Post #360 Shortlink: https://wp.me/pKrrB-59G
1. Next release of the ICD-11 MMS (the blue "Version for preparing implementation" platform)
It was anticipated that the ICD-11 Blue platform would continue to be updated annually to incorporate all the changes approved and implemented in the Orange Maintenance platform since the last update was released.
There has been no new release of the Blue platform since April 2019.
So, for example, the exclusions for 8E49 PVFS; BME; and CFS under 6C20 Bodily distress disorder, which were approved and implemented in the Orange Maintenance platform in January, this year, don't yet display under the exclusions list for 6C20 Bodily distress disorder in the Blue platform.
A couple of weeks ago, I contacted the WHO's Dr John Grove to enquire when the next update of the Blue platform was anticipated to be published.
I also asked when the Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD-11 Mental, Behavioural and Neurodevelopmental Disorders is expected to be finalised and released.
Yesterday, I received a response from the WHO's Dr Robert Jakob who advised that the 2020 release of the ICD-11 Blue platform will be posted in a few weeks.
2. Proposal for deprecation of the prefix "Benign" from "Benign myalgic encephalomyelitis"
In February, I submitted a new proposal for removal of the prefix "Benign" from "Benign myalgic encephalomyelitis" citing, inter alia, the precedent of the removal of the "Benign" prefix for the final update of ICD-10 (Version: 2019).
My proposal and rationale can be read here in PDF format.
There remain hundreds of proposals waiting to be reviewed in the ICD-11 Proposal Mechanism and my proposal has not yet been processed. I am hoping it will be reviewed and accepted in time for inclusion in the ICD-11 MMS 2020 release.
3. Finalisation and publication of the CDDG
The Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD-11 Mental, Behavioural and Neurodevelopmental Disorders has been developed by the WHO Department of Mental Health and Substance Abuse. It is the equivalent of the ICD-10 "Blue Book".
The descriptive texts in Chapter 06: Mental, behavioural or neurodevelopmental disorders in the core version of ICD-11 are intended for use by coders and clerical workers as a basis for statistical reporting.
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 and is intended for use by mental health professionals and for general clinical, educational and service use.
The draft texts for the CDDG have not been accessible to public stakeholders for review and comment, though clinicians have been able to register to review the draft and provide feedback throughout its development, via the Global Clinical Practice Network platform.
Last year, the WHO stated that the CDDG would be published "as soon as possible" after the May 2019 adoption of ICD-11 at the 72nd World Health Assembly.
I was advised, yesterday, by Dr Jakob, that the CDDG is still being amended based on feedback from the field and that the mental health team hasn't provided a clear deadline [for its finalisation and release].
4. Publication of the ICD-11 PHC
There is no indication when the WHO expects to finalise and release the 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.
The ICD-11 PHC is proposed to comprise 27 mental disorders and contains no general medical diseases. Like the ICD-10 PHC (1996), this revised diagnostic and management guideline will not be mandatory for use by member states.
For the mandatory core ICD-11 classification, the WHO has gone forward with Bodily distress disorder (BDD), which is conceptually similar to DSM-5's Somatic symptom disorder (SSD).
But for the ICD-11 PHC, a disorder category called "Bodily Stress Syndrome (BSS)" that has been adapted from the Fink et al (2010) Bodily distress syndrome (BDS) is proposed to be included to replace ICD-10 PHC's F45 Unexplained somatic complaints and F48 Neurasthenia categories.
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.
For more information on the ICD-11 PHC see this post: Clinical Descriptions and Diagnostic Guidelines (CDDG) for ICD‐11 Mental, Behavioural and Neurodevelopmental Disorders
Slide presentation: MUS becomes Bodily Stress Syndrome in the ICD-11 for primary care, Marianne Rosendal
The ICD-11 PHC has not been developed on a publicly accessible platform and the draft texts for the 27 mental disorders proposed to be included are not available for public stakeholder review and comment.
The "Bodily Stress Syndrome (BSS)" category, its proposed text and proposed criteria need stakeholder scrutiny.
If ICD-11 PHC goes forward with its proposed BSS category, there will be all these diagnostic constructs and criteria sets in play:
Somatic symptom disorder (DSM-5; under BDD Synonyms list in the core ICD-11)
Bodily distress disorder (core ICD-11; SNOMED CT)
Bodily Stress Syndrome (ICD-11 PHC guideline for 27 mental disorders)
Bodily distress syndrome (Fink et al 2010, operationalized in Denmark and beyond)
plus the existing ICD-10 and SNOMED CT Somatoform disorders categories and their equivalents in ICPC-2.
5. A revised version of my report "Update on classification and coding of PVFS, ME and CFS for ICD-11" (v4 August 2020) is available to download
The PDF can be downloaded here.
Thumbnail pages 1 and 4:
6. The ICD-11 codes are now frozen
On February 10, 2020, the WHO stated on the Proposals platform: "The ICD-11 codes are now frozen. Proposed changes to the classification that would result in a code change are not permitted."
Changes that would not disrupt the structure of the code hierarchies, for example, additions to the Index, addition or deletion of Synonym terms or Exclusion terms, edits to category Description texts or correction of typos are permissible.
But proposals for major changes such as relocating an existing Concept Title to a different chapter (which would necessitate a code change) or moving a term under a different "primary parent" code within its current chapter could not be considered.
For further information on ICD-11 update schedules and what classes of changes are permitted see:
ICD-11 Reference Guide sections 3.8.1 to 2.8.7: 3.8 Annex: ICD-11 Updating and Maintenance
Filed under Bodily distress disorder, Bodily stress syndrome, CDDG, CFS ME, Diagnostic classification, Dr Robert Jakob, ICD-11, ICD-11 implementation, ICD-11 MMS, Myalgic encephalomyelitis Tagged with bodily distress disorder, bodily stress syndrome, CDDG, chronic fatigue syndrome, icd classification system, icd-11, ICD-11 MMS, myalgic encephalomyelitis, postviral fatigue syndrome, suzy chapman
Why is this proposal for the G93.3 legacy terms for ICD-11 so important?
Post #336 Shortlink: http://wp.me/pKrrB-4hc
A copy of this post in PDF format is available here
1 Why is this proposal for ICD-11 so important?
1.1 The International Statistical Classification of Diseases and Related Health Problems (ICD) is the standard diagnostic classification of diseases for use in epidemiology, health management, clinical practice and reimbursement. ICD-10 has been translated into 43 languages and is used by WHO member states in over 100 countries.
It provides a common language for reporting and monitoring the incidence and prevalence of diseases and other health problems. This allows for global comparison and data sharing in a consistent, standardized way between hospitals, regions and countries and over periods of time.
ICD is used to report and summarize an episode of care after the event. Data recorded on many types of medical information and other records, including death certificates, provides the basis for analyses of national mortality and morbidity statistics by WHO member states, which are used to inform decision-makers and commissioners and to monitor health related spending.
Users include physicians, nurses, allied health care providers, researchers, health information managers and technology workers, coders, policy-makers and insurers [1].
1 World Health Organization
ICD-11 is an electronic product designed to be used in computerized health information systems and will link to other globally used clinical terminology systems, like SNOMED CT.
Inappropriate classification of the G93.3 "legacy" categories for ICD-11 will negatively influence perceptions of the disease and the clinical care that patients receive throughout the world ‒ with implications for service commissioning, the types of medical investigations and treatments that clinicians are prepared to consider and medical insurers prepared to fund, the provision of welfare benefits, social care, disability adaptations, education and workplace accommodations.
It is crucial that international organizations, their clinical and research allies and patient and advocate stakeholders take some time to review our proposal, register with the Beta draft and submit a considered response. Over 45 stakeholder organizations have already commented in support.
1.2 After four years of uncertainty, it's important that the G93.3 "legacy" terms are included and appropriately classified for the initial 2018 release of ICD-11
Although revision of ICD-10 has been underway since 2007, the work group with responsibility for the G93.3 categories has yet to reach consensus over how these terms should be classified for the new edition. Since early 2013, there have been no proposals in the public version of the ICD-11 Beta draft for stakeholders to review, input into or comment on.
The terms were finally restored to the Beta draft on March 26, but with this caveat: "While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD."
Evidently, the work group has not yet reached consensus (or if it has, has not reached consensus with the WHO classification experts and Joint Task Force, to which it reports).
1.3 Why is the timing so critical?
In order to present an initial version of ICD-11 to the World Health Assembly in May 2018, the classification will need to be finalized by the end of this year. For proposals to be considered for inclusion in the 2018 release, they were required to be submitted by a March 30 deadline.
That leaves us with this situation:
virtually no information about what the work group might be considering;
having missed the March 30 deadline, no indication of whether any proposals that might be released by the work group between now and the end of the year would be included in the initial 2018 release or rolled forward for consideration for inclusion in the 2019 release;
if no consensus has been reached before the end of the year, whether the classification would go forward with the "placeholder" listing or whether the terms would be omitted from the initial 2018 release.
Given the uncertainties, it was crucial we submit an alternative option. Stakeholders need to submit comments as soon as possible as it's not clear whether there is a cut off point for consideration of comments on proposals that met the March 30 deadline.
1.4 Classification is important for protection against misdiagnosis and medical mismanagement
Prior to July 2015 (in the case of SNOMED CT) and prior to April 2016 (in the case of the UK Read Codes CTV3 primary care terminology system) both terminology systems had CFS, ME and their synonym terms dual classified under mental health disorders.
The WHO's unmodified ICD-10 does not include CFS in the Tabular List, only in the Index. But in the Tabular List, ICD-10 includes several other coded terms which have been misapplied to CFS and ME patients, notably, the various ICD-10 Somatoform disorders categories and Fatigue syndrome, which is coded to Neurasthenia.
Misapplication of these codes has been used to deny patients access to appropriate medical care, to secondary referrals, investigations, emergency treatment, benefits, social care and disability services and in some cases, used to section patients for psychiatric treatment against their will.
Families are still being referred to social services and child protection agencies. Children and young people continue to be removed from parental care because an existing diagnosis of CFS or ME has been contested or because they have been wrongly diagnosed with "Pervasive refusal syndrome" or as "school refusers," or their parents accused of "Factitious disorder imposed on another."
The Somatoform disorders, Neurasthenia and Fatigue syndrome are being replaced for ICD-11 with a new, single "Bodily distress disorder (BDD)" category which is close to the DSM-5 "Somatic symptom disorder (SSD)." BDD poses the same threat to CFS and ME patients as DSM-5's SSD.
The Netherlands and Germany have witnessed the roll-out of guidelines and services for "MUS" and for "functional somatic syndromes."
Already in use in Denmark, in clinics and research, Per Fink seeks to colonize Europe with the "Bodily distress syndrome" diagnostic construct, which subsumes and replaces CFS, ME, IBS and FM.
Last year, the Ministry of Science and Research, Hamburg, Germany, provided funding for EURONET-SOMA (European Network to improve diagnosis, treatment and health care for patients with persistent somatic symptoms) comprising a panel of 29 researchers from Denmark, the Netherlands, Sweden, Norway, Latvia, Belgium, United Kingdom, Germany and Russia, to develop a joint research agenda and work towards a common understanding of the terminology, conceptualization and management of "persistent somatic symptoms" and for interdisciplinary agreement on a consistent diagnostic classification.
In the UK, "Medically unexplained symptoms (MUS)" and "Persistent physical symptoms (PPS)" services are proliferating. Funding is being made available for integrated IAPT (Improving Access to Psychological Therapies) services delivering CBT and other therapies for "MUS"; in some cases, bids are being invited specifically for developing IAPT CBT or CBT/GET for CFS patients. One NHS Trust had invited Per Fink and his colleagues over to the UK to train up local GPs in the TERM model.
In at least one part of the country, a specialised CFS service has been decommissioned in order to save money and put out to tender for a combined IAPT type service for CFS and chronic pain.
A new "Joint Commissioning Panel for Mental Health Guidance for commissioners of services for people with medically unexplained symptoms" guideline was published in February, in which CFS and ME are included as "functional somatic syndromes" [2].
2 Guidance for commissioners of services for people with medically unexplained symptoms February 2017
The push to commission "MUS" services is relentless. UK patients have reported having their CFS, ME diagnoses challenged by their practitioners and re-diagnosed with "MUS" or with a mental health disorder.
Patients need protection: the G93.3 "legacy" terms must be appropriately classified for ICD-11; safeguarded with reciprocal exclusions for "Fatigue" and "Bodily distress disorder" and not secondary parented under inappropriate chapters or parent classes.
Extract from ICD-11 Beta Proposal Q & A Suzy Chapman, April 2017 version 2
A PDF Q & A for our proposal can be downloaded here
Filed under Bodily distress disorder, Bodily distress syndrome, Chronic fatigue syndrome, Functional Somatic Syndrome (FSS), ICD revision process, ICD-10, ICD-11, ICD-11 Beta Draft, Myalgic encephalomyelitis, Postviral fatigue syndrome, WHO (World Health Organization) Tagged with bodily distress disorder, Bodily distress syndrome, chronic fatigue syndrome, disease classification, icd-11 beta draft, myalgic encephalomyelitis, postviral fatigue syndrome, somatic symptom disorder, suzy chapman, WHO
International support for proposal for G93.3 legacy terms for ICD-11
Post #335 Shortlink: http://wp.me/pKrrB-4gL
The revision of the World Health Organization's ICD-10 and development of ICD-11 was launched in 2007.
After several extensions to the timeline, WHO plans to present a version of ICD-11 at the World Health Assembly, in May 2018, with the intention of releasing the new edition at some point later that year. Endorsement will be sought later.
In order to be ready to present in May 2018, the final round of editing will need to have been completed by the end of 2017.
This November 2016 presentation by WHO's Dr Robert Jakob sets out the targets and timelines, as they had stood last year.
There was a March 30 deadline for submission of proposals for consideration for inclusion in the 2018 version. Proposals received after that date are expected to be rolled forward for consideration for inclusion in the first annual maintenance and update revision of the new edition, in 2019.
On March 27, UK and US advocates, Suzy Chapman and Mary Dimmock, submitted a formal proposal via the ICD-11 Beta draft Proposal Mechanism for the restructure of the ICD-10 G93.3 legacy categories: Postviral fatigue syndrome; Benign myalgic encephalomyelitis; and Chronic fatigue syndrome.
For a summary of the proposal see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two
International stakeholder support
There has been considerable support for the proposal, with over 540 "Agrees." International patient, advocacy and research organizations and individual stakeholders have submitted more than 370 comments.
To date, these organizations have submitted responses:
Hope 4 ME & Fibro Northern Ireland
The Devon ME Support Group
The Welsh Association of ME & CFS Support (WAMES)
Forward-ME A group convened and chaired by the Countess of Mar. The members are:
ME Association
ME Research UK
Action for M.E.
TYMES Trust
reMEmber CFS
Blue Ribbon Awareness of ME (BRAME)
ME Trust
The 25% ME Group
Invest in ME
Open Medicine Foundation
PANDORA Org
NJ CFIDS organization
Solve ME/CFS Initiative
The Massachusetts CFIDS/ME & FM Association
The National ME/FM Action Network (Canada)
ME/FM Society of BC, Canada
Millions Missing Canada
The AQEM (Association québécoise de l'encéphalomyélite myalgique du Québec)
RME The Swedish Association for ME
Norges Myalgisk Encefalopati Forening (Norway)
The Belgian ME Association
The Danish ME Association
Groep ME Den Haag (Netherlands)
ME/cvs Vereniging, Nederland
Deutsche Gesellschaft für ME/CFS (Germany)
Suomen CFS-yhdistys (Finnish CFS Association)
The European ME Alliance (EMEA) The alliance comprises:
Belgium ME/CFS Association
ME Foreningen (Denmark)
Suomen CFS-Yhdistys (Finland)
Finlands CFS-förbund
Fatigatio e.V. (Germany)
Het Alternatief (Netherlands)
Icelandic ME Association
The Irish ME Trust
Norges ME-forening (Norway)
Liga SFC (Spain)
Riksföreningen för ME-patienter (RME) (Sweden)
Verein ME/CFS Schweiz (Switzerland)
Invest in ME (UK)
ME/CFS Australia (SA)
ME/CFS and Lyme Association of WA Committee
NZMEAction, New Zealand
The Japan ME Association
Phoenix Rising. A patient-led and patient-run US 501(c)(3) non-profit organization which hosts the world's largest internet forum for ME/CFS patients
Facebook groups and other groups
Race to Solve ME/CFS
M.E. Alliance
Global Advocates for ME
Friends for Honesty about ME
Support for the Followers of Dr Myhill's Protocol
Viewing our proposal
We are inviting international patient and advocacy organizations and other stakeholders to review and comment on the proposal.
In order to view the proposal in the Proposal Mechanism you will first need to register with the Beta platform (you can register, if you wish, using an existing social media, Yahoo, Google or MS account).
Register for access here: http://bit.ly/ICD11Registrationpage
There is a short tutorial video on how to register, here: http://bit.ly/ICD11regtutorial
When you are registered and logged in, go straight to this page to view and comment on our proposal:
https://icd.who.int/dev11/proposals/f/en#/http://id.who.int/icd/entity/988657115?readOnly=true&action=ComplexHierarchicalChangesProposal&stableProposalGroupId=4b26ab6a-393f-4a39-9051-4ac1d4b1a55a
For ease of access, we've put a copy of our Proposal and Rationale into a PDF, here:
Suzy Chapman, Mary Dimmock Proposal for ICD-11
If you are commenting on behalf of an organization, please state the organization's name and in what capacity.
If you agree with our proposal, the "Agree" button is located directly under the blue Reference links.
If you would like to leave a comment on our proposal, the "add new comment" box is located right at the bottom of the web page, under the most recent comments.
Here is a Q & A addressing some of the questions raised in relation to our proposal:
Q & A version 1, April 2017 http://bit.ly/Proposal111QA
For a summary of our proposal see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two
For background to Part Two see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part One
Filed under Bodily distress disorder, Bodily distress syndrome, Chronic fatigue syndrome, Functional Somatic Syndrome (FSS), ICD revision process, ICD-10, ICD-11, ICD-11 Beta Draft, Myalgic encephalomyelitis, Postviral fatigue syndrome, WHO (World Health Organization) Tagged with bodily distress disorder, Bodily distress syndrome, chronic fatigue syndrome, disease classification, icd-11 beta draft, ICD-11 MMS, myalgic encephalomyelitis, postviral fatigue syndrome, suzy chapman, WHO