Australian Senate seeks clarifications from ICD Revision

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UK Parliamentary Questions

In February and March, the Countess of Mar tabled Written Questions in the House of Lords seeking clarifications from the World Health Organization (WHO) around ICD Revision’s proposals for the ICD-10 “legacy” terms, postviral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome for ICD-11.

Both responses were as clear as mud and both refer to “chronic fatigue” – a term that exists neither in ICD-10 nor in ICD-11, and a term for which no proposal had been submitted.

You can view those Written Questions and Written Answers here:

HL5683
Written Question: 27 February 2017, Countess of Mar
Department of Health, Neurology

Written Answer: 07 March 2017, Lord O’Shaughnessy

HL6136
Written Question: 20 March 2017, Countess of Mar
Department of Health, Chronic fatigue syndrome

Written Answer: 28 March 2017, Lord O’Shaughnessy

Australian Senate also seeks clarifications

On March 29, Senator Griff (South Australian Senate) requested clarifications around the release date for ICD Revision’s proposals for the classification of the G93.3 legacy terms and the deadline for receipt of stakeholder comments.

A response was provided via the Minister of Health on April 28. These questions and responses will be recorded in the Australian Hansard.

In the context of the Australian Health Minister’s answers, please note the following and also the Notes beneath the copy of the Minister’s response:

1. When the G93.3 legacy terms were restored to the Beta draft on March 26 they were restored 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.
Team WHO 2017-Mar-26 – 12:46 UTC​

2. From the Beta draft Proposal Mechanism (for which registration is required):

Deadline Information for proposals:

Deadline in order to be considered for the final version is 30 March 2017

Comments by Member States and improvements arising as a part of the Quality Assurance mechanism will be included with deadlines later in 2017

3. In this November 2016 slide presentation by WHO’s, Dr Robert Jakob, the deadlines for Member State comments and improvements arising as part of the Quality Assurance mechanism were given as:

2017 Deadline Members State comments (31 May )
2017 Deadline Field testing / quality assurance (30 June)​

4. However, no public information has been available for the deadline for receipt of stakeholder comments in respect of proposals that met the March 30 deadline for consideration for inclusion in the final (2018) version.

Australian Senate Question and Response

SENATE QUESTION
QUESTION NUMBER: 435

DATE ASKED: 29 March 2017
DATE DUE TABLING: 28 April 2017

SENATOR Griff, asked the Minister representing the Minister for Health and Aged Care, upon notice, on 29 March 2017:

With reference to the World Health Organization (WHO) which is currently working on the latest edition of the International Classification of Diseases (ICD-11), and the Australian Collaborating Centre under the auspices of the Australian Institute of Health and Welfare which is coordinating Australia’s part in the latest edition:

1. Can the Minister request that the Joint Task Force responsible for steering the finalisation of the next edition of the WHO International Classification of Diseases to confirm the date by which the Topic Advisory Group for Neurology will release its proposals for the classification of the ICD-10 G93.3 legacy categories: post viral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome, for public scrutiny and comment.

2. Can the Minister confirm the date by which comments on their proposals will be required to be submitted for the consideration of the Joint Task Force.

3. Can the Minister detail what the Australian Government is doing in terms of research into and treatment for post viral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome.

SENATOR NASH – The Minister for Health has provided the following answer to the Honourable Senator’s question:

1. The World Health Organization (WHO) has released its classification of the International Classification of Diseases (ICD)-10 code G93.3 legacy categories (post viral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome) in ICD-11; they are classified in the same way as they were in ICD-10*. This classification is visible in the draft of the ICD-11 that is available for comment on the WHO’s ICD-11 website. WHO has advised that the final classification in the ICD-11 will be decided based on an extensive scientific review.

WHO has been managing the development of ICD-11 with the advice from advisory groups including the Topic Advisory Group for Neurology and the Joint Task Force. The Topic Advisory Group for Neurology ceased operations in October 2016.

2. WHO has advised that comments on ICD-11 can be provided by anyone at any time through the ICD-11 website. Whilst the deadline for such comments to be made for consideration by WHO in the finalisation of ICD-11 for its release in 2018 was 30 March 2017, comments can be made after that date for consideration for future updates of ICD-11.

3. The National Health and Medical Research Council (NHMRC) has provided $1.6 million of research funding towards myalgic encephalomyelitis, chronic fatigue syndrome and other related fatigue states (ME/CFS) collectively since 1999.

NHMRC has created an online pathway for community and professional groups to propose ideas for health research topics and questions, which NHMRC may develop into a targeted call for research to invite grant applications. A targeted call for research is a one-time request for grant applications to advance research in a particular area of health and medicine that will benefit Australians. A submission on ME/CFS had been received through this pathway and is under consideration.

NHMRC staff are also in communication with the ME/CFS Action Group to discuss ways evidence based diagnostic and treatment advice can be adapted and applied in Australian clinical practice.​

*Ed: The statement: “…[the terms] are classified in the same way as they were in ICD-10.” is not entirely correct. In ICD-10, chronic fatigue syndrome is not included in the Tabular List. It is listed in the Index, only, and points coders and clinicians to the G93.3 code. In the ICD-11 Beta listing for these terms, as restored (with a caveat) on March 26, both benign myalgic encephalomyelitis and chronic fatigue syndrome are specified as Inclusion terms to Postviral fatigue syndrome in both the ICD-11 Foundation and MMS Linearization (the ICD-11 equivalent of the Tabular List).

 

Notes:

This Australian Senate Response would appear to clarify the following:

a) that despite nearly 10 years in development and with ICD-11 MMS due to be finalized by the end of this year, ICD Revision has still not reached consensus over the proposed classification of these three ICD-10 terms.

b) that the terms’ current placement and hierarchy in the ICD-11 Beta (as restored to the draft on March 26) may change between now and the end of this year or between now and the first scheduled annual maintenance and update revision (which would be expected in 2019, if ICD-11 is released in 2018).

In order to be ready to present an initial version of ICD-11 to the WHA assembly in May 2018, the draft will need to be finalized by the end of 2017. See: Presentation with targets and timelines

If consensus were to be reached before the end of 2017, the Response does not clarify whether revised proposals would be entered into the Proposal Mechanism for public scrutiny and comment (or for how long) or would by-pass the Proposal Mechanism and be entered directly into the Beta draft as “Approved” and “Implemented” for incorporation into the final (2018) draft.

Or, having missed the March 30 deadline for consideration for inclusion in the initial 2018 release, whether any revised proposals released before the end of 2017 would need to be carried forward for consideration for inclusion in the first annual update in 2019, and if so, whether there would be any opportunity, at that stage, for stakeholder review and comment.

c) The response clarifies that the Topic Advisory Group for Neurology ceased operations in October 2016. Although it was understood that at some point the various Topic Advisory Groups would cease operating, the fact that TAG Neurology was no longer active was not communicated by Dr Robert Jakob or by the Joint Task Force to those of us attempting to obtain crucial information about proposals and deadlines via communications which, in some instances, the Chair of TAG Neurology (Dr Raad Shakir) was being copied into.

 

Two new ICD-11 advisory committees are expected to take over from the Joint Task Force:

Classification and Statistics Advisory Committee (CSAC) To perform as principal ICD-11 advisory committee, focusing mainly on ICD-11 MMS and its update proposals in mortality and morbidity

Medical and Scientific Advisory Committee (MSAC) To advise on scientific content for the ICD-11, of which advice is to be provided to CSAC

These advisory committees will be involved in the annual maintenance and update framework for ICD-11, once it has been released.

The Medical Scientific Advisory Committee (MSAC) was launched at the ICD-11 Revision Conference in 2016 and is expected to comprise approximately 6-10 experts selected by WHO. Dr Christopher Chute, who had chaired the ICD Revision Steering Group from 2010-2016, is a Co-Chair for the MSAC. Membership lists for MSAC and CSAC are not currently available and these new committees may still be in the process of being assembled.

It is possible that MASC and CSAC may be involved in final decisions about these terms, especially if consensus is not reached before the end of 2017.

 

Four day commenting window

The three terms were restored to the Beta draft on Sunday, March 26, when my long-standing proposals for exclusions under “Fatigue” were also partially approved and implemented, together with a somewhat opaque caveat posted by a Beta admin that prompted me to request clarification from Dr Jakob for its meaning.

Dr Jakob confirmed that the three terms had been restored to the Beta draft on March 26. But the restoration of the terms under parent, Other disorders of the nervous system was not viewable in the public version of the Beta until midday on Monday, March 27, because the public version of the platform had not been updated over the weekend and neither had the Print Versions or the Print Version of the Index.

This meant that having finally been restored to the draft, after a four year absence, the terms were viewable and open for comment by stakeholders for barely 4 days before the March 30 proposal and comment deadline was reached.

This also implies that several hundred stakeholder comments submitted after March 30 in response to the proposal submitted by myself and Mary Dimmock may have been submitted too late to be considered in the context of proposals that had met the March 30 deadline (which ours did) and may potentially be rolled forward for future consideration.

In February, I had asked Dr Robert Jakob and the Co-Chairs of the Joint Task Force three or four times if they would clarify by what date comments on proposals that met the March 30 deadline would need to be submitted – information that was vital for all public stakeholders planning to submit comment on Beta draft proposals – but these requests for clarification were sidestepped by both Dr Jakob and the Joint Task Force.

Stakeholders and stakeholder organizations should not be discouraged from submitting comments if they have not already done so.

The handling of these terms by ICD Revision (which included a four year period during which stakeholders were disenfranchised from the revision process – unable to scrutinize and comment on proposals because the terms had been inexplicably removed from the draft) and the cavalier and frequently obfuscatory manner in which stakeholder enquiries have been fielded, reflects very poorly on the WHO’s vision of an “open and transparent” revision process that is “inclusive of stakeholder participation” and on the WHO, in general.

PDF Questions tabled by Senator Griff (March 29, 2017) and Minister’s Response (April 28, 2017)


Key links

For a summary of our proposal and links for submitting comment via the Beta draft see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two

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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

Key links

For a summary of our proposal and links for submitting comment via the Beta draft see: A proposal for the ICD-10 G93.3 legacy terms for ICD-11: Part Two

A PDF Q & A for our proposal can be downloaded here

A copy of this post in PDF format is available here

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:

UK
Invest in ME Research
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

USA
Open Medicine Foundation
PANDORA Org
NJ CFIDS organization
Solve ME/CFS Initiative
The Massachusetts CFIDS/ME & FM Association

Canada
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)

EU
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)

Australia
ME/CFS Australia (SA)
ME/CFS and Lyme Association of WA Committee

New Zealand
NZMEAction, New Zealand

Other International
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: http://bit.ly/commentICD11

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

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Forward-ME group: “M.E. must continue to be classified as neurological”

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From the News pages of Action for M.E.

M.E. must continue to be classified as neurological

April 24, 2017

Action for M.E. has collaborated with other Forward M.E. charities to strongly support the call for M.E. to continue being classified as a neurological condition by the World Health Organisation (WHO).

In the WHO’s current (10th) edition of the International Classification of Diseases (ICD-10), postviral fatigue syndrome, benign myalgic encephalomyelitis and chronic fatigue syndrome are classified as neurological.

Following uncertainty from the WHO about where these conditions might be listed in the next classification (ICD-11), which is currently being drafted, UK and US advocates Suzy Chapman and Mary Dimmock have prepared a detailed proposal recommending:

  • keeping the titles of M.E., Chronic Fatigue Syndrome (CFS) and Postviral Fatigue Syndrome in the chapter ‘Diseases of the nervous system’
  • having separate entries for M.E. and for CFS
  • referring to M.E. as ‘Myalgic encephalomyelitis,’ where previously it had been called ‘Benign myalgic encephalomyelitis.’

You can read about this in more detail on Suzy’s dx revision watch website.

Having been contacted by Suzy and Mary, we have worked with other Forward M.E. charities to prepare a statement that supports their proposal, and jointly submitted it to the WHO as Forward M.E., supported by the group’s Chair, the Countess of Mar.

As part of the statement, we say: “We are aware that some patients are being referred to services for ‘medically unexplained symptoms’, under the mistaken assumption that M.E. is a ‘functional somatic syndrome.’ Indeed, the Joint Commissioning Panel for Mental Health (England) has recently published guidance stating that ‘Chronic Fatigue Syndrome/Myalgic Encephalomyelitis’ is a ‘functional somatic syndrome.’

“As the evidence gathered by this proposal so clearly demonstrates, this illness is a ‘serious, chronic, complex, and multisystem disease’ that causes significant impairment – including neurological, cognitive, immunological, autonomic and energy metabolism disorder. We consider that it is vital that the WHO ICD continues to provide a bulwark against medical mismanagement of M.E. patients.”

Forward M.E.’s full statement can be accessed online. If you register for an account, the proposal and statement can also be found in full on the ICD-11 forum.

What is the ICD-11?

Published by the World Health Organisation, the International Classification of Diseases is a system of diagnostic codes for classifying diseases, designed to map health conditions, and their specific variations, to larger and more general categories. Currently in its tenth revision (ICD-10, published in 1992), it is subject to minor annual updates and major triennial updates. ICD-11 was planned for 2017, but has been pushed back to 2018.

What are “medically unexplained symptoms”?

In February, the Joint Commissioning Panel for Mental Health published guidance for mental health commissioners, stating that M.E. is a functional somatic syndrome, and recommends a referral to services for patients with Medically Unexplained Symptoms (MUS).

Action for M.E. absolutely does not support this recommendation, and we are extremely concerned by the impact that we are beginning to see on people with M.E.

Some of you have got in touch to tell us that you are being challenged by your healthcare professional as to the validity of your M.E. diagnosis, and instead being told that you have MUS.

If this experience is familiar to you, or you are concerned by the definition of M.E. used by your healthcare professional, please contact us (p 2).

We would advise anyone faced with this to make it clear that:

  • M.E. is not MUS, and categorising it as such contradicts the World Health Organisation’s International Classification of Diseases, which states that M.E. is a neurological condition.
  • the NICE guideline makes it clear that specialist services for M.E. are likely to be needed by a significant number of people with the condition; it is likely that the approach offered by MUS services would be inappropriate in many cases
  • a considerable body of published, peer-reviewed evidence, as comprehensively referenced by the 2015 Institute of Medicine report, indicates growing evidence of potential neurological, immunological and endocrinological biomarkers in M.E. The report concluded (p 209) that: “It is clear from the evidence compiled by the committee that M.E./CFS is a serious, chronic, complex, multisystem disease that frequently and dramatically limits the activities of affected patients.”

Action for M.E. is undertaking work to highlight this to health professionals and policy-makers, and can offer information and support to anyone being referred to services they feel are inappropriate.

[Ends]


Click here for a PDF of the text of the Foward-ME response with key links.

Viewing our proposal

We’re inviting international patient and advocacy organizations and other stakeholders to review and comment on our proposal.

In order to view our 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

Once you are registered and logged in, go straight to this page to view and comment on our proposal: http://bit.ly/commentICD11

For ease of access, we’ve put a copy of our Proposal and Rationale into a PDF, which you can download 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 Comment box is located right at the bottom of the web page, under the most recent comment.

Here is a Q & A addressing some of the questions raised in relation to our proposal:

Q & A version 1, April 2017

Proposal for the ICD-10 G93.3 legacy terms for ICD-11, submitted by Suzy Chapman and Mary Dimmock on March 27, 2017

PDF: 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

Forward-ME Group backs proposal for G93.3 legacy terms for ICD-11

Post #333 Shortlink: http://wp.me/pKrrB-4gv

Forward-ME is a group of UK charities and voluntary organisations convened by the Countess of Mar, in order to promote effective joint working by M.E. and CFS organisations.

The organisations 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, and Invest in ME.

 

From the News pages of the ME Association

Forward-ME Group | ‘Vital that the new WHO classification continues to provide a bulwark against medical mismanagement of M.E.’ | 21 April 2017

The Forward-ME Group has responded to the latest proposals to update the classification of M.E. and CFS in the World Health Organisation’s next version of the International Classification of Diseases (ICD-11). Implicit in their comments below is recognition of the huge amount of work put into this project by ME/CFS advocates Suzy Chapman and Mary Dimmock.


THE FORWARD-ME GROUP STATEMENT BEGINS HERE

Forward-ME is a group of UK charities and voluntary organisations convened by the Countess of Mar, in order to promote effective joint working by M.E. and CFS organisations.

The organisations 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, and Invest in ME.

We are in agreement that, as proposed here, it is particularly important for Myalgic encephalomyelitis (M.E.) and Postviral fatigue syndrome – presently classified in the Chapter on Diseases of the nervous system [at G93.3] – to be retained in that chapter of the forthcoming ICD-11.

Along with commending the proposal’s intention to highlight and reinforce the severe and devastating impact of M.E., we would like to draw attention to the body of scientific material referred to in the rationale for the proposal [Rationale point 1: Scientific evidence that exists for neurological dysfunction; Rationale point 2: Recent federal agency reviews and scientific evidence].

This reflects growing evidence of neurological, immunological and endocrinological dysfunction and related biomarkers. However, we agree that current scientific evidence of neurological impairment and WHO/ICD Revision’s position on precedence [i.e. “legacy should trump with regard to the question of moving certain conditions to new chapters”] supports retention of chronic fatigue syndrome and myalgic encephalomyelitis in Diseases of the nervous system.

We support the proposal to move Postviral fatigue syndrome to a synonym under the Concept Title ‘Myalgic encephalomyelitis’. This recognises that not all instances of M.E. may result from a viral infection. We also agree with the proposed removal of the word ‘benign’ from the M.E. title, in keeping with the considerable medical complexity of this condition and its severe and lasting impact on patients.

The position in respect of ‘Chronic fatigue syndrome’ (CFS) is more complex:

  • CFS is listed in the WHO ICD-10 index only.
  • It is indexed to G93.3. Yet in practice the label ‘CFS’ is applied variably – both in research (with a multiplicity of definitions in use) and clinically.

Given the placement of ‘Fatigue syndrome’ in the WHO ICD-10 Mental and behavioural chapter [as a synonym under ‘Neurasthenia’ at F48.0], it was all but inevitable that the introduction of the term ‘Chronic fatigue syndrome’ to apply to a physical illness would cause confusion.

The confusion has a considerable impact on patients. For example, we are aware that some patients are being referred to services for ‘medically unexplained symptoms’, under the mistaken assumption that M.E. is a ‘functional somatic syndrome’. Indeed, the Joint Commissioning Panel for Mental Health (England) has recently published guidance stating that ‘Chronic Fatigue Syndrome/Myalgic Encephalomyelitis’ is a ‘functional somatic syndrome’ [Guidance for commissioners of services for people with medically unexplained symptoms 2017].

As the evidence gathered by this proposal so clearly demonstrates, this illness is a “serious, chronic, complex, and multisystem disease” that causes significant impairment – including neurological, cognitive, immunological, autonomic and energy metabolism disorder. We consider that it is vital that the WHO ICD continues to provide a bulwark against medical mismanagement of M.E. patients.

In this regard securing appropriate exclusions is vital, and we endorse the proposal’s recommendations, as set out at Note 4. In particular, we note that the ICD revision intends that the F48.0 Neurasthenia category [where ‘Fatigue syndrome’ presently appears], together with almost all of the present F45 somatoform disorder categories, be subsumed in a single new category – currently suggested name ‘Bodily distress disorder’. We agree that there needs to be reciprocal exclusions for M.E. and for CFS for the ‘Bodily distress disorder’ category.

We also agree that reciprocal exclusions for M.E. and for CFS for the category ‘Fatigue’ [previously ‘Malaise and fatigue’] are essential.

[Ends]


Click here for a PDF of the text of the Foward-ME response with key links.

Viewing our proposal

We’re inviting international patient and advocacy organizations and other stakeholders to review and comment on our proposal.

In order to view our 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

Once you are registered and logged in, go straight to this page to view and comment on our proposal: http://bit.ly/commentICD11

For ease of access, we’ve put a copy of our Proposal and Rationale into a PDF, which you can download 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 Comment box is located right at the bottom of the web page, under the most recent comment.

Here is a Q & A addressing some of the questions raised in relation to our proposal:

Q & A version 1, April 2017

Proposal for the ICD-10 G93.3 legacy terms for ICD-11, submitted by Suzy Chapman and Mary Dimmock on March 27, 2017

PDF: 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

Q and A for Proposal for the ICD-10 G93.3 legacy terms for ICD-11

Post #332 Shortlink: http://wp.me/pKrrB-4g2

To ensure that the ICD-10 G93.3 legacy categories are present and appropriately classified in ICD-11, U.S. advocate Mary Dimmock and I submitted a formal and fully referenced proposal on March 27, 2017.

Here is a Q & A addressing some of the questions raised in relation to our proposal:

Q & A version 1, April 2017

Proposal for the ICD-10 G93.3 legacy terms for ICD-11, submitted by Suzy Chapman and Mary Dimmock on March 27, 2017

PDF: http://bit.ly/Proposal111QA

 

Q & A version 1 covers:

Q1: Your proposal for ICD-11 does not recommend retiring CFS. Why is that?
Q2: Are PVFS, (Benign) ME and CFS classified the same across all versions of ICD-10?
Q3: How is ICD Revision proposing to classify the G93.3 legacy terms?
Q4: Is there any proposal to classify the terms under Mental or behavioural disorders?
Q5: Will ICD-11 look and function differently to ICD-10?
Q6: What is the implementation date for ICD-11?
Q7: Is ICD-11’s “Bodily distress disorder” the same as Fink’s “Bodily distress syndrome”?
Q8: Where can I view the Beta draft and comment on your proposal?

 

Our proposal recommends:

  • that the terms should be retained in the neurological chapter (Chapter 08: Diseases of the nervous system);
  • that the terms should be retained under the parent class: Other disorders of the nervous system;
  • that ME and CFS should each be assigned separate codes;
  • that PVFS is not an appropriate title term for ME to sit under (not all cases of ME are preceded by a virus).

We’ve also recommended:

  • reciprocal exclusions for “Bodily distress disorder” and for general Fatigue;
  • that the designation “Benign” should be dropped for ICD-11.

Our proposed restructure for ICD-11 looks like this:

Viewing our proposal

In order to view our Proposal in the Beta “Proposal Mechanism” you will first need to register with the Beta platform (this only takes a minute or two and 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 WHO tutorial video on how to register, here: http://bit.ly/ICD11regtutorial

Once you are registered and logged in, go straight to this page to view and comment on our Proposal: http://bit.ly/commentICD11

For ease of access, we’ve put a copy of our Proposal and Rationale into a PDF, which you can download here:

Suzy Chapman, Mary Dimmock Proposal for ICD-11

We’re inviting patient and advocacy organizations and other stakeholders to review and comment on our Proposal.

Comments will only be accepted via the Beta “Proposal Mechanism” – so don’t send comments directly to ICD Revision.

If you are commenting on behalf of an organization, please state the organization’s name and in what capacity.

The Comment box for our proposal is located right at the bottom of the web page:

Click here for larger version

You won’t be able to edit or delete your comment once it’s been submitted ‒ so you may want to prepare a draft, first. You can include references to papers, reports etc in support of your comments but you won’t be able to upload files ‒ and it’s a plain text field only.

At the moment, it’s not clear what date comments on proposals will need to be received by in order to be taken into consideration for the version of ICD-11 that is scheduled for release in 2018. But we are recommending that comments are submitted within the next couple of weeks.

As well as commenting on our proposal, now that ICD Revision has restored the three terms to the draft, you may also comment on how the draft currently stands, here: http://bit.ly/2o8lhMA

Click here for larger version

If you have an queries please contact Suzy Chapman via the Contact Form.

Here’s the PDF again Suzy Chapman, Mary Dimmock Proposal for ICD-11

And here’s the URL again for our proposal on the Beta draft Proposal Mechanism

For a good overview of ICD-11’s structure and functionality by NHS Digital click here

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