Updates on status of ICD-11 and changes to other classification and terminology systems

PVFS, ME and CFS in classification and terminology systems: notes for the future

June 30, 2019

https://dxrevisionwatch.com/2019/06...and-terminology-systems-notes-for-the-future/

In 2002, I set up FreeMEuk — a Yahoo Group support and information exchange for patients with ME, CFS, and for carers, like myself. In 2007, I launched ME agenda to provide patients, carers and advocates with information, resources and commentary on the political issues affecting the lives of myalgic encephalomyelitis (ME) patients in the UK.

In January 2010, I created Dx Revision Watch specifically to monitor and report on the development of the American Psychiatric Association’s DSM-5, the development of the World Health Organization’s ICD-11 and on other classification and terminology systems. Where appropriate, I have galvanized stakeholders to participate in review and comment exercises or co-ordinated other forms of response.

Down the years, I’ve undertaken numerous short and long-term ad hoc projects, advised others on technical matters relating to classification and terminology systems, submitted and collaborated in the submission of proposals, briefed politicians and patient organizations and kept patient forums up to date with key developments.

Today I am retiring after 17 years of advocacy work.

My sites will remain online for the foreseeable future. Over the coming months I shall be carrying out some housekeeping on Dx Revision Watch to remove or archive older, less relevant content.

Classification and terminology systems are going to need continued monitoring; where required, input from stakeholder groups — clinicians, researchers, health practitioners and professional body allies, social workers, disability lawyers and advocacy organizations will need to be co-ordinated.

Where no process for public stakeholder input currently exists, channels of direct communication will need to be opened with the agencies responsible for the development and management of these systems and collaborative dialogues established.

WHO, for example, ostensibly gives more consideration to evidence based submissions supported by rationales, international consensus and input from clinical and professional bodies — has scant regard for patient opinion and none whatsoever for petitions or mass mailings — the latter and similar types of “action” will only undermine the careful work and discourse that I and others have fostered.

All these systems will require regular monitoring:



DSM-5:
DSM-5 published in May 2013; it has an update process which reviews formal submissions for changes to criteria, related texts, assessment measures or corrections. DSM-5 also absorbs relevant coding changes in the annual FY releases of the U.S. specific ICD-10-CM. Approved proposals are posted for a 45 day stakeholder comment period. For example, in 2015, an edit in the text for Somatic symptom disorder¹ was approved for implementation and the revised text published in the DSM-5 Update Supplement.

1 DSM-5 Update: Supplement to DIAGNOSTC AND STATISTICAL MANUAL OF MENTAL DISORDERS, FIFTH EDITION October 2018



ICD-10:
Member states using the WHO’s ICD-10 don’t all use the same version (or the most recent version), for example, NHS England currently mandates the use of ICD-10 Version: 2015, not Version: 2016. WHO has said that the final update to ICD-10 will be Version: 2019. This final release is understood to have been prepared but is not currently available on the ICD-10 Browser platform.

Continued in next post

 

Continued from previous post

ICD-10-CM:
The U.S. uses ICD-10 for reporting mortality and developed a “clinical modification” of ICD-10 (called ICD-10-CM) for morbidity. A new release of ICD-10-CM is posted on the CDC website annually, in June.

There are two public NCHS/CDC Coordination and Maintenance Committee meetings a year through which proposals for changes to the ICD-10-CM can be submitted for discussion (in March and September) followed by a stakeholder comment period.

At the September 12, 2018 C & M Committee meeting, proposals for changes to the existing coding of R53.82 Chronic fatigue syndrome NOS; G93.3 Postviral fatigue syndrome, Benign myalgic encephalomyelitis; and a second option for addition of the SEID term were presented for consideration and public comment¹. Whilst no changes for these codes were approved for implementation in the FY 2020 ICD-10-CM release, this topic will need continued monitoring as it may be revisited at a future C & M Committee meeting for presentation of revised proposals.

1 ICD-10-CM Coordination and Maintenance Committee Meeting, September 11-12, 2018, Diagnosis Agenda Part 2


Other country specific clinical modifications of ICD-10:
Around 25 member states are also using a modification of the WHO’s ICD-10. For example: Canada (ICD-10-CA); Germany (ICD-10-GM); Australia (ICD-10-AM). Belgium, Luxembourg and Spain use ICD-10-CM; Ireland and Slovenia use ICD-10-AM.

Countries using modifications of ICD-10 have individual update cycles and varying policies around public stakeholder input and review. Some countries post their Tabular List and Index modifications in the public domain; others are available only under licence, for example, Australia’s ICD-10-AM isn’t publicly available. The coding, hierarchy and chapter location of the PVFS, BME and CFS terms differs between some of the clinical modifications, while others remain consistent with the structure of the WHO’s ICD-10.

This table from the eHealth DSI Semantic Knowledge Base project compiles information provided from a number of member states on their use of ICD (or a modification of ICD) and their plans regarding potential future implementation of ICD-11. Information has been provided by: Austria, Belgium, Croatia, Cyprus, Czech Republic, Estonia, France, Germany, Greece, Hungary, Ireland, Italy, Luxenbourg, Malta, Netherlands, Portugal, Slovenia and Spain: Current status of the use of ICD by eHDSI deploying countries (2018)



SNOMED CT:
SNOMED CT is a comprehensive clinical terminology system used in electronic patient health records. SNOMED CT maps to ICD-10 and there is a SNOMED CT to ICD-11 Mapping Project in progress.

SNOMED International has thirty-nine member countries. There is a SNOMED CT International Edition, for which two releases are issued per year (in January and July). There are a number of country specific national editions which release twice yearly updates on a staggered schedule. 12 of these national editions can be viewed on the SNOMED CT Browser platform.

SNOMED CT national editions absorb the changes in the most recent release of the International Edition but they can also include additional country specific terms. For example, the UK Edition has a unique Concept term: Medically unexplained symptoms (SCTID: 887761000000101). Prior to March 2019, the SNOMED CT Netherlands Edition had retained the term “neurasthenie” under Synonyms to Chronic fatigue syndrome, although the Concept term: Neurasthenia (SCTID: 268631001) and some associated codes had been retired from the International Edition and from all other national editions, some years ago. Following a request supported by a rationale, the term “neurasthenie” has now been removed from the Netherlands Edition.

The SNOMED CT Concept term for Chronic fatigue syndrome is SCTID 52702003 Chronic fatigue syndrome (disorder). Benign myalgic encephalomyelitis; and Myalgic encephalomyelitis are included as Synonym terms.

Following a successful submission in February 2018 for the addition of a new parent, SCTID: 52702003 Chronic fatigue syndrome (disorder) has been assigned under parent: SCTID: 118940003 Disorder of nervous system (disorder) since the July 2018 release of the SNOMED CT International Edition. This change of parent has been incorporated into the national editions.

The International Edition and the national editions of SNOMED CT will need monitoring twice yearly for changes and additions to their content.

Continued in next post

 

Continued from previous post

ICD-11:
On May 25, 2019, the 72nd World Health Assembly voted unanimously to adopt the ICD-11. The earliest date from which member states can start using the ICD-11 code sets for reporting data is January 1, 2022. Countries are beginning to evaluate the new edition and develop road maps but even early implementers are anticipated to take several years to prepare their health systems for migration. There is no mandatory implementation date and countries will transition to ICD-11 at their own pace and according to their resources and requirements. For some years to come, WHO will be accepting data reported using both ICD-10 and ICD-11 code sets.

ICD-11 update and maintenance: The current release of ICD-11 (Version 04/2019) on the Blue ICD-11 MMS platform is a stable release but an update and maintenance cycle is already in place.

The various ICD-11 Topic Advisory Groups and sub working groups, the Revision Steering Group and the Joint Task Force have all been sunsetted. WHO is now advised on how to process proposals for changes to ICD-11 by the Family of International Classifications Network (WHO-FIC); the Classifications and Statistics Advisory Committee (CSAC); the Medical and Scientific Advisory Committee (MSAC); the Mortality and Morbidity Reference Groups; and the Functioning and Disability Reference Group.

Updates that impact on international reporting (the 4 and 5-digit structure of the stem codes) will be published every five years. Updates at a more detailed level can be published at annual rates. Additions to the ICD-11 index can be done on an ongoing basis. (There are currently in the region of 1200 unprocessed proposals waiting to be processed, with new proposals being submitted daily by WHO, professional bodies and other stakeholders.)

PVFS, BME, CFS: In a decision supported by the MSAC and CSAC committees, WHO rightly rejected the proposal of Dr Tarun Dua/Topic Advisory Group Neurology to delete the G93.3 legacy terms from the Diseases of the nervous system chapter and reclassify these terms in the Symptoms, signs chapter, under Symptoms, signs or clinical findings of the musculoskeletal system.

All three terms have been retained under their legacy chapter, under parent class: Other disorders of the nervous system, with 8E49 Postviral fatigue syndrome retained as the Concept Title. Benign myalgic encephalomyelitis; and chronic fatigue syndrome are both specified as Inclusion terms. Reciprocal exclusions for MG22 Fatigue were submitted for and approved.

The Proposal Mechanism platform for ICD-11 will need constant surveillance: there are currently no unprocessed proposals pending review for PVFS, BME and CFS. To date, WHO has rejected proposals for deprecation of the word “Benign” from Benign myalgic encephalomyelitis. This will need pursuing.





BDD: A proposal submitted by a third party in April 2017 for Deletion of 6C20 Bodily distress disorder has remained under review with the CSAC committee. According to WHO admins, in June 2019: “This proposal is being sent to MSAC to ensure the precedent decision on this issue still stands. Team3 WHO 2019-Jun-12 – 16:40 UTC”

(In February 2019, my own recommendations for 6C20 Bodily distress disorder had been marked as rejected by a different WHO admin team, with the comment: “This proposal has been extensively discussed by WHO and its advisory committees. There is no new scientific evidence to support this proposal and it will not be further processed. Team 2 WHO 2019-Feb-26 – 23:04 UTC“)

I have requested that in any ongoing CSAC/MSAC deliberations in relation to the Bodily distress disorder category that these previously rejected recommendations are reviewed and reconsidered, including submissions for exclusions for PVFS, BME and CFS under 6C20 Bodily distress disorder.

See: Table: Status of ICD-11 processed proposals, Suzy Chapman, April 2019, for more information on approved and rejected proposals.



Clinical modifications of ICD-11:
It is understood that WHO's intention is to limit development of national modifications and that policies around the licensing of ICD-11 are still being formulated. Countries developing modifications of ICD-11 will need surveillance.

See post World Health Assembly adopts ICD-11: When will member states start using the new edition? for more information on country plans.

See Presentation slides #36-38 for more information on licensing and the development of country modifications: Insights into the Next Revision: Like Texas, Everything is Bigger in ICD-11, Kathy Giannangelo, RHIA, CCS, CPHIMS, FHIMA, Texas Health Information Management Association.

Continued in next post

[Edited for clarity and to insert link for Giannangelo presentation.]

 

Continued from previous post

ICD-11 and the CDDG guideline for mental disorders:
For ICD-11, the WHO Department of Mental Health and Substance Abuse has developed the “Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders” (an equivalent publication to ICD-10’s “Blue Book”).

The CDDG provides expanded clinical descriptions, essential (required) features, boundaries with other disorders and normality, differential diagnoses, additional features, culture-related features and codes for all mental and behavioural disorders commonly encountered in clinical psychiatry; it is intended for mental health professionals and for general clinical, educational and service use.

WHO has said it plans to release the CDDG “as soon as possible” after WHA’s adoption of ICD-11. But it remains unclear whether the CDDG has been finalized or if it will be released this month, later this year or next year. See this post Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders for more information.

Whilst clinicians have been able to register to review and provide feedback, no draft texts for the CDDG have been made available for public stakeholder scrutiny and comment and I have not had access, for example, to the most recent draft for the clinical descriptions and diagnostic guidelines for ICD-11’s Bodily distress disorder.



ICD-11 and the ICD-11 PHC:
Also under development is the WHO’s ICD-11 PHC — a clinical guideline written in simpler language to assist non-mental health specialists, especially primary care practitioners and non medically trained health workers, and also intended for use in low resource settings and low- to middle-income countries, with the diagnosis and management of common mental disorders. It comprises 27 mental disorders and contains no other disorders or diseases. Like the ICD-10 PHC (1996), this revised diagnostic and management guideline will not be a mandatory classification for member states.

For the mandatory core ICD-11 classification, WHO is going forward with the SSD-like Bodily distress disorder (BDD).

But the ICD-11 PHC is proposed to include a disorder category called “Bodily Stress Syndrome (BSS)” that has been adapted from the Fink et al (2010) Bodily distress syndrome (BDS). See Comparison of SSD, BDD, BDS, BSS in classification systems, July 2018.

Under exclusions and differential diagnoses for BSS, certain psychiatric and general medical diagnoses have to be excluded but CFS, ME; IBS; and FM appear not to be specified as exclusions. See this post Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders for more information.

It’s not known when this guideline is expected to be finalized and made available for download. The ICD-11 PHC has not been developed on a publicly accessible platform and draft texts are not available for public stakeholder review and comment. This non mandatory 27 mental disorder guideline needs close scrutiny.



ICPC-3:
The WONCA developed and WHO endorsed, International Classification of Primary Care (ICPC-2) is under revision for ICPC-3.

ICPC-2 is available in 34 countries; used in primary care in 27 countries and is mandatory in 6 EU countries, eg the Netherlands. The content of ICPC-3 will be linked to relevant classifications, such as ICD-10, ICD-11, ICF, ICHI, DSM-5, clinical terminologies such as SNOMED-CT, but also to previous versions of ICPC.

The draft content for ICPC-3 is not being developed on a publicly accessible platform and it’s unclear whether any form of stakeholder review will be undertaken or at what point.

Caveat: This ICPC-3 roadmap on an ICPC-3 Working Group platform may have been revised since it was posted: ICPC-3 Roadmap Milestones August 28, 2018.

Dr Marianne Rosendal (Aarhus University), who has published with Prof Per Fink, is the European representative on WONCA’s International Classification Committee and a member of the revision committee for ICPC-2, as is the U.S.’s, Dr Michael Klinkman. ICPC-2 meeting summary documents dating from 2010/2011 indicate that Dr Rosendal has discussed the potential for inclusion of a Bodily distress syndrome or similar disorder concept in the ICPC-3. Prof Per Fink is likely to be lobbying hard for its inclusion. The development of ICPC-3 will need very close monitoring.



Resources:

Status of ICD-11 processed proposals v3, Suzy Chapman, April 2019

Comparison of Classification and Terminology Systems, Chapman & Dimmock, July 2018

Comparison of SSD, BDD, BDS, BSS in classification systems, Chapman & Dimmock, July 2018

Post: ICD-11 implementation package, June 06, 2019

Post: World Health Assembly adopts ICD-11: When will member states start using the new edition? June 17, 2019

Post: Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders, June 28, 2019

Presentation: Insights into the Next Revision: Like Texas, Everything is Bigger in ICD-11, Kathy Giannangelo, RHIA, CCS, CPHIMS, FHIMA, Texas Health Information Management Association.

[Ends]

[Edited to insert Giannangelo presentation.]

 

https://www.youtube.com/watch?v=eVWMZwALKyA

 

@Dx Revision Watch I add my well wishes to those of Trish. Thank you for your years of undertaking this work. Happy retirement! I have no doubt you’ve earned it!

 

As no-one else has posted this, this meeting has now taken place:

The U.S. National Committee on Vital and Health Statistics (NCVHS) serves as the statutory public advisory body to the Secretary of Health and Human Services for health data, statistics, privacy, and national health information policy and the Health Insurance Portability and Accountability Act (HIPAA).

https://ncvhs.hhs.gov/meetings/subc...-icd-11-evaluation-expert-roundtable-meeting/

National Committee on Vital and Health Statistics Subcommittee on Standards

ICD-11 Expert Roundtable Meeting

August 6-7, 2019

HHS Headquarters, Hubert Humphrey Building
200 Independence Avenue, SW, Room 705-A
Washington, DC 20201

Agenda

https://ncvhs.hhs.gov/wp-content/up...pert-Roundtable-Meeting-August-6-7-2019-1.pdf

----------------

An audio, summary or transcript of this meeting is not yet available but there is a brief report, here, from an industry stakeholder:


https://www.aapc.com/blog/48275-us-gets-the-ball-rolling-on-icd-11/

AACC Advancing the Business of Health Care

US gets the ball rolling on ICD-11

• By admin aapc
• In AAPC News
• August 16, 2019

-------------

I will be posting links for the summary, transcript etc when these are available.

But I would hope that one or two others will be monitoring the NCVHS meetings site for future discussion of progress towards U.S. implementation of ICD-11 and will update this thread, as I am retired now.

Edited to add: Mp3 recordings now available (in next post); transcripts and presentations to follow.

 

Mp3 recordings of this two day NCVHS ICD-11 Expert Roundtable meeting are now available:

National Committee on Vital and Health Statistics
Subcommittee on Standards

ICD-11 Expert Roundtable Meeting August 6-7, 2019

HHS Headquarters, Hubert Humphrey Building
200 Independence Avenue, SW, Room 705-A
Washington, DC 2020

https://ncvhs.hhs.gov/meetings/standards-subcommittee-health-terminologies-vocabularies-roundtable/


Agenda: https://ncvhs.hhs.gov/wp-content/up...pert-Roundtable-Meeting-August-6-7-2019-1.pdf

Day 1: Mp3 Recording - Subcommittee on Standards – ICD-11 Expert Roundtable Meeting August 6, 2019
https://ncvhs.hhs.gov/wp-content/uploads/2019/08/2019 August 6-7 NCVHS SC Meeting Audio - Day 1.mp3

Day 2: Mp3 Recording - Subcommittee on Standards – ICD-11 Expert Roundtable Meeting August 7, 2019
https://ncvhs.hhs.gov/wp-content/uploads/2019/08/2019 August 6-7 NCVHS SC Meeting Audio - Day 2.mp3

Files for presentations and transcripts may be available later.

 

This post and the following ones have been moved from this thread.

As some of you will be aware, the ICD-10 code F48.0 Neurasthenia and its inclusion, Fatigue syndrome has been retired for ICD-11 (along with most of the ICD-10 F45.x Somatoform disorders codes) and replaced with the single new category: C620 Bodily distress disorder and three coded for severity specifiers.

Although under ICD-10, there is an Exclusion under F48.0 for the G93.3 entities, for ICD-11, there are currently no Exclusions under BDD for the 8E49 terms and BDD can be applied in the presence of general medical conditions and diseases* (as is the case with some of existing ICD-10's Somatoform disorder categories):

*"If another health condition is causing or contributing to the symptoms, the degree of attention is clearly excessive in relation to its nature and progression." https://icd.who.int/dev11/l-m/en#/http://id.who.int/icd/entity/767044268​

For ICD-11, ICD-10's R53 Malaise and fatigue is replaced with MG22 Fatigue. Under MG22 Fatigue, I did obtain the addition of Exclusions for all three 8E49 terms.


Contrary to Dr Diane O'Leary's contention that:

"Criteria* for BDD are not particularly problematic for ME patients. They are compatible with construing ME as a biological disease" [1]​

BDD remains very problematic and I have continued to push for Exclusions for the ICD-11 8E49 terms.

*NB: There are no "criteria" as such for ICD-11's BDD but a disorder description and characterization text. This allows clinicians more flexibility to use clinical judgement when assessing whether a patient meets the required features and disorder description than the more rigid DSM-5 Somatic symptom disorder (SSD) criteria set. BDD thus poses an even greater threat to patients with chronic, multiple bodily symptoms or a single chronic symptom than SSD already does for potential misdiagnosis, missed diagnoses and misapplication of an additional BDD diagnosis.

1 “BODILY STRESS SYNDROME” INFO SHEET, March 2018, Dr Diane O'Leary for Forward-ME:
http://www.forward-me.org.uk/Reports/BODILY STRESS SYNDROME INFO SHEET CORRECTED.pdf

 

What I’m saying is that while BDS criteria specifically target ME, BDD criteria do not. So if the UK recognizes ME as a biological disease - and I have hopes that this change is underway - that new approach will not conflict with BDD.

The BDD construct does not force any doctor to include ME. They can choose to, and many certainly will, so it would be best to have an exclusion for ME. But the construct does not specifically target ME. BDS criteria were designed to ensure that ME patients would be “captured” - and they are very successful at that goal. As a result, if the U.K. decided that ME is a biological disease and BDS criteria had been recommended, those would need to be changed or removed or disclaimed.

 

Yes, I completely agree that BDD is a terrible construct. I’ve written a proposal to reject it that has now been escalated to the medical sciences committee. BDD is as reckless and unscientific as “MUS”. All of those BPS constructs are awful full stop.

I’m just clarifying the passage that keeps getting quoted out of context. I am not saying BDD is good. (You can read my rejection proposal at the site.) I’m just saying that it does not specifically target ME, so it’s not a direct and explicit threat for ME patients. BDS is a direct and explicit threat that’s incompatible with a biological disease approach to ME.

 

Here’s a link to my proposal to reject BDD. https://docs.wixstatic.com/ugd/23f4ba_9301dfea693f4df190b656a48886cbcd.pdf

 

Dr O'Leary has also stated:

"What Can We Do About It?

"It is very important to be clear and focused about the nature of the objection. ME advocates have no reason to object to the basic criteria for BSS in the ICD for primary care, ICD-11-PHC. In fact, it is in the interests of ME patients to encourage the WHO to adopt just the basic criteria for BSS as they are currently in place. Both studies by the WHO support doing so, and an additional, independent study in Austria also supports doing so xvi. This is the goal. The ME community has very strong reasons to object to the additional recommendation of symptom cluster criteria for BSS in ICD-11-PHC. This is where attention needs to be focused." [1]

1 “BODILY STRESS SYNDROME” INFO SHEET, March 2018, Dr Diane O'Leary for Forward-ME:
http://www.forward-me.org.uk/Reports/BODILY STRESS SYNDROME INFO SHEET CORRECTED.pdf


--------------------

Proposal for the Deletion of BDD, Suzy Chapman, submitted March 02, 2017:

https://icd.who.int/dev11/proposals...lGroupId=c321880e-aa46-4328-ac19-7153c5e7a364

or

https://dxrevisionwatch.files.wordpress.com/2017/03/bdd-submissionv3.pdf

This proposal of March 02, 2017 was marked as Rejected by WHO in February 2019 with the following comment from Team 2 WHO:

This proposal has been extensively discussed by WHO and its advisory committees. There is no new scientific evidence to support this proposal and it will not be further processed.

Team 2 WHO 2019-Feb-26 - 23:04 UTC​

-----------------

With reference to Dr O'Leary's submission of April 08, 2017:

Team3 WHO commented in June 2019:

This proposal is being sent to MSAC to ensure the precedent decision on this issue still stands.

Team3 WHO 2019-Jun-12 - 16:40 UTC
​

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This Letter to the Editor published in the June 2019 edition of World Psychiatry (Public stakeholders’ comments on ICD-11 chapters related to mental and sexual health) summarizes common themes of the submissions for the ICD-11 mental disorder categories that generated the greatest response [3].


https://onlinelibrary.wiley.com/doi/pdf/10.1002/wps.20635

Public stakeholders’ comments on ICD-11 chapters related to mental and sexual health

Extract:

A majority of submissions regarding bodily distress disorder were critical, but were often made by the same individuals (N=8). Criticism mainly focused on conceptualization (48%; κ=0.64) and the disorder name (43%; κ=0.91). Use of a diagnostic term that is closely associated with the differently conceptualized bodily distress syndrome5 was seen as problematic. One criticism was that the definition relies too heavily on the subjective clinical decision that patients’ attention directed towards bodily symptoms is “excessive”. A number of comments (17%; κ=0.62) expressed concern that this would lead to patients being classified as mentally disordered and preclude them from receiving appropriate biologically-oriented care. Some contributors submitted proposals for changes to the definition (30%; κ=0.89). Others opposed inclusion of the disorder altogether (26%; κ=0.88), while no submission (κ=1) expressed support for inclusion.

The WHO decided to retain bodily distress disorder as a diagnostic category6 and addressed concerns by requiring in the CDDG the presence of additional features, such as significant functional impairment.​

 

August 04, 2019 by email:

To: Lia Curtin, Editorial Assistant; Professor Andrew Miles, Regional Editor, UK & Europe

CC: Peter Denton White, Emeritus Professor of Psychological Medicine, Wolfson Institute of Preventive Medicine, Queen Mary University of London

Dr Christopher Chute, John Hopkins, Chair, ICD-11 Medical Scientific Advisory Committee (MSAC);
Dr Robert Jakob, World Health Organization, Team Leader Classifications and Terminologies (ICD, ICF, ICHI);
Dr Geoffrey Reed, Columbia University, Senior Project Officer for development of ICD-11 Mental and Behavioural Disorders, Dept of Mental Health and Substance Abuse, World Health Organization



Dear Ms Curtin and Professor Miles,

Re: Journal of Evaluation in Clinical Practice, Version of Record online: 01 August 2019: Original Paper: White PD. A perspective on causation of the chronic fatigue syndrome by considering its nosology [1].

I write to bring to your attention errors within Professor White's paper, specifically in relation to classification and coding in ICD-10 and ICD-11.

I am taking the liberty of copying in three key members of the World Health Organization's ICD-11 development team, Drs Jakob, Reed and Chute, whom you may wish to consult.


1: The author states:

'Turning to established diagnostic classification systems, how are CFS and ME considered? There are arguably seven different ways to classify the illness within the International Classification of Diseases, 10th edition (ICD‐10).24 . . . Finally, the miscellaneous chapter includes “R53.82 Chronic fatigue, unspecified,” which includes “chronic fatigue syndrome NOS,” and if a patient is of a certain age, one might even consider “R54 Senile asthenia”!'

24. World Health Organisation. International Classification of Diseases, 10th edition. 2016. Retrieved from: https://www.who.int/classifications/icd/icdonlineversions/en/


This statement is incorrect.

There is no code "R53.82 Chronic fatigue, unspecified" or inclusion, "chronic fatigue syndrome NOS" within the International Classification of Diseases, 10th edition. 2016.

"R53.82 Chronic fatigue, unspecified" and its inclusion, "chronic fatigue syndrome NOS" are specific to the U.S.'s clinical modification, ICD-10-CM, which is developed and maintained by NCHS/CDC [2].

These two terms were added by NCHS to ICD-10-CM's Chapter 18: Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99) during the ICD-10-CM development and adaptation process. Neither term is coded for or indexed within the WHO's ICD-10 (which has no Tabular List four or five character codes between R53 and R54), or within ICD-11.


2: The author states:

'The 11th edition of the ICD still holds ME in the neurology chapter, classified under post‐viral fatigue syndrome, whereas there has been a radical change to somatoform disorders within the mental and behavioural disorders chapter, which now considers these as examples of “body [sic] distress disorder.” Neurasthenia has been omitted.2'

which is correct, but the author goes on to state:

'This clustering of functional somatic syndromes has been reported many times and needs to be considered in any study of the aetiology of CFS. Fink's concept of body [sic] distress syndrome recently incorporated into ICD‐11 is an alternative way of considering this finding.29'

29. Fink P, Schröder A. One single diagnosis, bodily distress syndrome, succeeded to capture 10 diagnostic categories of functional somatic syndromes and somatoform disorders. J Psychosom Res. 2010;68(5): 415‐426.


This statement is incorrect.

The Fink P, Schröder A. (2010) diagnostic construct, "Bodily distress syndrome (BDS)" has not been incorporated into ICD-11 MMS (Mortality and Morbidity Statistics).

For the core ICD-11, WHO has approved the differently conceptualized, "Bodily distress disorder (BDD)" with three coded for severity specifiers [3][4].

Creed & Gurege [5], Gurege & Reed [6] and Per Fink [7] clarify that as defined for ICD-11, BDD is a conceptually different diagnosis: ICD-11's BDD and the Fink P, Schröder A. (2010) BDS are differently characterized, have very different disorder descriptions/criteria, and are inclusive of different patient sets.

Rather than provide clarity around ICD classification, misconceptions within this paper will add further confusion between these divergent diagnostic constructs.

I should be pleased if these errors can be discussed with the paper's author and with the WHO and addressed either in the version of the paper currently online or via corrigenda.

Sincerely,

Susan E Chapman

References:

1 White PD. A perspective on causation of the chronic fatigue syndrome by considering its nosology.
J Eval Clin Pract. 2019;1–6. https://doi.org/10.1111/jep.13240

2 Centers for Disease Control, Clinical Modification (ICD-10-CM) 2020 release:
https://www.cdc.gov/nchs/icd/icd10cm.htm#FY 2020 release of ICD-10-CM

3 ICD-11 for Mortality and Morbidity Statistics (Version: 04/2019), 6C20 Bodily distress disorder:
https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/767044268

4 Fuss J, Lemay K, Stein DJ, Briken P, Jakob R, Reed GM and Kogan CS. (2019). Public stakeholders’ comments on ICD‐11 chapters related to mental and sexual health. World Psychiatry, 18: 233-235. https://onlinelibrary.wiley.com/doi/full/10.1002/wps.20635

5 Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. doi: 10.3109/09540261.2012.741063

6 Gureje O, Reed GM. Bodily distress disorder in ICD-11: problems and prospects. World Psychiatry. 2016 Oct;15(3):291-292. doi: 10.1002/wps.20353

7 Syndromes of bodily distress or functional somatic syndromes - Where are we heading. Lecture on the occasion of receiving the Alison Creed award 2017, Fink, Per. Journal of Psychosomatic Research, Volume 97, 127 - 130 https://www.jpsychores.com/article/S0022-3999(17)30445-2/fulltext

Lecture slides: Lecture slides: https://dxrevisionwatch.files.wordpress.com/2019/09/plenary_prof_fink.pdf

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Negotiations with the editors of Journal of Evaluation in Clinical Practice and the author for corrigenda are ongoing.

 

I’m not sure I’m understanding your point Suzy. At the time that info sheet was written, BDD was going to be implemented, so there was little point in campaigning against it. I see BDD as a general threat to all those who suffer from undiagnosed disease. It is not a specific threat for ME patients.

It’s definitely been worth the effort to try to get an exclusion. That’s been important. Still I’m relieved to know that if the U.K. goes for the bio disease approach to ME we won’t need an exclusion for BDD. NICE doesn’t have to worry about a potential conflict with BDD, in other words.

BDS criteria had not been implemented at the time of that info sheet. (I don’t actually know if there’s ever been a public decision on that.) Those criteria are specifically designed to ensure that ME patients go down the mental health track. That means BDS would directly conflict with a bio based disease approach for NICE. So yeah, if there was ever going to be a campaign against a construct, BDS would definitely be the one for ME patients to reject with a clear unified voice.

 

Oh I do want to say that your work pointing out White’s errors is just marvelous, Suzy. Thanks for exposing those confusions!

 

Given the actions taken against me by the Countess of Mar, in April 2018, following public and private criticism of a number of statements made by Dr O'Leary in briefing documents for Forward-ME and in various published papers, I am not prepared to engage directly with Dr O'Leary.

 

Journal of Evaluation in Clinical Practice, Version of Record online: 01 August 2019: Original Paper:

White PD. A perspective on causation of the chronic fatigue syndrome by considering its nosology.

QED.