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

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

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

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

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

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

doi: 10.1212/WNL.0000000000001063

Full free text:

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

Full free PDF:

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

 

As previously posted:

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

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

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

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

 

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

 

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

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

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

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

Neurology Topic Advisory Group (TAG) sub working groups:

Neurology TAG sub working groups

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

 

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

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

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

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

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

 

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

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

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

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

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

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

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

The Definition field was now blanked.

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

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

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

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

 

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

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

July2512

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

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

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

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

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

 

What clarifications have been given?

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

 

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

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

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

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

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

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

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

 

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

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

 

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

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

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

[Addresses redacted]

Your ref:  FoI/14/01460

24 September 2014

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

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

 

Your request

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

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

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

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

Postviral fatigue syndrome (Post viral fatigue syndrome; PVFS)

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

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

During the period:

1] January 1, 2013 – December 31, 2013

2] January 1, 2014 – July 31, 2014

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

 

Response to your  request

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

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

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

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

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

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

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

 

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

 

What might the working group potentially be considering? 

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

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

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

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

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

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

 

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

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

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

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

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

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

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

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

 

There remain 6 important questions to be answered:

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

 

Extract, ICD-11 document Known Concerns and Criticisms:

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

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

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

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

 

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

 

References for Part 2

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

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

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

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

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

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

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

Post #315 Shortlink: http://wp.me/pKrrB-40E

 

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

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

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

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

 

Part 1: Status of the ICD-11 development process

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

Part 3: Status of proposals for the revision of ICD-10’s Somatoform disorders for the core and primary care versions of ICD-11

 

Part 1: Status of the ICD-11 development process

The revision of ICD-10 and development of the structure for ICD-11 began in April 2007.

ICD-11 was originally planned for completion by 2012, but the timeline was extended to 2015 early in the development process.

In January 2014, WHO/ICD Revision extended the timeline by a further two years to allow more time for generation of content, peer review, field testing and evaluation, translations and transition preparations [1].

The current projected date for approval by the World Health Assembly (WHA) is May 2017 with implementation timelined for 2018+.

In July 2014, WHO issued a call for expressions of interest in a contract for an external interim assessment of the revision process. Due date for the assessment report is December 15, 2014. It is not known whether WHO intends to publish a summary of the external assessment report.

Once ICD-11 is ready for dissemination, WHO Member States will transition to the new edition at their own pace. There is no WHO mandated date by which ICD-11 must be implemented, but WHO has said that it won’t support the annual updating of ICD-10 indefinitely. Developing and low resource countries may take many years before migrating to ICD-11.

 

Print and electronic versions

The scope of the revision project is ambitious and technically very complex. The project is under-resourced and underfunded and there is no overall project manager. Work groups have complained about the burden of work and poor internal communications.

There will be an ICD-11 print edition and a more expansive computerized version planned to be integrable with the international SNOMED CT terminology system.

The electronic version has a Foundation Component which includes all the ICD-11 diagnostic categories arranged in hierarchical “trees.”

From the Foundation Component, subsets (known as “linearizations”) are derived that contain mutually exclusive lists of terms for different purposes, e.g. for mortality, morbidity or primary care.

There are anticipated to be linearizations for mental and behavioural disorders, low resource and high resource primary care settings, rare diseases and occupational health and speciality classifications, including neurology, paediatrics, ophthalmology and dermatology.

The public version of the Beta drafting platform currently displays only the Foundation Component and a Joint Linearization for Mortality and Morbidity Statistics.

The country specific “Clinical Modifications” of ICD-10, including the U.S.’s forthcoming ICD-10-CM, are expected to be incorporated into ICD-11, as linearizations, as is ICPC-2.

The development process is overseen by a Revision Steering Group (RSG) chaired by biomedical informatics expert, Christopher Chute, MD, Mayo Clinic, Rochester, MN [2].

 

Primary Care version

ICD-10 PHC (sometimes written as ICD-10-PHC or ICD10-PHC or ICD-10 PC), is a simplified version of the WHO’s ICD-10 chapter for mental and behavioural disorders for use in general practice and primary health care settings. This system has rough but not exact equivalence to mental disorders in the core ICD-10 classification.

The ICD-10 PHC describes 25 disorders commonly managed within primary care as opposed to circa 450 classified within Chapter V of ICD-10.

An revised version, known as ICD-11 PHC, is being developed simultaneously with the core version.

The ICD-11 Primary Care Consultation Group, chaired by Prof Sir David Goldberg, is charged with the revision of the 26 mental and behavioural disorders in ICD-10 PHC. The 28 mental disorders proposed for the new primary care edition (ICD-11 PHC) will require an equivalent category within the core ICD-11 version [5].

 

Work Groups

Over 20 work groups have been assembled since 2007 reporting to the RSG. These are known as Topic Advisory Groups (TAGs). Professional and scientific organisations also have representatives on the TAGs [3].

TAG Managing Editors may also recruit external reviewers for reviewing proposals and textual content. Terms of Reference for TAGs and work groups can be viewed in reference [4].

Reporting to the TAGs are sub working groups charged with making recommendations for specific chapter sections. TAG membership lists are available from the WHO site but the names of sub working group members and external reviewers are not posted.

The Work Groups with most relevance for the ICD-10 G93.3 categories are:

TAG Neurology (Diseases of the nervous system) Chair: Prof Raad Shakir, Managing editor: Tarun Dua, WHO.

TAG Mental Health (Mental and behavioural disorders) Co-Chairs: Geoffrey Reed, PhD, WHO; Steven Hyman, MD, Harvard University.

ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (S3DWG) Chair: Prof Oye Gureje. A sub working group to TAG Mental Health. Prof emeritus, Francis Creed, is a member. This group is said to have 17 members but apart from two others, I have been unable to establish the full membership list.

ICD-11 Primary Care Consultation Group (PCCG) Chair: Prof Sir David Goldberg, Vice-chair: Prof Michael Klinkman (U.S.). Per Fink’s research collaborator, Marianne Rosendal, is a member of the 12 person, PCCG. The full member list has been published in a journal paper [5] but is not posted on the WHO website.

 

Differences between ICD-10 and ICD-11

There are significant differences between the structure of ICD-10 and ICD-11: more chapters (currently 26 against ICD-10’s 22); reordering of chapters; restructuring of disease classes and parent/child hierarchies within chapters; renaming of some terms; relocation of some terms to other existing chapters or to new chapters; multiple linearizations; more descriptive content; a new system of code numbers.

Disease terms with an equivalent ICD-10 term are back referenced to their legacy terms and codes in the electronic platform for ICD-10 Version: 2010 [6].

 

Multiple parents and multisystem diseases

For ICD-10 Tabular List, an ICD entity (a parent class, title term or inclusion term) can appear in only one place within the classification.

For ICD-11, multiple parentage is permissible. In the Foundation Component, disorder or disease terms can appear under more than one hierarchical parent [7].

Diseases that straddle two chapters, like malignant neoplasms of the skin, can now be viewed under Diseases of the skin as well as cross-linking to the Neoplasms chapter. Premenstrual Dysphoric Disorder (PMDD), proposed for inclusion in ICD-11, is listed under both Depressive disorders, in the Mental and behavioural disorders chapter, and also under Premenstrual tension syndrome under new chapter, Conditions related to sexual health.

So the ICD-10 concept of discrete chapter location is being dispensed with for ICD-11.

In 2010, the Revision Steering Group posted a discussion paper on the potential for incorporating a new chapter into ICD-11 for Multisystem diseases, but this proposal has been rejected [8].

In 2013, consideration was being given, instead, for generating a multisystem diseases linearization – as a virtual chapter – compiled from the Foundation Component that lists all ICD disorders and diseases, but there would be no separate Multisystem diseases chapter within the print version [9].

It isn’t known whether a decision has been reached but there is currently no ability to generate a multisystem diseases linearization from the Foundation Component, at least not within the public version of the Beta drafting platform.

How to represent multisystem diseases within ICD-11 (and the potential for an ICD category term to be assigned to multiple parents) could have implications for classification of one or more of the three ICD-10 G93.3 terms.

 

The Content Model

Another major difference between ICD-10 and ICD-11 is the Content Model. For ICD-11, all uniquely coded ICD Title terms (but not their Inclusion terms or Synonyms) are intended to have Definitions and in some cases, other descriptive content populated [10]. Whereas category terms located in ICD-10 chapters other than Chapter V: Mental and behavioural disorders were listed, to quote WHO’s, Bedirhan Üstün, like a laundry list, with no descriptive content.

 

Outside of the WHO classification experts, the RSG, the working groups, sub working groups and their external advisers who else is inputting into the development process?

In 2009, ICD Revision Steering Group began inviting professional bodies and Royal Colleges to submit proposals for revisions to the ICD structure and content for ICD-11.

WHO has also set up a Global Clinical Practice Network (GCPN), an international network of over 11,000 mental health and primary care professionals [11].

Calls have gone out for various classes of professional stakeholder to register with the public version of the Beta draft to participate in the revision process:

Medicine; Nursing; Midwifery; Dentistry; Pharmacy; Health information management (coding, medical records); Environmental and occupational health and hygiene; Physiotherapy or Physical therapy; Nutrition; Social Sciences; Psychology; Social work and counseling; Epidemiology; Health Policy; Traditional and complementary medicine.

A pre-final draft for ICD-11 is expected to be released for public comment at some point in 2015/16, but no firm date for this has been announced.

 

How can stakeholders participate?

Professional stakeholders and others who register an interest are able to interact with the Beta drafting platform and access additional content, e.g. PDFs of the print versions and Index.

The public version of the Beta drafting platform can be viewed without registration but comments submitted by registered stakeholders are not visible to non registered viewers.

Comments and suggestions are screened and forwarded to the appropriate TAG Managing editors for review. Occasionally, a TAG Managing editor or one of the ICD Revision staff will respond to a proposal or a request for correction via the comments facility.

Registered stakeholders are permitted to:

• Add comments on and read other stakeholder comments on concepts; title terms; synonyms; inclusion terms; exclusions and other Content Model parameter terms;
• Comment on whether a category is in the right place;
• Comment on whether the category is useful for Primary Care; Research; Clinical;
• Suggest definitions (with sources) for a disease or disorder and comment on already populated draft definitions;
• Make proposals to change ICD categories, supported with references;
• Offer to participate in field trials (for professionals only);
• Offer to assist in translating ICD into other languages

Stakeholders can register for participation here: http://www.who.int/classifications/icd/revision/en/

Video inviting professional and stakeholder participation here: http://www.who.int/classifications/icd/revision/video/en/

The Beta platform is intended for considered and collegiate input – not as a platform for campaigning or activism.

Some patient advocacy organisations, for example, gender and trans* groups, have been holding face to face meetings with ICD Revision personnel at conferences or other venues to inform the revision process and represent their constituencies’ interests.

A new Proposals mechanism was launched on the public Beta draft in July 2014. This is a more sophisticated system through which registered users can submit proposals, supported with rationales and references, for changes/additions/deletions to proposed ICD-11 entities.

Proposals guide: http://apps.who.int/classifications/icd11/browse/Help/Get/proposal_main/en

 

Where to view the Beta drafting platform

ICD Revision and TAG Managing editors are developing the Beta draft on a separate electronic multi-authoring platform, known as the iCAT, on a server which is not accessible to the public.

The iCAT Beta platform is more layered than the Beta version which the public sees: it displays a larger number of “Content Model” parameters; there are tabs for tracking “Change Histories” and “Category Notes and Discussions” for comparing earlier iterations of a specific chapter section with the most recent edits. There are sub lists for terms that are proposed to be retired or for which decisions are needing to be made.

The public version of the Beta has no means through which changes to the draft (and rationales for changes) can be tracked, or for comparing, for example, an earlier edit of a specific chapter section with the most recent content.

The inability to monitor editing histories in the public Beta draft and the absence of progress reports from the work groups adds to confusion around interpretation of the Beta content. The draft is updated daily, so it needs checking every day for relevant changes.

You can view the public version of the Beta drafting platform here:
http://apps.who.int/classifications/icd11/browse/f/en

Foundation Component (the entire ICD universe):
http://apps.who.int/classifications/icd11/browse/f/en#/

Joint Linearization for Mortality and Morbidity Statistics:
http://apps.who.int/classifications/icd11/browse/l-m/en#/

User Guide: http://apps.who.int/classifications/icd11/browse/Help/en

 

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

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

The display panel on the right contains the “Content Model” text: Short and Long Definitions, Inclusion terms, Synonyms, Exclusions, Index terms etc. for the selected ICD Title term. Many terms are still awaiting population of Short Definitions (for print version) and Long Definitions (for electronic version), and other descriptive content.

For comparison between the public Beta draft and the iCAT, view this 2 minute iCAT screencast animation (with audio), intended as a demo for ICD Revision editors.

The animation is an .ogv file which should run in recent releases of Firefox but may not load in other browsers. If you don’t have the right program installed to run an .ogv file, the iCAT multi-authoring platform that the TAG editors are using looks like this:

iCAT editing platform 3

 

In Part Two, I shall be setting out what is currently known about proposals for the classification of Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome for ICD-11.

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

 

Part 2: Status of proposals for the classification of PVFS, BME, and CFS in the public version of the ICD-11 Beta drafting platform published September 30, 2014

Part 3: Status of proposals for the revision of ICD-10’s Somatoform disorders for the core and primary care versions of ICD-11 [to follow]

 

References for Part 1

1 Committee for the Coordination of Statistical Activities, Twenty-second Session 4-6 September 2013, Items for discussion and decision: Item 8, provisional agenda, pp 8-10: http://unstats.un.org/unsd/accsub/2013docs-22nd/SA-2013-12-Add1-Health-WHO.pdf

2 http://www.who.int/classifications/icd/RSG/en/

3 http://www.who.int/classifications/icd/TAGs/en/

4 http://www.who.int/entity/classifications/TOR_TAGs_WGs.pdf?ua=1

5 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. Family Practice (2012) 30 (1): 76-87. Free text: http://fampra.oxfordjournals.org/content/30/1/76.full.pdf+html

6 http://apps.who.int/classifications/icd11/browse/f/en#/

7 http://apps.who.int/classifications/icd11/browse/Help/Get/architecture/en

8 https://dxrevisionwatch.files.wordpress.com/2010/10/considerations20on20multisystem_diseases_201008181.doc

9 http://informatics.mayo.edu/WHO/ICD11/collaboratory/attachments/208/19.Multisystem_Diseases_Chapter.v1.2.docx

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

11 http://www.globalclinicalpractice.net/en/

12 Point Skinny on ICD-11

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

Update at May 15, 2014: Somatization disorder, listed as a uniquely coded child category under parent, Bodily distress disorder, has been removed from the Beta draft Linearizations since publishing the update on May 9. Instead, the ICD-10 legacy terms, somatoform disorders and Somatization disorder are both now listed under Synonyms to Bodily distress disorder and also listed as Index Terms. The three severity specifiers for BDD, (Mild, Moderate, Severe) remain.

Neurasthenia, listed as a child category under parent, Mental and behavioural disorders, has been removed from the Linearizations and is not listed in the PDF for the print version of the Alphabetical Index.

Update at May 9, 2014: Three uniquely coded severity specifiers (Mild, Moderate, Severe) have now been added back as child categories to Bodily distress disorder but Somatization disorder remains as a uniquely coded child category to BDD.

As no new posts will be added to the site from April, I leave you with my 12 Point Skinny on ICD-11 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, and 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 additionally confirmed by Mr Gregory Härtl, Head of Public Relations/Social Media, WHO.

3. Other than this position, WHO/ICD Revision has yet to clarify how it does propose to classify PVFS, BME, and CFS within ICD-11, in terms of intentions for specific chapter locations, parent classes (including any proposals to assign any of these terms to multiple parentage), hierarchies, Definitions text and other “Content Model” descriptive parameters.

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

5. Two separate working groups have been appointed by WHO/ICD Revision that are advising on the revision of the Somatoform disorders categories.

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

7. In 2012, the emerging proposals by the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (the Gureje led S3DWG sub working group) for its Bodily distress disorder (BDD) concept had described an SSD-like construct with criteria based on psychobehavioural responses [2].

8. In 2012, the emerging proposals by the PCCG (the Goldberg led ICD-11 Primary Care Consultation Group) presented an alternative Bodily stress syndrome (BSS) construct [3].

This proposal drew heavily on Fink et al’s Bodily Distress Syndrome (BDS) disorder model, requiring symptom patterns from body systems to meet the criteria. But the PCCG proposed to incorporate some SSD-like psychobehavioural responses, which do not form part of Fink’s BDS criteria – attempting a mash-up between two divergent constructs or disorder models [4].

9. The Definition for Bodily distress disorder (BDD) that is inserted into the Beta drafting platform [5] is based on the disorder description wording in the 2012 Gureje, Creed BDD paper, which had described an SSD-like construct [3].

10. BDD had a child category, Severe bodily distress disorder. This is now removed from the public Beta draft. Instead, ICD-10’s Somatization disorder has been restored to the draft linearizations as the child category to parent, Bodily distress disorder. Additionally, ICD-10’s F48.0 Neurasthenia has been restored to the draft, under parent, Mental and behavioural disorders.

Update at May 9, 2014: Three uniquely coded severity specifiers (Mild, Moderate, Severe) have now been added back as child categories to Bodily distress disorder but Somatization disorder remains as a uniquely coded child category to BDD.

In the ICD-11 Beta, it had previously been proposed that seven ICD-10 Somatoform disorders categories (F45.0 – F45.9) plus F48.0 Neurasthenia would be replaced by this single new disorder construct, Bodily distress disorder (BDD) [2].

But how these two (now apparently proposed to be restored) ICD-10 legacy categories, Somatization disorder and Neurasthenia, are currently envisaged to function within a new disorder framework to replace the Somatoform disorders categories remains unclarified.

Update at May 15, 2014: Somatization disorder, listed as a uniquely coded child category under parent, Bodily distress disorder, has been removed from the Beta draft Linearizations since publishing the update on May 9. Instead, the ICD-10 legacy terms, somatoform disorders and Somatization disorder are both now listed under Synonyms to Bodily distress disorder and also listed as Index Terms. The three severity specifiers for BDD, (Mild, Moderate, Severe) remain.

Neurasthenia, listed as a child category under parent, Mental and behavioural disorders, has now been removed from the Linearizations and is not listed in the PDF for the print version of the Alphabetical Index.

11. Without full disorder descriptions, criteria, inclusions, exclusions, differential diagnoses etc. or field test protocol, 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 initial field testing protocol represents the construct favoured by the Revision Steering Group (RSG); or to determine whether the two advisory groups and the RSG have reached consensus over the revision of the Somatoform disorders categories.

12. ICD-11 Beta is a work in progress, updated daily, and not finalized. Proposals for new categories are subject to ongoing revision and refinement, to field test evaluation, may not survive field testing, and are 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. Graphic comparing Fink et al’s BDS criteria with DSM-5’s SSD

5. 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.

 

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:

Click to access 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

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.”

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