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

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

Update on February 27, 2014:

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

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

Update on February 26, 2014:

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

WHOtwitter12_02_14

Update on February 25, 2014:

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

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

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

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

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

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

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

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

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

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

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

Answer to Oral Question

ME/CFS

11.

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

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

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

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

Annette Brooke:

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

Jane Ellison:

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

Update on February 25, 2014:

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

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

Update: 12 Point Skinny on ICD-11

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

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

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

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

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

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

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

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

WHO ‏@WHO 

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

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This 12 Point Skinny is also on TwitLonger:

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

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

http://wp.me/pKrrB-3Mk  

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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References for 12 Point Skinny on ICD-11:

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

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

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

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

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

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

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

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

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

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

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

BDD at 02.02.14

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

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

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

BDD 240214

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

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

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

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

Somatoform disorders is listed under Synonyms to Bodily distress disorder.

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

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

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

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

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

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

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

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

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

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

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

If you go to the Foundation Component view:

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

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

“show/hide availability in main linearizations”.

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

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

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

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Neurasthenia

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

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

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

Somatoform disorder, unspecified

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

It is currently listed thus:

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

Neurasthenia240214

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

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

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

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So what are the implications?

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

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

that the section parent category remains Bodily distress disorder;

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

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

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

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

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

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

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

References:

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

New paper by Wolfe et al on reliability and validity of SSD diagnosis in patients with Rheumatoid Arthritis and Fibromyalgia

Post #295 Shortlink: http://wp.me/pKrrB-3LP

This post is an update to Post #284, November 17, 2013, titled:

Correspondence In Press in response to Dimsdale et al paper: Somatic Symptom Disorder: An important change in DSM

In December 2013, Journal of Psychosomatic Research published four letters in response to the Dimsdale el al paper including concerns from Winfried Häuser and Frederick Wolfe for the reliability and validity of DSM-5’s new Somatic symptom disorder:  The somatic symptom disorder in DSM 5 risks mislabelling people with major medical diseases as mentally ill.

A new paper has been published by PLOS One on February 14, 2014:

Symptoms, the Nature of Fibromyalgia, and Diagnostic and Statistical Manual 5 (DSM-5) Defined Mental Illness in Patients with Rheumatoid Arthritis and Fibromyalgia Frederick Wolfe, Brian T. Walitt, Robert S. Katz, Winfried Häuser

The paper is published under Open Access and includes the full SSD criteria in Table S1

The paper’s references include the following commentaries and an article by science writer, Michael Gross:

Frances A, Chapman S (2013) DSM-5 somatic symptom disorder mislabels medical illness as mental disorder. Australian and New Zealand Journal of Psychiatry 47: 483–484. doi: 10.1177/0004867413484525 [PMID 23653063]

Frances A (2013) The new somatic symptom disorder in DSM-5 risks mislabeling many people as mentally ill. BMJ: British Medical Journal 346. doi: 10.1136/bmj.f1580 [PMID 23511949]

Gross M (2013) Has the manual gone mental? Current biology 23: R295–R298. doi: 10.1016/j.cub.2013.04.009 Full text

Full paper, Tables and Figures in text or PDF format:

Symptoms, the Nature of Fibromyalgia, and Diagnostic and Statistical Manual 5 (DSM-5) Defined Mental Illness in Patients with Rheumatoid Arthritis and Fibromyalgia Frederick Wolfe, Brian T. Walitt, Robert S. Katz, Winfried Häuser

Text version

PDF version

Abstract

Purpose

To describe and evaluate somatic symptoms in patients with rheumatoid arthritis (RA) and fibromyalgia, determine the relation between somatization syndromes and fibromyalgia, and evaluate symptom data in light of the Diagnostic and Statistical Manual-5 (DSM-5) criteria for somatic symptom disorder.

Methods

We administered the Patient Health Questionnaire-15 (PHQ-15), a measure of somatic symptom severity to 6,233 persons with fibromyalgia, RA, and osteoarthritis. PHQ-15 scores of 5, 10, and 15 represent low, medium, and high somatic symptom severity cut-points. A likely somatization syndrome was diagnosed when PHQ-15 score was ≥10. The intensity of fibromyalgia diagnostic symptoms was measured by the polysymptomatic distress (PSD) scale.

Results

26.4% of RA patients and 88.9% with fibromyalgia had PHQ-15 scores ≥10 compared with 9.3% in the general population. With each step-wise increase in PHQ-15 category, more abnormal mental and physical health status scores were observed. RA patients satisfying fibromyalgia criteria increased from 1.2% in the PHQ-15 low category to 88.9% in the high category. The sensitivity and specificity of PHQ-15≥10 for fibromyalgia diagnosis was 80.9% and 80.0% (correctly classified = 80.3%) compared with 84.3% and 93.7% (correctly classified = 91.7%) for the PSD scale. 51.4% of fibromyalgia patients and 14.8% with RA had fatigue, sleep or cognitive problems that were severe, continuous, and life-disturbing; and almost all fibromyalgia patients had severe impairments of function and quality of life.

Conclusions

All patients with fibromyalgia will satisfy the DSM-5 “A” criterion for distressing somatic symptoms, and most would seem to satisfy DSM-5 “B” criterion because symptom impact is life-disturbing or associated with substantial impairment of function and quality of life. But the “B” designation requires special knowledge that symptoms are “disproportionate” or “excessive,” something that is uncertain and controversial. The reliability and validity of DSM-5 criteria in this population is likely to be low.

 

Final post on Dx Revision Watch

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

This will be the final post on Dx Revision Watch.

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

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

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

Suzy Chapman
Dx Revision Watch

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

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

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

Update on February 25, 2014:

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

Update on February 12, 2014:

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

WHO ‏@WHO 

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

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

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

Black Hole Milkyway

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

PVFS, BME, CFS

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

The term Postviral fatigue syndrome remains unaccounted for.

May 2012: Beta drafting platform launches

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

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

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

as here, in this July 25, 2012 screenshot.

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

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

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

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

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

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

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

Spring 2013: Beta draft:

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

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

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

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A Beta draft black hole?

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

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

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

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

I have asked for clarification for the following:

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

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

Chronic Fatigue Syndrome;
Benign Myalgic encephalomyelitis;
Postviral fatigue syndrome

currently proposed to be classified within ICD-11?

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

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

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

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

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

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

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

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

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

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

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

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

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

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

TAG Neurology may have removed these terms from the public version of the Beta draft in order to avoid controversies surrounding the development of CFS and ME case definitions, for example, the issue of the HHS contract with U.S. Institute of Medicine (IOM) to develop “evidence-based clinical diagnostic criteria for ME/CFS” and to “recommend whether new terminology for ME/CFS should be adopted.”

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

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

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