12 Point Skinny on ICD-11

Post #305 Shortlink: http://wp.me/pKrrB-3Rm

As no new posts will be added to the site from April, I leave you with my 12 Point Skinny on ICD-11 that I first published in February.

The version below has been updated to reflect changes since February.

A brief summary of how things stand in the Beta drafting platform at March 31, 2014.

If reposting, please repost unedited, with the publication date and source URL:

http://wp.me/pKrrB-3Rm

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

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

2. On Feb 12, 2014, @WHO Twitter admin stated: “Fibromyalgia, ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, there is no proposal to do so for ICD-11″. This position was also confirmed by Mr Gregory Härtl, Head of Public Relations/Social Media, WHO.

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

4. Since June 2013, multiple requests have been made to WHO/ICD Revision to explain the reason for the current absence of these terms from the draft and to issue a statement of clarification. On March 18, 2014, a joint letter was sent to key WHO/ICD Revision personnel [1].

5. Two separate working groups are charged with advising on the revision of the ICD-10 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 [2].

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) [3].

9. The current Definition for Bodily distress disorder (BDD), as inserted in the Beta drafting platform, [4] is based on disorder description wording in the 2012 Gureje, Creed BDD paper, which had described an SSD-like construct [2].

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 linearizations as a child category to parent, Bodily distress disorder. Additionally, ICD-10′s F48.0 Neurasthenia has been restored to the draft linearizations, under parent Mental and behavioural disorders.

Seven ICD-10 Somatoform disorders categories (F45.0 – F45.9) plus F48.0 Neurasthenia had previously been proposed to be subsumed by a single new disorder construct, BDD [2]. How these two (now restored) legacy categories from ICD-10 are currently envisaged to relate to any new single disorder framework to replace the Somatoform disorders remains to be clarified.

11. Without full disorder descriptions, criteria, inclusions, exclusions, differential diagnoses etc, there is insufficient information in the public version of the Beta draft to determine the characteristics and criteria for whatever construct is being progressed to field tests, or to determine whether the two advisory groups have reached consensus.

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.

+++
References for 12 Point Skinny on ICD-11:

1. Joint letter signed by Annette Brooke MP, Chair, All Party Parliamentary Group on M.E., Countess of Mar, Chair, House of Lords-led group Forward ME, Dr Charles Shepherd, Medical Adviser of the ME Association, Sonya Chawdhury, Chief Executive, Action for M.E.
http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/get-informed/who-icd-11-letter-17-3-14-sc.pdf

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. 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

4. 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

Caveats: 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.

 

Clarification: Coalition for Diagnostic Rights

A website called Coalition for Diagnostic Rights has recently been launched.
The site includes references to Suzy Chapman and to Dx Revision Watch.
Suzy Chapman/Dx Revision Watch is not associated with or affiliated to the Coalition for Diagnostic Rights website or with any organization associated with that site, and has no responsibility for content published on that site, or published in the name of that site on other platforms.
Suzy Chapman
Dx Revision Watch

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

Post #301 Shortlink: http://wp.me/pKrrB-3Pp

Today, Sonya Chawdhury, CEO, Action for M.E., has released an Open Letter to Dr Ra’ad Shakir, Chair, ICD-11 Revision Topic Advisory Group for Neurology.

The Open Letter has been copied to Tarun Dua, Managing Editor, Neurology Topic Advisory Group, WHO; Christopher Chute, Chair, ICD Revision Steering Group, WHO; Dr Geoffrey Reed, Senior Project Officer, International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders, ICD-11, WHO; Dr Margaret Chan, Director General, WHO; Dr Robert Jakob, MD, Medical Adviser, WHO.

In the interests of transparency, I have acted in an advisory capacity in the preparation of this joint letter in respect of existing ICD-10 coding, proposals for the G93.3 terms for ICD-11, as they had stood in January 2013, and around Beta drafting platform technicalities.

http://www.actionforme.org.uk/get-informed/news/policy-and-campaigns/open-letter-to-who-over-classification

Open letter to WHO over classification

18 March, 2014

Action for M.E.

Chief Executive Sonya Chowdhury has written an open letter to Dr Ra’ad Shakir, Chair of the World Health Organisation neurology topic advisory group, regarding concerns over the classification of M.E./CFS in the WHO ICD-11.

There has been concern within the M.E. community that the three ICD-10 G93.3 terms, PVFS (Postviral Fatigue Syndrome), BME (Benign Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome) have been missing from the public version of ICD-11 Beta draft since early 2013.

The letter which has been produced collectively, is also signed by Annette Brooke MP, Chair of the All Party Parliamentary Group on M.E., the Countess of Mar, Chair of the House of Lords-led group Forward ME, and Dr Charles Shepherd, Medical Adviser of the ME Association who, like Sonya, is a member of the APPG secretariat.

The PDF of the joint letter can be read here:

http://www.actionforme.org.uk/Resources/Action%20for%20ME/Documents/get-informed/who-icd-11-letter-17-3-14-sc.pdf

Open PDF here:  Click link for PDF document   Joint Open Letter to WHO/ICD 03.18.14

Text

OPEN LETTER

Dr Ra’’ad Shakir
Chair, WHO Neurology Topic Advisory Group
Chief of Neurology
Imperial College NHS Trust
Charing Cross Hospital
London

17th March 2014

Dear Dr Shakir

Re: WHO ICD-11 Beta draft classification

We are writing, collectively, on behalf of the estimated 250,000 people with M.E./CFS. in the UK.

As you may be aware, there has been considerable discussion and concern expressed within the M.E./CFS community regarding the WHO ICD-11 classification.

As both individuals and organisations, we have received a number of questions and concerns from people affected by M.E./CFS and are therefore writing to seek clarification to enable us to respond accordingly.

We are keen to work collaboratively with others to help empower and support people affected by M.E. and as such, would be very happy to discuss this further with you directly or welcome you to a meeting of either the All Party Parliamentary Group on M.E. or Forward M.E. (a House of Lords-led collaboration).

A summary of our current understanding

The three ICD-10 G93.3 terms, PVFS (Postviral fatigue syndrome), BME (Benign myalgic encephalomyelitis) and CFS (Chronic fatigue syndrome) have been missing from the public version of ICD-11 Beta draft since early 2013.

Prior to early 2013, in the public version of the ICD-11 Beta drafting platform, Chronic Fatigue Syndrome had been listed in the Foundation Component as an ICD Title entity under Diseases of the nervous system, with Benign Myalgic encephalomyelitis specified as an Inclusion term and Postviral fatigue syndrome listed under Synonyms to the Chronic Fatigue Syndrome Title entity. Therefore, all three terms were accounted for within the Beta draft; the terms were then removed from the public version of the Beta draft.

Currently, no entry for any of the terms, CFS, BME or PVFS, under any hierarchy, can be found within any chapter of ICD-11 Beta in the Foundation or the Morbidity and Mortality linearization, the top level category list, the PDF print version or the PDF Alphabetical Index.

The replies that WHO Twitter admin gave to members of the public who enquired about this, stated that there was no proposal to include ME, CFS or Fybromyalgia as Mental and behavioural disorders in ICD-11. They did not say (as Parliamentary Under-Secretary of State for Health, Jane Ellison MP stated in response to a question from Annette Brooke MP) “no proposal to reclassify ME/CFS in ICD-11 ”(¹ Hansard, House of Commons, Oral Answers to Questions, Tuesday, February 25, 2014).

A member of the public also asked on Twitter if there is a proposal to reclassify ME, CFS and Fybromyalgia as “Bodily Distress Disorders” in ICD-11, but no reply was forthcoming from WHO Twitter Admin. Also, they did not confirm a proposal to ‘retain’ in Chapter 07, only not to include in Chapter 05.

Points of clarification requested

1. Under which chapters and parent categories are the following three ICD-10 G93.3 entities currently proposed to be classified within ICD-11:

Chronic Fatigue Syndrome;
Benign Myalgic encephalomyelitis;
Postviral fatigue syndrome?

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?

4. When does ICD-11 Revision intend to restore these three terms to the public version of the Beta drafting platform?

We very much appreciate you taking the time to respond to our request and look forward to hearing from you.

Yours sincerely

Sonya Chowdhury, CEO, Action for M.E.; Secretariat, All Party Parliamentary Group on M.E.
Annette Brook MP; Chair, All Party Parliamentary Group on M.E.
Countess of Mar; Forward M.E., House of Lords
Dr Charles Shepherd, Medical Adviser, ME Association; Secretariat, All Party Parliamentary Group on M.E.

c.c.Tarun Dua, Managing Editor, Neurology Topic Advisory Group, WHO
Christopher Chute, Chair, ICD Revision Steering Group, WHO
Dr Geoffrey Rees [sic], Project Manager, Mental & Behavioural Chapter, ICD-11, WHO
Dr Margaret Chan, Director General, WHO
Dr Robert Jakob, MD, Medical Adviser, WHO

Action for M.E.
PO Box 2778
Bristol BS1 9DJ

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

Post #300 Shortlink: http://wp.me/pKrrB-3Pa

This post is an update to Post #297: Oral Response to Oral Question tabled by Annette Brooke MP, House of Commons, February 25, 2014

On February 26, I submitted a formal query to the office for Ministerial Correspondence and Public Enquiries, Department of Health.

Query Ref: DE00000844965

Re: Answer by The Parliamentary Under-Secretary of State for Health (Jane Ellison) in response to Oral Question, February 25, 2014 House of Commons

11. Annette Brooke (Mid Dorset and North Poole) (LD) ME/CFS

The Parliamentary Under-Secretary of State for Health (Jane Ellison) Oral Response included the statement:

“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.”

I should be grateful if you could clarify the source for the WHO public statement which informed Ms Ellison’s response to Annette Brooke.

Suzy Chapman
etc

On March 17, I received a response:

As posted on @dxrevisionwatch via TwitLonger: http://tl.gd/n_1s1115s

Mr Patel includes links for two Twitter responses to members of the public. One from @WHO admin (unsigned) and the second from Mr Gregory Härtl, Head of Public Relations/Social Media at WHO.

Mr Härtl had responded to a posting of a link to a since closed petition. Mr Härtl’s response needs to be read in the context of the tweet to which he had responded, so although it is useful to have confirmation of a second signed source (from WHO PR/Social Media), it cannot be used as a “stand alone” public statement. If reposting please repost in full, unedited, and with this preamble.

Response: Ref: DE00000844965 – Re: February 25, 2014 Oral Questions, House of Commons, Annette Brooke (Mid Dorset and North Poole) (LD)

Received: March 17, 2014

Thank you for your recent emails to Jane Ellison and the Department of Health about the classification of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME). I have been asked to reply. Please accept this as a response to both of your emails.

The Department understands that this issue is a complex and emotive issue, and that it is of concern to many people.

The World Health Organization’s (WHO’s) public statement was made on Twitter, where it stated that ‘Fibromyalgia and ME/CFS are not included as Mental & Behavioural Disorders in ICD-10, [and that] there is no proposal to do so for ICD-11’. The message can be viewed at the following link:

In addition, on 14 February, Mr Gregory Hartl, Head of Public Relations/Social Media at WHO, stated that ‘there is and never was any intention to [reclassify Fibromyalgia and ME/CFS as a Mental and Behavioural Disorder]’. The relevant message, and its context, can be seen at:

Finally, you may wish to participate in the development of the eleventh version of WHO’s International Classification of Diseases (ICD). Information about becoming involved in the revision to the ICD is available on the following page:

http://www.who.int/classifications/icd/revision/en/

I hope this reply is helpful.

Yours sincerely,

Rahul Patel
Ministerial Correspondence and Public Enquiries
Department of Health

Gregory Härtl, Head of Public Relations/Social Media at WHO, response to member of public via Twitter:

Gregory_Hartl_WHO_PR

Proposals and evidence for the ICD-11 classification of Bodily Distress Disorders: WHO ICD-11 Symposium IV, WPA XVI World Congress, Madrid

Post #299 Shortlink: http://wp.me/pKrrB-3Oe

Update at March 16, 2014: I am advised that Justice For Karina Hansen on Facebook has added a note of correction to its Facebook post.

BDD 240214

Image source: Chapter 06: Bodily distress disorder > Somatization disorder, ICD-11 Beta drafting platform at March 17, 2014

I am still seeing considerable confusion, misunderstanding and misreporting around what can and what cannot be determined from the public version of the ICD-11 Beta drafting platform on emerging proposals for revision of ICD-10′s Somatoform disorders.

Two recent examples: a media report (since pulled) and an incorrect statement posted by an admin for the Justice For Karina Hansen Facebook page:

“We are sad to share that bodily distress syndrome has made it one step closer to being part of the ICD. It appeared january 29th on ICD-11 Beta Drafting Platform…”

No. It didn’t.

The term Bodily distress syndrome does not appear in the public version of the ICD-11 Beta drafting platform.

The term entered into the Beta draft is Bodily distress disorder.

Bodily distress disorder did not appear in the Beta draft on January 29. It was entered into the draft, two years ago, in February 2012.

January 29 is the date on which I reported that an ICD-11 “Short Definition” had recently been inserted for the (long-standing) entry for a proposed Bodily distress disorder category.

If you have already written about proposals for the revision of the Somatoform disorders in the context of the ICD-11 Beta drafting platform or if you are planning to write, please read this post.

If writing about complex classificatory revision processes, I suggest you first familiarize yourself with how the several ICD-11 Beta drafting platform linearizations function and interrelate; that you inform yourself about the proposals of both ICD-11 working groups charged with making recommendations for potential revision of the ICD-10 Somatoform disorders, including obtaining and scrutinizing key journal papers, reports or presentations on emerging proposals published by members of both working groups; and that for comparison, you have an understanding of the existing F45 Somatoform disorders framework and the disorder descriptions and criteria for categories located within this section of ICD-10, in order that you can provide evidenced based, accurate and up to date information and analysis, within the limitations of what information is public domain.

Reiteration of misinformation and inaccurate reporting on blogs, websites and social media platforms helps no-one. It delegitimizes patient and carer concerns; it undermines the work of advocates committed to providing accurate, referenced and timely information; it panics patients and provokes knee jerk “activism” and “slacktivism.”

And if you are shrugging and thinking Ho, hum, the (undefined) term, Bodily distress disorder and Fink et al’s (operationalized) Bodily Distress Syndrome are sometimes used interchangeably outside of ICD-11, so… ICD-11′s proposed flavour of BDD must mean that a similar disorder model to Fink’s BDS is intended in the Beta draft, read on…

Please note that it is not within the scope of this post to review or discuss the implications for retaining the ICD-10 status quo for ICD-11, or for adopting SSD-like or BDS-like constructs (or any variations on all three) – but to set out what can and what cannot safely be determined from the Beta draft and associated literature.

+++
Key points for this report:

• In September, Oye Gureje, who chairs the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders, will be presenting on “Proposals and evidence for the ICD-11 classification of Bodily Distress Disorders” as part of a series of ICD-11 Symposia at the World Psychiatric Association’s XVI World Congress, in Madrid.

• There are two working groups advising ICD-11 on the revision of ICD-10′s Somatoform disorders

The Primary Care Consultation Group (PCCG);

The ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG).

• In 2012, the PCCG published a paper proposing a new disorder construct to replace ICD-10-PHC’s F45 “Unexplained somatic symptoms/medically unexplained symptoms” which the group proposed to call Bodily stress syndrome (BSS) [1]. 

F48 Neurasthenia was also proposed to be eliminated for the ICD-11-PHC.

• In 2012, the PCCG’s Bodily stress syndrome category was proposed to sit under a new Mental and behavioural disorder grouping called Body distress disorders, under which were grouped three other, unrelated disorders, like so:

Extract: Goldberg DP. Comparison Between ICD and DSM Diagnostic Systems for Mental Disorders. In: Sorel E, (Ed.) 21st Century Global Mental Health. Jones & Bartlett Learning, 2012: 37-53 [Free PDF, Sample Chapter Two] [2]

Page 51, Table 2.5 The 28 Disorders Proposed for ICD11-PHC (the abridged Primary Care version of ICD-11)

Body distress disorders

15 Bodily stress syndrome [Replaces F45 Unexplained somatic symptoms/medically unexplained symptoms]
16 Acute stress reaction
17 Dissociative disorder
18 Self-harm

[F48 Neurasthenia proposed to be eliminated for ICD11-PHC]

So the PCCG group were proposing the use of a new term, Body [sic] distress disorders, as a disorder group name for a number of unrelated ICD-11-PHC primary care disorders, whilst proposing the term Bodily stress syndrome as a new ICD-11-PHC disorder category listed under that group.

[Leaving aside the issue of the current lack of evidence for the validity, reliability and utility of the BSS construct, this presents providers, payers, coders and patients with potentially confusing terminology. Given there is already an operationalized definition and criteria for Bodily Distress Syndrome, WHO classification experts should have qualms about the potential for confusion between disorder group names and disorder category names, and between proposed disorder names that sound similar to, but which may lack conceptual congruency with similarly named disorders for which definitions and criteria have already been published and which are already in limited use in research and clinical settings.]

• In 2012, the PCCG’s tentative new BSS disorder drew heavily on Fink et al’s Bodily Distress Syndrome’s (BDS) construct and criteria. Based on physical symptom clusters or patterns from various body systems and (theoretically) on the autonomic arousal or “over-arousal” illness model.

Though not explicit, BSS appeared to have the capacity for capturing the so-called functional somatic syndromes; and in common with BDS, if the symptoms “were better accounted for by a known physical disease this is not BSS.”

But the tentative BSS criteria also featured some DSM-5 SSD-like psychobehavioural characteristics, which do not form part of Fink et al’s BDS criteria. There were other, minor criteria discrepancies between BSS and BDS.

• In 2012, the second working group, the S3DWG, also published a paper presenting a new disorder construct which they proposed to call Bodily distress disorder (BDD) [3]. Again, a similar term to one already in use.

The S3DWG group proposed to subsume all of the ICD-10 Somatoform disorders categories of F45.0 – F45.9, plus F48.0 Neurasthenia, under a new, single BDD disorder category, with a number of severity specifiers (initially, Mild, Moderate and Severe).

• But the S3DWG’s emerging BDD construct was quite different to the PCCG group’s BSS. It was characterized by a simplified criteria set based on excessive preoccupation and psychobehavioural responses to single or multiple, non specific bodily symptoms. The BDD construct shared characteristics with DSM-5′s Somatic symptom disorder (SSD) – not with Fink et al’s BDS.

• In common with DSM-5′s SSD, the BDD diagnosis eliminated the “unreliable assumption of causality” and did not exclude the presence of a co-occurring physical health condition. BDD, as described in the 2012 Gureje, Creed paper, and Fink et al’s BDS are divergent constructs.

• So by late 2012, there were two sets of recommendations – BSS, drawing heavily on Fink’s BDS model, but with a nod towards DSM-5′s SSD, and BDD – with notable similarity to DSM-5′s SSD.

• In early 2012, the disorder name entered into the ICD-11 Beta drafting platform was Bodily distress disorder, (not Bodily stress syndrome or Bodily Distress Syndrome). No Definition for BDD was added at the time.

• In early 2014, a Definition for Bodily distress disorder was inserted into the Beta drafting platform. The Definition wording was drawn from the Gureje, Creed (S3DWG) 2012 BDD paper, which had described an SSD-like disorder construct.

• There is currently insufficient evidence in the Beta drafting platform to assert that, in the context of ICD-11 Beta drafting platform, BDD is being defined as a BDS-like construct. The defining BDD characteristics: 

high levels of preoccupation regarding bodily symptoms;
unusually frequent or persistent medical help-seeking;
avoidance of normal activities for fear of damaging the body;

are psychological and behavioural responses. Psychological and behavioural responses are not required for Fink et al’s BDS and these characteristics have greater congruency with DSM-5 SSD’s “B type”criteria. There is no evident requirement for symptom patterns or clusters from one or more body systems, as required to meet BDS criteria; examples of BDD symptoms are non specific and patients may be “preoccupied with any bodily symptoms.”

From the limited content displaying in the Beta draft, it simply isn’t possible to determine that BDD, in the context of ICD-11 Beta draft usage, is being defined as a Fink et al BDS-like disorder construct.

An additional layer of complexity: recently, the BDD severity specifier “Severe bodily distress disorder” has been removed from the draft and ICD-10′s Somatization disorder reinserted. Neurasthenia, previously proposed by both groups to be eliminated or subsumed for ICD-11, has also been inserted back into the Mental and behavioural disorders chapter, which is (currently numbered Chapter 06).

Neurasthenia240214

Image source: Chapter 06: Neurasthenia, ICD-11 Beta drafting platform at March 17, 2014

The Definition assigned to Somatization disorder remains unrevised from legacy text recently imported, unedited, from ICD-10. It is currently unclear how Somatization disorder and Neurasthenia are now intended to integrate within the core ICD-11 and the ICD-11 Primary Care framework, given that a new, single disorder construct had earlier been proposed by both groups to subsume Somatization disorder and all of the ICD-10 Somatoform Disorders categories between F45.0 – F45.9, and to subsume F48.0 Neurasthenia.

No other F45.x categories have been restored to the Beta draft. (There is a reference in the legacy Definition for Somatization disorder to F45.1 Undifferentiated somatoform disorder but this text has yet to be edited from the text as it had stood under ICD-10′s Somatoform disorders framework.) 

• The development of a replacement for the ICD-10 Somatoform Disorders is a work in progress and proposals may go through several iterations over the next two or three years. The two groups may or may not be striving to reach consensus. The construct favoured by ICD-11 Revision Steering Group may or may not be the construct that is put out for initial field testing.

• Without full disorder descriptions, criteria, inclusions, exclusions, differential diagnoses etc, there is currently insufficient content in the Beta drafting platform to determine the precise nature of whatever construct and criteria is currently favoured by ICD-11 Revision Steering Group; or whether the two groups have reached consensus over a new disorder name and concept; or whether and to what extent the groups’ two (divergent) constructs have been revised since publication of their respective 2012 papers.

Possibly the ICD-11 Symposium IV presentation, later this year, in Madrid, may elucidate. If there is a transcript, summary report or presentation slides of Dr Oye Gureje’s presentation to the World Psychiatric Association XVI World Congress in September, I will post presentation materials, when available. There are some additional notes below the WPA XVI World Congress details.

+++

The World Psychiatric Association’s XVI World Congress of Psychiatry will be held in Madrid, on September 14–18, 2014.

XVI World Congress of Psychiatry website: http://www.wpamadrid2014.com/

There will be a number of Symposia dedicated to the development of ICD-11

Scientific Programme

Topic 10. Diagnostic Systems (Updated)

Proposals Diagnostic Systems

Extracts:

Page 2:

000464 WHO ICD-11 Symposium I: An overview of the World Health Organization’s development of the ICD-11 classification of mental and behavioural disorders

000466: WHO ICD-11 Symposium III: Proposals and Evidence for ICD-11 – Neurodevelopmental Disorders, Disruptive Behaviour

000468: WHO ICD-11 Symposium IV: Proposals and Evidence for ICD-11– Schizophrenia Spectrum and Other Primary Psychotic Disorders, Mood Disorders, Anxiety Disorders, and Common Mental Disorders in Primary Care

[...]

Speaker: Goldberg, David P., King’s College London – UK

Proposals and evidence for the ICD-11 classification of mental and behavioural disorders in primary care (ICD-11 PHC)

000469: WHO ICD-11 Symposium V: Proposals and Evidence for ICD-11 – Obsessive-Compulsive and Related Disorders, Disorders Specifically Associated with Stress, Bodily Distress Disorders, and Dissociative Disorders

[...]

Speaker: Gureje, Oye, University of Idaban – NG

Proposals and evidence for the ICD-11 classification of Bodily Distress Disorders

Notes:

The ICD-11 Primary Care Consultation Group:

The 12 member PCCG leads the development and field testing of the revision of all 28 mental and behavioural disorders proposed for inclusion in the next ICD primary care classification (ICD-11-PHC), an abridged version of the core ICD-11 classification. Per Fink’s colleague, Marianne Rosendal, is a member of the PCCG group.

The members of the PCCG are: SWC Chan, AC Dowell, S Fortes, L Gask, D Goldberg (Chair), KS Jacob, M Klinkman (Vice Chair), TP Lam, JK Mbatia, FA Minhas, G Reed, and M Rosendal.

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

The PCCG’s 2012 paper on emerging proposals for BSS and international focus group responses to these tentative proposals can be accessed for free here:

http://fampra.oxfordjournals.org/content/30/1/76.long

http://fampra.oxfordjournals.org/content/30/1/76.full.pdf+html

+++
The ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders:

The second sub working group advising on the revision of ICD-10′s Somatoform Disorders is the 17 member Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG).

The S3DWG is chaired by Prof Oye Gureje. DSM-5 Somatic Symptom Disorder (SSD) work group member, Prof Francis Creed, is a member of this group. Other than Athula Sumathipala, MD, PhD (UK) and Joan E. Broderick, PhD (Stony Brook University, NY) all other members of this sub working group have yet to be identified. Their names are not listed in the Gureje, Creed 2012 paper [3] and a list of members is not available from the ICD Revision website.

The term entered into the Beta draft is Bodily distress disorder not Bodily stress syndrome or Bodily Distress Syndrome.

Current Definition for Bodily distress disorder, as displaying in the Beta draft at March 16, 2014:

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).

This BDD 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 [3]. Unfortunately this journal paper remains behind a paywall but I do have a copy.

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.”

This is not a BDS model – it’s a disorder framework into which DSM-5′s “Somatic Symptom Disorder” (SSD) could comfortably be integrated, thus smoothing harmonization between ICD-11 and DSM-5.

(If you want to compare the extent to which the BDS construct and criteria diverges from DSM-5′s SSD construct and criteria, see my graphic here.)

For the S3DWG’s emerging proposals for BDD, as presented in late 2012, there was no evident requirement for specific symptom counts, or for BDS-like symptom clusters from one or more body systems. Examples of symptoms are non specific and patients may be “preoccupied with any bodily symptoms.”

As with DSM-5′s SSD, the focus was not on the number of symptoms, or on symptom patterns or clusters from one or more body systems, or whether symptoms were determined as “medically explained” or “medically unexplained” or of undetermined aetiology, but on the perception of “disproportionate” and “maladaptive” responses to, or “excessive” preoccupation with any troublesome chronic bodily symptom(s).

So in 2012, the two groups lacked agreement not only over what to call any new, single disorder replacement for ICD-10′s Somatoform disorders, but also on what disorder construct and criteria should be recommended to ICD Revision.

Given that the wording of the Definition for Bodily distress disorder as entered into the draft, in January, is based on text from the Gureje, Creed 2012 paper, which had described an SSD-like construct, one might argue that the disorder name and Definition currently displaying in the draft potentially better describes an SSD-like construct – not Fink et al’s BDS.

And with the recent reintroduction into the Beta drafting platform of Somatization disorder and Neurasthenia, one might further argue that there is perhaps a recent consideration for a construct that doesn’t veer too far away from the status quo, which could be moulded to accommodate selected of the ICD-10 legacy Somatoform disorders categories, but which removes the requirement for symptoms to be “medically unexplained” in order that SSD might be shoehorned into an ICD-11 framework for “harmonization” with DSM-5.

But at the moment and in the absence of documentary evidence or clarification by WHO/ICD Revision, what cannot safely be said is that in the context of ICD-11 usage, Bodily distress disorder equates with Fink et al’s Bodily Distress Syndrome.

Caveats: The ICD-11 Beta drafting platform is not a static document: as a work in progress over the next two to three years, it is subject to daily edits and revisions, to field test evaluation and to approval by Topic Advisory Group (TAG) Managing Editors, ICD Revision Steering Group and WHO classification experts.

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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].
Abstract: http://www.ncbi.nlm.nih.gov/pubmed/22843638
Full free text: http://fampra.oxfordjournals.org/content/30/1/76.long
PDF: http://fampra.oxfordjournals.org/content/30/1/76.full.pdf+html

2. Goldberg DP. Comparison Between ICD and DSM Diagnostic Systems for Mental Disorders. In: Sorel E, (Ed.) 21st Century Global Mental Health. Jones & Bartlett Learning, 2012: 37-53 [Free PDF, Sample Chapter Two] http://samples.jbpub.com/9781449627874/Chapter2.pdf

3. 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 [Abstract only. Full text behind paywall]

4. 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

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.

+++
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.

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