ICD-11 field testing, and if so, has consensus now been reached?

Field tests are expected to start this year. Currently, there is no publicly available information on the finalized characteristics, diagnostic guidelines, criteria, inclusions, exclusions, differential diagnoses etc. that are planned to be used for the field tests which would provide the level of detail lacking in this Beta draft definition.

It has been crafted with sufficient elasticity to allow either group’s construct to be shoehorned into it.

ICD-11 Revision is possibly hedging its bets depending on the outcome of its field tests. But the devil’s in the detail and without the detail, it isn’t clear whether this definition describes the construct favoured by the S3DWG in late 2012, or by the PCCG in mid 2012, or a more recent revision by one of the groups, or a compromise between the two.

The definition wording is based – in some places verbatim – on the construct descriptions presented in the Gureje, Creed (S3DWG) “Emerging themes…” paper, published in late 2012 [2].

Extract, Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012:

“…At the time of preparing this review, a major highlight of the proposals of the S3DWG for the revision of the ICD-10 somatoform disorders is that of subsuming all of the ICD-10 categories of F45.0 – F45.9 and F48.0 under a single category with a new name of ‘bodily distress disorder’ (BDD).

“In the proposal, BDD is defined as ‘A disorder characterized by high levels of preoccupation related to bodily symptoms or fear of having a physical illness with associated distress and impairment. The features include preoccupation with bothersome bodily symptoms and their significance, persistent fears of having or developing a serious illness or unreasonable conviction of having an undetected physical illness, unusually frequent or persistent medical help-seeking and avoidance of normal activities for fear of damaging the body. These features are sufficiently persistent and distressing to lead to impairment of functioning or frequent seeking of reassurance.'”

This 2012 paper goes on to say that the S3DWG’s emerging proposals specify a much simplified set of criteria for a diagnosis of Bodily distress disorder (BDD) that requires the presence of: 1. High levels of preoccupation with a persistent and bothersome bodily symptom or symptoms; or unreasonable fear, or conviction, of having an undetected physical illness; plus 2. The bodily symptom(s) or fears about illness are distressing and are associated with impairment of functioning.

And that in doing away with the “unreliable assumption of its causality” the diagnosis of BDD does not exclude the presence of depression or anxiety, or of a co-occurring physical health condition.

Which is a disorder construct into which DSM-5’s “Somatic Symptom Disorder” (SSD) could be integrated, thus facilitating harmonization between ICD-11 and DSM-5.

But without clarification from ICD-11 Revision (or further published papers, reports or sight of the field test protocol) I do not think one can safely extrapolate that it is the current proposals of the S3DWG group that are going forward to field testing, this year, in preference to a construct and criteria favoured by the PCCG group.

With the caveat that proposals by both groups are likely to have been modified since publication of their respective 2012 papers, or may have since converged into a consensus concept, to recap briefly:

In mid 2012, the Goldberg led PCCG primary care group was proposing a new term called “Bodily stress syndrome (BSS),” to replace ICD’s primary care category, “F45 Unexplained somatic symptoms.” This single BSS category would also absorb F48 Neurasthenia, which is proposed to be eliminated for ICD-11-PHC.

In late 2012, the S3DWG group was proposing to subsume the six ICD-10 categories F45.0 – F45.9, plus F48.0 Neurasthenia, under a single disorder category, but under the disorder name, “Bodily distress disorder” (BDD).

So at that point, the two groups differed on what term should be used for this new disorder.

The two group’s proposed constructs, criteria and exclusions also diverged, with the PCCG group incorporating characteristics of Fink et al’s “Bodily Distress Syndrome” [3] construct, and based on the “autonomic arousal” (or “over-arousal”) illness model, with symptom clusters or symptom patterns from one or more body systems, but also requiring some SSD-like psychobehavioural responses to meet the diagnosis. But, “If the symptoms are accounted for by a known physical disease this is not BSS.”

While the emerging proposals of the S3DWG group leaned more towards a “pure” DSM-5 SSD-like construct that could be diagnosed in patients with persistent “excessive” psychobehavioural responses to bodily symptoms in the presence of any diagnosed disease, patients with so-called “functional somatic syndromes” and patients with somatic symptoms of unclear etiology, but with no evident requirement for specific symptom counts, or for symptom clusters from one or more body systems or for the symptoms to be “medically unexplained.” [4]

What wasn’t explicitly set out in the PCCG’s 2012 paper was whether the group intended to mirror the Fink et al BDS construct to the extent of extending the diagnosis to be inclusive of the so-called “functional somatic syndromes,” FM, CFS and IBS (which are currently discretely coded or indexed within ICD-10 in chapters outside the mental and behavioural disorders chapter).

This 2013 paper, below, interprets that it is the intention of the Primary Care Consultation Group to capture FM, CFS and IBS:

http://www.ncbi.nlm.nih.gov/pubmed/24295235

Free PDF: http://www.uam.es/becarios/jbarrada/papers/hads.pdf

Psychol Assess. 2013 Dec 2. [Epub ahead of print] Bifactor Analysis and Construct Validity of the HADS: A Cross-Sectional and Longitudinal Study in Fibromyalgia Patients. Luciano JV, Barrada JR, Aguado J, Osma J, García-Campayo J.

“[…] In the upcoming primary healthcare version of the ICD-11 (ICD-11-PHC), FM will be classified as part of bodily stress syndrome (BSS; Lam et al., 2013). This new diagnosis will group patients who might have previously been considered different (e.g., those with FM, chronic fatigue syndrome, irritable bowel syndrome, and so on). Frontline clinicians (e.g., GPs) will need reliable tools to identify possible/probable clinical cases of anxiety (i.e., cognitive over-arousal) among patients with BSS who are characterised by elevated somatic over-arousal…”

Prof Tony Dowell, New Zealand, is a member of the PPCG. In this slide presentation Prof Dowell lists IBS, Fibromylagia and CFS under “Bodily Stress Syndromes.” Prof Dowell is already promoting the use of the BSS construct, in New Zealand, despite its current lack of validation:

Slide presentation

Slide 29

Bodily Stress Syndromes

• Gastroenterology – IBS, Non ulcer dyspepsia
• Rheumatology – Fibromyalgia
• Cardiology – Non cardiac chest pain
• Respiratory – hyperventilation
• Dental – TMJ syndrome
• Neurology – ‘headache’
• Gynaecology – chronic pelvic pain
• Psychiatry – somatiform [sic] disorders
• Chronic fatigue Syndrome

Reading the responses of the focus groups, as reported in the Lam et al paper [1], it is evident that some focus group participants understood the proposed BSS construct as a diagnosis under which IBS, Fibromylagia and CFS patients could potentially be assigned; though one of the New Zealand focus groups noted there was quite a strong feeling that CFS did not fit the paradigm as well as other [FSS] disorders, particularly when there was a good history of preceding viral infection.

Whilst a number of diseases are listed in the PCCG criteria, as proposed in 2012, under “Differential diagnoses,” including multiple sclerosis, hyperparathyroidism, systemic lupus erythematosus and Lyme disease – IBS, Fibromylagia, CFS and ME are omitted from the list of “Differential diagnoses” examples.

In June 2013, Prof David Goldberg co-authored a paper: Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (MUS) in Mental Health in Family Medicine. Co-author, Gabriel Ivbijaro, is Editor in Chief, Mental Health in Family Medicine and a past Chair of the Wonca Working Party on Mental Health. Mental Health in Family Medicine is the official journal of The World Organization of Family Doctors (Wonca) Working Party on Mental Health.

I don’t have access to this paper, which is currently embargoed, but it should be free in PMC on June 1, 2014 [5].

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When viewing the Beta drafting platform, note that the descriptive text for the ICD-11 Beta draft parent term, “Bodily distress disorders, and psychological and behavioural factors associated with disorders or diseases classified elsewhere,” which can be viewed here: ICD-11 Beta drafting platform Foundation view is the legacy text from the beginning of the ICD-10 Somatoform Disorders section (compare in ICD-10 here):

This F45 section introduction text has not yet been revised to reflect the proposed dismantling and reorganization of the ICD-10 Somatoform Disorders section for ICD-11.

Caveat: The ICD-11 Beta draft is not a static document – it is a work in progress, subject to daily revisions and refinements and to approval by the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders, the ICD-11 Revision Steering Group, and WHO classification experts. Proposals for some new or revised disorders may be subject to re-evaluation and revision following ICD-11 field testing.

References:

1. Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS: Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Fam Pract Feb 2013 [Epub ahead of print July 2012]. http://www.ncbi.nlm.nih.gov/pubmed/22843638 [Full text behind paywall]

2. Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. http://www.ncbi.nlm.nih.gov/pubmed/23244611 [Full text behind paywall]

3. Fink et al’s Bodily Distress Syndrome

Per Fink and colleagues are lobbying for their “Bodily Distress Syndrome” (BDS) construct to be integrated into forthcoming classification systems and adopted as a diagnosis by primary care practitioners. They propose the reclassification of the somatoform disorders, pain disorder, neurasthenia and the so-called functional somatic syndromes, including fibromyalgia (FM), irritable bowel syndrome (IBS) and chronic fatigue syndrome (CFS), under a single, unifying diagnosis, “Bodily Distress Syndrome,” already in use in clinical and research settings in Denmark.

4. BDS, BDDs, BSS, BDD unscrambled

5. Ivbijaro G, Goldberg D. Bodily distress syndrome (BDS): the evolution from medically unexplained symptoms (MUS). Ment Health Fam Med. 2013 Jun;10(2):63-4. No abstract available. [PMID: 24427171] Currently embargoed: Free in PMC on June 1, 2014. PMC Archives

G Ivbijaro is Editor in Chief, Mental Health in Family Medicine and a past Chair of the Wonca Working Party on Mental Health. D Goldberg chairs the Primary Care Consultation Group (PCCG) leading the development and field testing of the next ICD primary care classification (ICD-11-PHC).

6. General information on ICD-11 Field Tests:

2012 Annual Report of the International Union of Psychological Science to the American Psychological Association Revision of World Health Organization’s ICD-10 Mental and Behavioural Disorders, Pierre L.-J. Ritchie, Ph.D, January, 2013, Pages 8-11

Click to access icd-report-2012.pdf

WHO ICD Revision Information Note: Field Trials, 23 January 2013

Click to access 15.Field_Trials.pdf