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 Chowdhury, 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

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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

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

+++

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

+++
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

+++

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:

+++
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.

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.)

+++
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.

+++

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?

+++
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)

ICD-11 Round up: April #1

ICD-11 Round up: April #1

Post #239 Shortlink: http://wp.me/pKrrB-2Qy

[PMID 23583019]

The Lancet, Early Online Publication, 11 April 2013
doi:10.1016/S0140-6736(12)62191-6

Proposals for mental disorders specifically associated with stress in the International Classification of Diseases-11

Maercker A, Brewin CR, Bryant RA, Cloitre M, Reed GM, Ommeren MV, Humayun A, Jones LM, Kagee SA, Llosa AE, Rousseau C, Somasundaram DJ, Souza R, Suzuki Y, Weissbecker I, Wessely SC, First MB, Saxena S.

Mental disorders specifically associated with stress are exceptional in needing external events to have caused psychiatric symptoms for a diagnosis to be made. The specialty of stress-associated disorders is characterised by lively debates, including about the extent to which human suffering should be medicalised, 1 and the purported overuse of the diagnosis of post-traumatic stress disorder (PTSD). 2 Most common mental disorders are potentiated or exacerbated by stress and childhood adversity…

Contributors
AM, CRB, RAB, MC, GMR, MvO, SW, MBF, and SS were the core writing group. AH, LJ, SAK, AEL, CR, DS, RS, YS, and IW discussed the text and gave feedback to the core writing group.
Conflicts of interest
AM, CRB, RAB, MC, AH, LJ, SAK, CR, DS, SCW, and YS are members of the WHO ICD-11 Working Group on the Classification of Disorders Specifically Associated with Stress, reporting to the WHO International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders. GMR, MvO, and SS are members of the WHO Secretariat, Department of Mental Health and Substance Abuse. AEL, RS, IW, and MBF are special invitees to Working Group meetings. However, the views expressed in this article are those of the authors and, except as specifically noted, do not represent the official policies or positions of the International Advisory Group or WHO.
[Subscription required for full paper. A PDF may be available on authors’ personal websites or academic websites.]

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According to CDC’s, Donna Picket, as reported by AHIMA (American Health Information Management Association), “ICD-11 would likely not be ready for implementation in the US until after 2020.”

AHIMA

Update: ICD-11 on Track For 2015

Melanie Endicott | AHIMA & ICD-10 & ICD-10/CAC Summit | April 23, 2013

While the United States is preparing to implement ICD-10-CM/PCS on October 1, 2014, the World Health Organization (WHO) is anticipating a 2015 release of ICD-11. Taking into account the need to then clinically modify the WHO version, ICD-11 would likely not be ready for implementation in the US until after 2020. Donna Pickett, MPH, RHIA, medical systems administrator at Centers for Disease Control and Prevention/National Center for Health Statistics, delivered an update on the progress of ICD-11 development in Monday’s presentation “ICD-11 Update” at the 2013 AHIMA ICD-10-CM/PCS and Computer-Assisted Coding Summit, taking place in Baltimore, MD this week...  Read on

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Go here to view ICD-11 Beta drafting platform public version

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

ICD-11 Beta: Expectations, Concerns and Known Issues

Information for Beta Participants

ICD-11 Beta Phase started on 14 May 2012. The objective is to have a final ICD-11 version by 2015. This announcement clarifies that ICD-11 Beta version is not final, and will be enhanced by input from multiple stakeholders during the beta phase, which will last 3 years.

Caveats
Problems and Issues
Concerns and Criticisms etc

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

Revision

Participate in ICD Revision
Video invitation to participate
Frequently Asked Questions About ICD-11
ICD Information Sheet
ICD Revision Information Notes
Register to become involved
Timelines
Content Model
Definitions etc

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Presentation | T Bedirhan Üstün

ICD Revision Summary presentation: Quality and Safety Topic Advisory Group meeting, New York, April 2-3, 2013.

ICD11 Quality and Safety TAG 2013 Presentation | Slideshare

According to this presentation, by WHO’s Bedirhan Üstün, all ICD-11 Topic Advisory Groups (TAGs) have finished their editing of the structure. A good deal of work remains for the population of content, in accordance with the ICD-11 Content Model, across all chapters and on compatibility of linearizations across primary care, specialty and detailed research versions.

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Presentation [PDF Format, no PP viewer required]

Revising the ICD Definition of Intellectual Disability: Implications and Recommendations | March 19, 2013

Intellectual Disability’s Long Journey: George Jesien, Ph.D., Executive Director, Association for University Centers on Disabilities (AUCD)
Intellectual Disability and the Revision of ICD-10 Mental and Behavioural Disorders: Geoffrey M. Reed, Department of Mental Health and Substance Abuse, WHO
AAIDD Proposed Recommendations for ICD-11: Marc J. Tassé, Nisonger Center – UCEDD, The Ohio State University, Webinar

On Slides 17 and 18, Classification System Most Used and Classification Most Used by Country, graphics for data from WPA-WHO Survey of Practicing Psychiatrists* on global use of ICD-10, ICD-8/9, DSM-IV and Other diagnostic system(s).

*World Psychiatry. 2011 Jun;10(2):118-31.

The WPA-WHO Global Survey of Psychiatrists’ Attitudes Towards Mental Disorders Classification.

Reed GM, Mendonça Correia J, Esparza P, Saxena S, Maj M.

Abstract

Full free paper

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Medscape

Schizophrenia Bulletin

Schizophr Bull.2012;38(5):895-898.

Status of Psychotic Disorders in ICD-11

Wolfgang Gaebel

Abstract and full report

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