ICD-11 status reports: G93.3 legacy terms: PVFS, BME, CFS

[Dx Revision Watch]

I have written this two page PDF as a post for my site and for use on other platforms. I will add this text to the next version of the Q & A document that I published last week.

PDF: http://bit.ly/2q9CqTO

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 summarise 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].

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.

1 World Health Organization http://www.who.int/classifications/icd/revision/icd11faq/en/


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 reached consensus or 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.
​

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 does include 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 a 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 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 "functional somatic syndromes." Already in use in Denmark, in clinics and research, Per Fink
seeks to colonize Europe with "Bodily distress syndrome," which subsumes 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 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."

The push to commission "MUS" services is relentless. UK patients have reported having their
CFS, ME diagnoses challenged 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

 

[Mark]

Phoenix Rising has posted its comment on the proposal submitted to WHO by Suzy Chapman and Mary Dimmock for including our disease in ICD11 (International Classification of Diseases – 11th edition).

The World Health Organization’s (WHO) ICD10 included CFS, ME, and PVFS in the Neurological Chapter, with PVFS as the lead term. ICD11 is an update to ICD10, and is scheduled for pre-implementation release in 2018. Member countries typically take several years after that to require conversion to the new system.

Unfortunately, CFS, ME and PVFS (Post Viral Fatigue Syndrome) were removed from ICD11 Beta for 4 years. Suzy Chapman has been trying to convince the WHO to include these terms in the ICD11 for four years. Suzy and Mary Dimmock have submitted a proposal to re-establish these terms. The purpose of their proposal is not to settle all the controversies because that would require additional research. A primary goal is to make sure that the disease is not placed in the “Mental, Behavioral, or Neuro-developmental Disorders” chapter or in the “Symptoms” chapter. For now, it needs to remain in the Neurological Disorders chapter, because we currently lack sufficient scientific evidence to make a case for any other chapter (e.g., metabolic or immunological).

The proposal recommends that CFS and ME both be left in the Neurological chapter but be given different codes. The reason for this is that Oxford, Fukuda and Reeves definitions of CFS do not require PEM, and PEM is the hallmark of ME. The Canadian, the ME International Consensus Criteria and the IOM clinical definition all require PEM. It’s extremely important to clarify this issue so that research will use appropriate criteria for subject selection. Use of conflicting or loose definitions has made it impossible to interpret and compare research because it is unclear if the subjects even have the disease. We need to stop tolerating research purporting to be investigating this disease in which PEM is not a required inclusion criterion!

We acknowledge that CFS is a terrible name for this disease. We also know that CFS is still used in several countries and people’s ability to get disability benefits relies upon being diagnosed with that term. The WHO is unlikely to allow the addition of the concatenated term, ME/CFS, or to drop the term CFS, since it is being used in member countries. Further research is required to resolve the issue of the name. For now, we need to make sure the disease is in the ICD11, that it is listed in the Neurological Chapter (not in the mental health or symptoms chapters), and that the definitions are clarified.

Phoenix Rising has therefore submitted the following comment in support of Suzy and Mary’s proposal to WHO:

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, supports the proposal by Chapman and Dimmock for the handling of the ICD-10 G93.3 terms in the ICD-11 for the following reasons:

• Continue to classify as neurological until such time as research indicates a more appropriate classification. There is active research into the multi-system dysfunction of this disease, including immunological, autonomic, neurological and energy metabolism impairment. However, that research has not advanced sufficiently to be able to determine the ultimate cause of this disease or to recommend a specific location in another ICD chapter. Until such time that research supports a more appropriate classification, these three terms should continue to be classified in the neurological chapter, as was done in ICD-10. As Chapman and Dimmock demonstrated, there is sufficient evidence to support the neurological classification in the meantime. Further, the IOM clearly noted that this disease is not a psychological problem. Given this and other evidence about the biological pathology, these terms should not be classified in, or secondary parented to, either the mental health chapter or the symptoms chapter in the ICD-11.

• Remove "postviral fatigue syndrome" as the lead term. The term “postviral fatigue syndrome” is not appropriate as a lead term for the terms “chronic fatigue syndrome” and “myalgic encephalomyelitis” because research has demonstrated that not all cases are postviral. Using "postviral fatigue syndrome" as the lead term has led doctors to miss the diagnosis of patients with non-viral triggers.

• Elevate “chronic fatigue syndrome” and “myalgic encephalomyelitis” to concept titles and give them separate codes. As recent reports by the IOM and the NIH have noted, the CFS definitions (the 1991 Oxford, 1994 Fukuda, and 2005 Reeves) do not require PEM, the hallmark symptom of ME. Because of these definitional differences, the IOM report said that a "a diagnosis of CFS is not equivalent to a diagnosis of ME." Therefore, the terms “chronic fatigue syndrome” and “myalgic encephalomyelitis” should be elevated to concept titles and should be given separate codes. Elevating these terms to concept titles and providing separate codes is necessary for correct disease tracking and accurate population statistics.

• Make "postviral fatigue syndrome" a synonym of "myalgic encephalomyelitis". We recommend that the term "postviral fatigue syndrome" should be listed under Synonyms under "myalgic encephalomyelitis".

• Remove the word "benign" from the term "benign myalgic encephalomyelitis". When originally entered into the ICD, the term for myalgic encephalomyelitis was designated as “benign myalgic encephalomyelitis” because it was believed to not cause death. However, there is nothing benign about this disease and it can result in death. The term "benign myalgic encephalomyelitis" should be replaced with "myalgic encephalomyelitis."

• Add reciprocal exclusions between the terms "Chronic fatigue syndrome” and “Myalgic encephalomyelitis” and the terms “Fatigue” and "Bodily distress disorder". A number of published sources have conflated “chronic fatigue syndrome” and/or “myalgic encephalomyelitis” with conditions such as "somatoform disorder", "functional somatic syndrome", "bodily distress disorder" and "neurasthenia" all treated as mental health conditions. This includes a 2017 U.K. Joint Commissioning Panel for Mental Health (JCPMH) on MUS (medically unexplained symptoms), in which chronic fatigue syndrome is listed as an example of functional somatic syndromes. It also includes the CTV3 version of the Read Codes (used in UK primary care) which, prior to April 2016, had dual-classified CFS as both a neurological disorder and a sub class under neurasthenia. This conflation has created a significant risk of inappropriate clinical care for patients. Therefore, to protect patients, we strongly recommend that reciprocal exclusions be added between the terms “Chronic fatigue syndrome” and “Myalgic encephalomyelitis” and the terms “Fatigue” (as was done in ICD-10) and "Bodily distress disorder".

Mark Berry, Acting CEO, On behalf of the Board of Directors

 

[Dx Revision Watch]

...Unfortunately, CFS, ME and PVFS (Post Viral Fatigue Syndrome) were removed from ICD11 Beta for 4 years. Suzy Chapman has been trying to convince the WHO to include these terms in the ICD11 for four years. Suzy and Mary Dimmock have submitted a proposal to re-establish these terms.

Thank you Mark and Phoenix Rising board for submitting an excellent response.

I hope you won't mind my clarifying the following:

Although the G93.3 terms were removed from the public version of the ICD-11 Beta platform in early 2013, the terms were restored to the Beta draft on March 26.

Postviral fatigue syndrome is currently listed under the Neurology chapter, under parent class, "Other disorders of the nervous system."

• Benign myalgic encephalomyelitis
• chronic fatigue syndrome

are specified as inclusion terms to Postviral fatigue syndrome.

The listing in the Beta draft, as restored on March 26, can be viewed here:

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/569175314

and here:

http://apps.who.int/classifications/icd11/browse/l-m/en#/http://id.who.int/icd/entity/569175314

The terms were restored to more or less how the Beta draft had stood in 2009, before the Alpha and Beta phases were launched, rather than how the terms had been listed in early 2013 (which at that point, had CFS as the lead term, with BME specified as the single inclusion term and PVFS deprecated to the Synonyms list).

On the same day, an outstanding proposal of mine from December 30, 2014, proposing exclusions for both BME and CFS under Fatigue (was Malaise and fatigue in ICD-10) was approved.

A third proposal from December 30, 2014, for an exclusion for PVFS under Fatigue has not yet been approved and I have requested a rationale for this apparent anomaly.

(ICD Revision may possibly have been considering locating just PVFS under Fatigue or under another parent class, in the Symptoms, signs chapter, which might account for why PVFS has not yet been approved as an exclusion under Fatigue - but we don't know, as they have not replied to my request for clarification.)

The terms were restored to the draft, on March 26, with this caveat posted by the ICD Revision admins:

“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​

Evidently, the work group has not yet reached consensus (or if it has, has not yet reached consensus with the WHO classification experts and the Joint Task Force, to which it reports).

Note that final decisions are made by the WHO classification experts and the Joint Task Force, not by the chairs and managing editors for the various Topic Advisory Groups (TAGs). So whatever Topic Advisory Group for Neurology proposes, this will also need the approval of Dr Robert Jakob and his WHO/ICD Revision colleagues and also the Joint Task Force - if the TAG's proposals are referred on to the Joint Task Force for their input and consideration.

We should therefore consider the current listing as a "placeholder" and anticipate the release of additional proposals between now and the end of the year, when consensus has been reached.

ICD Revision will need to finalize by the end of the year, to be ready to present to WHA in May 2018. There was a proposals deadline of March 30.

Having missed the March 30 deadline, there is no indication of whether any proposals that might be released by the TAG group between now and the end of the year would be included in the initial 2018 release or would have to be rolled forward for consideration for inclusion in the 2019 release.

Furthermore, if no consensus has been reached before the end of the year, it's not clear whether the classification would go forward with the “placeholder” listing or whether the terms as they currently stand would be omitted from the initial 2018 release until consensus has been reached.

No country is going to be ready to implement the 2018 release or the 2019 release.

There is no evidence that ICD Revision does not intend to include the terms for ICD-11, at all.

The issue has been:

• that for four years, until their restoration on March 26, there had been no terms in the public version of the draft for stakeholders to scrutinize and comment on;

• that it is still unclear what they may be intending to propose and whether they will reach consensus in time for the release of the initial version of ICD-11, in 2018.

A primary goal is to make sure that the disease is not placed in the “Mental, Behavioral, or Neuro-developmental Disorders” chapter or in the “Symptoms” chapter. For now, it needs to remain in the Neurological Disorders chapter, because we currently lack sufficient scientific evidence to make a case for any other chapter (e.g., metabolic or immunological).

WHO/ICD Revision has stated four times, in writing and verbally, that there is no intention and no proposal to classify the terms under the Mental, behavioural or neurodevelopmental disorders chapter.

We are, however, concerned about whether there is or has been an intention to propose to place one or more of the terms under the Symptoms, signs chapter and also that none of the terms are secondary parented to inappropriate chapters or under inappropriate parent classes.

I have in writing from WHO's Dr Robert Jakob (personal email, March 17, 2017):

" As discussed earlier, chronic fatigue syndrome will not be lumped into the chapter ‘signs and symptoms’. We certainly will share the rationale for any decision."

But that does not clarify what the intentions might be for PVFS and BME; though it does suggest that they may still be considering making CFS the lead term.

We are also concerned (based on a communication from Dr Christopher Chute, personal email, February 22, 2017) about whether one or more of the terms may be under consideration for listing in the Index, only.

Suzy

 

[Dx Revision Watch]

The Seventieth World Health Assembly is being held on May 22-31, 2017, in Geneva, Switzerland.

At this assembly, WHO/ICD Revision will deliver a report on the progress of ICD-11 and is anticipated to confirm that the schedule for finalization of a version of ICD-11 by the end of 2017 for presentation to the WHA in May 2018, still stands.

Having been presented in May 2018, the current plan is to release a stable version of the new edition at some point in 2018. The first annual update and revision would be in 2019.

Endorsement of ICD-11 is not being sought in 2018 since the ICD-11 product won't be finished by then and because Member States will require several years to evaluate the new edition and prepare their systems for implementation.

In the meantime, Member States will continue to use and collect data via ICD-10.

Transitioning from ICD-10 to ICD-11 will be a far more complex process than the transition from ICD-9 to ICD-10 had been, as ICD-11 is a computerized health information product which contains far more data than ICD-10 and which will link to SNOMED CT and to some other medical record and information systems.

Also at this 70th World Health Assembly, the new WHO Director-General will be elected from up to three nominations, as Dr Margaret Chan ends her term, this year. Member States will vote in a new Director-General, who will take office on July 1, 2017.

It is not entirely out of the question that a further postponement of ICD-11's presentation to WHA in May 2018 might be proposed.

If WHO/ICD Revision are considering postponing release until after 2018 and adjusting the targets and timelines, this could have implications for the consideration of our proposal and on how much longer TAG Neurology takes to release consensus proposals, since there would not be the imperative to finalize the draft by the end of 2017.

Last time I counted (around three weeks ago), there were more than 900 outstanding proposals queued in the Proposal Mechanism for review, implementation and incorporation (or rejection) into the Beta draft.

But there is a great deal of other work to be accomplished in other areas of the product, if they are going to meet the target of a May 2018 presentation to WHA and a release later that year.

This presentation by Dr Robert Jacob which sets out targets and timelines, as they had stood, in November 2016:

PDF:

ICD-11, Robert Jakob, WHO November 2016

https://circabc.europa.eu/webdav/Ci...ng Group 2016/Presentations/9. WHO_ICD-11.pdf

 

[Dx Revision Watch]

@Mark I have compiled a list of all organizations that have commented, to date, via the Beta draft Proposal Mechanism in support of our proposal in this post on my Dx Revision Watch site:

International support for proposal for G93.3 legacy terms for ICD-11

http://wp.me/pKrrB-4gL

I have listed Phoenix Rising under


Other International

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


Thank you again for your board's support, this is very much appreciated.

Suzy

 

[Mark]

@Mark I have compiled a list of all organizations that have commented, to date, via the Beta draft Proposal Mechanism in support of our proposal in this post on my Dx Revision Watch site:

International support for proposal for G93.3 legacy terms for ICD-11

http://wp.me/pKrrB-4gL

I have listed Phoenix Rising under


Other International

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


Thank you again for your board's support, this is very much appreciated.

Suzy

You're more than welcome Suzy - huge thanks to you and to Mary for the incredible work you've done on this issue over the last several years.

We're constituted as a US non-profit of course, but our membership is international so it's always an open question whether to list ourselves as US or as international. I'm quite happy for us to be listed as international, I think that reflects the reality better and we've always seen ourselves as an international organization.

And thanks for the clarification above; the complexity of this process can be intimidating and we're all really grateful that you have been working so hard to stay on top of the detail.

 

[Dx Revision Watch]

You're more than welcome Suzy - huge thanks to you and to Mary for the incredible work you've done on this issue over the last several years.

We're constituted as a US non-profit of course, but our membership is international so it's always an open question whether to list ourselves as US or as international. I'm quite happy for us to be listed as international, I think that reflects the reality better and we've always seen ourselves as an international organization.

And thanks for the clarification above; the complexity of this process can be intimidating and we're all really grateful that you have been working so hard to stay on top of the detail.

Thank Mark, for your kind words.

The Welsh Association of ME & CFS Support (WAMES) posted a comment, today,:

The Welsh Association of ME & CFS Support (WAMES) supports the proposal for the ICD-11 revision submitted by Chapman and Dimmock on 27th March 2017.

WAMES agrees that Myalgic encephalomyelitis (ME) and Postviral fatigue syndrome should continue to be classified at G93.3 in the chapter on Diseases of the nervous system. Although research has found dysfunction in a number of the body’s systems (e.g. neurological, immune, endocrine, autonomic) there is significant Central Nervous System involvement and unless research provides a clearer and different picture of the aetiology of the condition, it should not be moved. In addition, the symptoms often present in a similar way to other neurological conditions (e.g. MS) so it fits naturally in this category.

We agree that the term “Chronic Fatigue Syndrome” and “Myalgic encephalomyelitis” should be the concept titles, with separate codes, as the terms are not always used to mean the same thing and are likely to be increasingly identified with different subgroups of illness. We agree that “Postviral fatigue syndrome” should be removed as a lead term because not all cases are postviral. We also agree that the ICD-10 term “benign myalgic encephalomyelitis” should be modified to “myalgic encephalomyelitis” as the condition is not benign. It is complex and leads to considerable debility.

WAMES believes it is important that ICD-11 should not contribute to the current confusion amongst many health professionals between on the one hand Myalgic encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS), and on the other hand idiopathic chronic fatigue, bodily distress disorder (BDD) / medically unexplained symptoms (MUS) etc. Exclusions for ME and CFS should be noted in the revised section on somatoform disorders in the Mental health section of ICD-11.

www.wames.org.uk Jan Russell, Chair of WAMES​

These organizations have commented in support of our proposal (at April 30, 2017):

 

[Dx Revision Watch]

Questions raised in Australian Senate regarding the G93.3 terms and ICD-11

There is a heavy contingent of Australian reps on the 27 member ICD-11 MMS Joint Task Force.

Of the 22 non WHO Joint Task Force (JTF) members, there are 6 Australian reps.

Dr James Harrison, Director, Research Centre for Injury Studies Flinders University, Adelaide is a Co-Chair.

The other five Australian JTF members are: Ms Vera Dimitropoulos, Executive Manager, Classification Development, National Centre for Classification in Health, University of Sydney; Ms Anne Elsworthy, Manager, Classification Standards, Independent Hospital Pricing Authority, Sydney; Mr James Eynstone-Hinkins, Director, Health and Vital Statistics, Australian Bureau of Statistics/Australian Collaborating Centre; Ms Jenny Hargreaves, Senior Executive, Hospitals, Resourcing & Classifications Group, Australian Institute of Health and Welfare and Observer, Dr Richard Madden, Professor of Health Statistics and Director, National Centre for Classification in Health, University of Sydney.

Australian classification and statistics agencies are well placed for information on the ICD-11 development process and well represented on the Joint Task Force, where they have a 27% presence on a global committee. For comparison, the sole UK member of the Joint Task Force is a dermatology specialist (the Managing Editor for TAG Dermatology) and a non voting Observer.


I mentioned several weeks ago that I was anticipating oral or written questions might be raised in the Australian Senate requesting clarifications around the G93.3 legacy terms and proposals for ICD-11.

Today, I have been advised that questions were asked, on March 29, by Senator Griff and that a response has been provided by the Minister of Health.

The questions and responses will be recorded in the Australian Hansard, though I don't yet have a URL for the Hansard record. I will edit in when I have the URL.

In the context of the Australian Health Minister's Response, please note the following and also my Notes beneath 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 (posted by a Beta draft admin as a comment to me on a proposal for exclusions under "Fatigue"):

“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:

"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. According to a November 2016 slide presentation given by WHO's, Dr Robert Jakob:

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

4. There has been no public information about the deadline for receipt of stakeholder comments in respect of proposals that met the March 30 deadline for consideration for 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, "...they are classified in the same way as they were in ICD-10." is not strictly correct. In ICD-10, chronic fatigue syndrome is not included in the Tabular List. It is included as an index term, only, that points coders and clinicians to the G93.3 code.

In the ICD-11 Beta listing (as restored to the draft on March 26 with a caveat), both benign myalgic encephalomyelitis and chronic fatigue syndrome are specified as Inclusion terms to Postviral fatigue syndrome in the ICD-11 Foundation and MMS Linearization (the latter being the ICD-11 equivalent of the Tabular List).
---------------------

Notes:

Assuming the Minister has been accurately informed by WHO/ICD Revision, this Response would appear to clarify the following:

a) That after nearly 10 years in development, ICD Revision has still not reached consensus on the classification of these terms for ICD-11 and that the current location and hierarchy in the draft, as the terms were restored on March 26, may be subject to revision between now and the end of the year, or between now and the first annual review and update for ICD-11 (which would be expected to be 2019, if a version of ICD-11 is released in 2018).

The Response does not clarify whether ICD Revision is aiming to reach consensus in time for inclusion of any revised proposals in the initial release, currently scheduled for 2018.

In order to be ready for presentation to WHA in May 2018, the draft will need to be finalized by the end of 2017.

If consensus is reached before the end of 2017, the Response does not clarify whether consensus proposals would be entered into the Proposal Mechanism for public scrutiny and comment (or for how long) or entered directly into the Beta draft as "Approved" and "Implemented." Or, having missed the March 30 deadline, would be carried forward for consideration for inclusion in 2019.


b) The Response clarifies that the Topic Advisory Group for Neurology ceased operations in October 2016 and that responsibility for the classification of these terms now lies with the WHO classification experts and the Joint Task Force, to which TAG Neurology had reported.

That TAG Neurology had ceased operation in October 2016 was not communicated by Dr Robert Jakob or the Joint Task Force to those of us attempting to obtain crucial information about proposals, deadlines etc.

It is understood that the Revision Steering Group also ceased operations in October 2016.

A Medical Scientific Advisory Committee (MSAC)* was launched at the Revision Conference in 2016 which was expected to be comprised of approximately 6-10 experts selected by WHO. The main role of the MSAC will be to advise on scientific content for the ICD-11. It is possible that the MASC may also be involved in final decisions about these terms.) MASC Terms of Reference

*The membership of the ICD-11 Medical Scientific Advisory Committee (MSAC) is not yet known but I have confirmed that Dr Christopher Chute, who had chaired the Revision Steering Group, also chairs or co-chairs the MSAC.

The "CSAC" committee referred to in the MSAC Terms of Reference is the "Classification and Statistics Advisory Committee." Its role will be to perform as principal ICD-11 advisory committee, focusing mainly on ICD-11 MMS and its update proposals in mortality and morbidity.


c) According to Dr Robert Jakob, the terms were restored to the Beta draft on Sunday, March 26, when my proposal for exclusions was also partly approved and implemented and the comment with the caveat left for me by the Beta admin.

The listing of the three terms was not viewable in the public version of the Beta draft until late morning on Monday, March 27 because the public beta had not been updated for several days. This means that the terms were accessible in the public Beta listings, the Print Editions and Index for comment by stakeholders for barely 4 days before the March 30 proposal and comment deadline was reached.

This also implies that comments posted after March 30 in response to the proposal submitted by Mary Dimmock and me on Monday, March 27 may not be considered in the context of proposals for the final version but potentially rolled forward for consideration for the first annual update and review (which would be expected to be 2019). The bulk of the 380 plus comments were posted after March 30.

In early February, I had asked Dr Robert Jakob and the Co-Chairs of the Joint Task Force at least three times to clarify by what date comments on proposals would need to be submitted - information that was vital for all public stakeholders in the Beta draft - but these questions were sidestepped by both Dr Jakob and the Joint Task Force. Stakeholders were therefore advised by us to submit comments as soon as possible.

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.


I am attaching a PDF of the questions tabled by Senator Griff and the Minister's response.

 

[Dx Revision Watch]

Finnish CFS Association

Suomen CFS-yhdistys (Finnish CFS Association) supports the proposal submitted by Suzy Chapman and Mary Dimmock.

Sincerely, Samuli Tani on behalf of Chair Annukka Harjula

Samuli Tani 2017-May-15 - 08:35 UTC

-----------

Now standing at 559 "Agrees" and over 380 Comments.

 

[Dx Revision Watch]

Prof Sir David Goldberg, who is steering the revision of ICD-11 PHC, the abridged primary care version of ICD-11's chapter for Mental or behavioural disorders, appears to be 83!

http://www.checkdirector.co.uk/director/david-goldberg-london/#director_1964083

 

[Dx Revision Watch]

Important update on SNOMED CT International Edition

I no longer post updates or commentary on Phoenix Rising but this is an important development for SNOMED CT that members need to be aware of:

NB. The following have been advised this afternoon: Sonya Chawdhury, Countess of Mar, Jane Colby, Charles Shepherd, 25% ME Group, Invest in ME.

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

I can confirm that "Bodily distress disorder" has been added to the July 2017 release for SNOMED CT International Edition.

The International Edition of SNOMED CT and the various country extensions are all updated twice yearly, on staggered schedules.

The July 2017 Release for SNOMED CT International Edition is now available. It can be accessed here:

http://browser.ihtsdotools.org/

Accept "Terms" and then Select > International Edition


The UK extension was last updated in April, and the next release for the UK extension will be in October/November 2017. The US extension was last updated in March and the next release will be around September.

It is unknown whether BDD (with parent "Functional disorder") will be incorporated into the UK and other country extensions, but the country extensions usually incorporate changes made to the most recent International Edition release within their next scheduled release.

SNOMED CT is being adopted by NHS Primary Care by April 2018. SNOMED CT is currently scheduled for adoption across all NHS secondary care settings by 2020.


"Somatic symptom disorder" (the DSM-5 category) has not been included in this latest release.

The SNOMED CT code for "Bodily distress disorder" is

Parent: Functional disorder (disorder)
SCTID: 386585008

Bodily distress disorder
SCTID: 723916001


SNOMED CT does not include definitions or criteria.

It is therefore unclear whether "BDD" has been included in SNOMED CT according to how it is being defined and characterized for the ICD-11 core version (ie, with a definition and criteria set close to SSD and with SSD as a Synonym, under the Mental, behavioural and neurodevelopmental chapter) or has been included according to how "Bodily distress syndrome" is defined and characterized by Fink et al (2010).

Either way, it's not good news, especially if it is incorporated into the country extensions and with SNOMED CT being adopted in NHS primary care by April 2018.


Screenshot at Thursday, August 3:

Suzy Chapman for Dx Revision Watch

 

[JohnM]

Many thanks for the update Suzy .. as you say, not good news

 

[alex3619]

The listing of the three terms was not viewable in the public version of the Beta draft until late morning on Monday, March 27 because the public beta had not been updated for several days.

A four day response period is a joke, and is a failure of process. There is no excuse. They failed to allow adequate stakeholder commentary. It may even have been unethical.

 

[Dx Revision Watch]

As anticipated, "Bodily distress disorder" has been absorbed into the September 01, 2017 release for the United States edition of SNOMED CT.

The next release of the Netherlands SNOMED CT edition is scheduled for September 30.
The next release of the UK SNOMED CT edition is scheduled for October 01.

 

[Dx Revision Watch]

From the "Details" tab in SNOMED CT Netherlands extension:

https://twitter.com/i/web/status/904777084970696705

 

[Dx Revision Watch]

However, Neurasthenia has been deprecated/retired as a term in the International SNOMED CT Edition and it does not appear in the UK or US editions.

https://twitter.com/i/web/status/904815541126299651

The NL person who spotted this variation in the Netherlands edition has informed a number of Netherlands ME, CFS organizations.

 

[Dx Revision Watch]

May be reposted

Important update on ICD-11 Beta draft proposals

On November 6, a proposal for significant changes to the ICD-11 concept term, Postviral fatigue
syndrome, was submitted to the Beta Proposal Mechanism by Dr Tarun Dua.

Dr Dua is a medical officer working on the Program for Neurological Diseases and Neuroscience,
Management of Mental and Brain Disorders, Department of Mental Health and Substance Abuse, World
Health Organization.

Dr Dua is not a member of the ICD-11 Joint Task Force but served as lead WHO Secretariat for ICD-11's
Topic Advisory Group for Neurology which ceased operations in October 2016.

Note: this proposal uploaded by Dr Dua is still at the “Submitted” stage - ie, it has not been marked as
“Approved” or “Implemented” or “Rejected” nor have any changes to the existing listing for the terms, Postviral fatigue syndrome, Chronic fatigue syndrome, and Benign myalgic encephalomyelitis been inserted directly into the Beta draft, which stands as it did at March 26, when the terms were restored to the draft.

The proposal submitted by Chapman and Dimmock on March 27 remains unprocessed by ICD Revision.

Leaving aside the proposal, per se, the content of the rationale that accompanies it, the misconceptions
contained within it and the narrow range of studies it relies on, there is a great deal that is odd about this
submission.

The language is a mash up of report style and peevish colloquial. The author is evidently unfamiliar with
the nomenclature used in ICD-11 for the terms currently coded under the concept title, Postviral fatigue
syndrome: the proposal refers to “Myalgic encephalitis/Chronic Fatigue Syndrome” and “ME/CFS”
throughout the submission, whereas the terms classified in ICD-10 and ICD-11 are “Benign myalgic
encephalomyelitis” and “Chronic fatigue syndrome”. The author provides no rationale for combining the
terms. The author appears unfamiliar with ICD-11 conventions: ICD-11 does not use acronyms for either
concept title terms or inclusion terms; and ICD does not conjoin ICD terms, as in “ME/CFS”.

The author has omitted to follow ICD Revision guidance for submitting proposals that involve “Complex
Hierarchical Changes”: no proposed hierarchical structure for Chronic fatigue syndrome and Benign
myalgic encephalomyelitis has been set out. Is the author proposing Chronic fatigue syndrome is elevated to concept title term with Benign myalgic encephalomyelitis as the specified inclusion term, or is Benign myalgic encephalomyelitis proposed to be included under synonyms or an index term, only? It’s not clear.

Whilst the proposal is for deletion of Postviral fatigue syndrome from the chapter, Diseases of the nervous system Dr Dua provides no further recommendations for this entity. Does the proposal intend to retire the term? Is Postviral fatigue syndrome intended to be retained under synonyms or as an index term under [a relocated] Chronic fatigue syndrome? Or do the proposers intend to retain Postviral fatigue syndrome but move it to a different chapter location or parent block? No draft Description text has been suggested. There is no discussion of whether consideration had been given to creating a new parent class as an alternative to placing under the “Symptoms, signs or clinical findings of the musculoskeletal system” block.

Given the imminent finalization of the ICD-11 draft, it is a dog’s breakfast of a proposal. Furthermore, it
isn’t clear whose position this proposal represents.

I have asked Dr Dua to clarify whether this proposal represents the position of her WHO department, the
Program for Neurological Diseases and Neuroscience, Management of Mental and Brain Disorders; or
whether it represents the position of ICD Revision or the Joint Task Force. Has Dr Dua or her department
been tasked by ICD Revision to make recommendations or is this proposal unsolicited?

Until clarifications have been provided and until it has been established whether this proposal represents
the official, consensus position of ICD Revision or the Joint Task Force, stakeholders and stakeholder
organizations are not in a position to submit informed responses.

My recommendation would be to wait until we have obtained those clarifications.

This new proposal, posted yesterday by Dr Dua, proposes to Delete Postviral fatigue syndrome from the Diseases of the nervous system chapter and relocate “ME/CFS” [sic] to the Symptoms, signs chapter.

Extract from Dr Dua’s proposal:

“...recommends to remove Myalgic encephalitis [sic]/Chronic Fatigue Syndrome (ME/CFS) [sic] from the
nervous system diseases chapter. The rationale for the proposal is lack of evidence regarding any
neurological etiopathogenesis of chronic fatigue syndrome. We suggest that ME/CFS [sic] be classified in the Signs and Symptoms Block of the ICD-11 as a child of Symptoms, signs or clinical findings of the
musculoskeletal system. The classification in this position according to symptom patterns and severity would be consistent with existing evidence: the syndrome consists of a multitude of symptoms, has an ill defined pathophysiological etiology, and is a diagnosis of exclusion requiring medical evaluation [1]. When there is sufficient evidence and understanding of the pathophysiological mechanisms, diagnosticbiomarkers, and specific treatments, the syndrome can be appropriately classified within the proper block.”


Unless you are registered with the ICD-11 Beta draft for increased interaction with the platform, you
won’t be able to view Dr Dua’s proposal and rationale in the Proposal Mechanism.

For ease of access, I am appending a copy of Dr Dua's full proposal and references. I have submitted some comments to the Proposal Mechanism in which I have requested a number of important clarifications and I have appended these in the PDF.

The full proposal and rationale submitted by Dr Dua is in the attached PDF, below.

The URLs where the PDF resides are:

https://dxrevisionwatch.files.wordp...e-on-icd11-beta-developmenton-november-61.pdf

ie

https://tinyurl.com/y78mpoop

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

Owing to other commitments and a domestic project, I will not be available to discuss this development, but when the clarifications I have requested have been obtained, I will update this thread, which was created specifically for ICD-11 development.

Suzy Chapman for Dx Revision Watch

 

[Countrygirl]

Thank you @Dx Revision Watch .

Dr Dua, in a nutshell, is very ill-informed. She can't even recall the correct name, for goodness sake. What arrogance to consider she has the right to make any proposals for a disease she clearly knows nothing about!

Thank you for all your work for the community. You are very much appreciated.

 

[Dx Revision Watch]

Thank you @Dx Revision Watch .

Dr Dua, in a nutshell, is very ill-informed. She can't even recall the correct name, for goodness sake. What arrogance to consider she has the right to make any proposals for a disease she clearly knows nothing about!

Thank you for all your work for the community. You are very much appreciated.

Thank you Countrygirl. It is difficult believe that Dr Dua or her WHO department had been tasked by ICD Revision to make recommendations now that the Topic Advisory Group for Neurology (TAG Neurology) no longer operates and went on to deliver such a shoddily crafted proposal or that ICD Revision had approved it for submission.

A round up of the clarifications I have requested:

Has this proposal been submitted:

a) By Dr Dua, in a personal capacity?
b) By Dr Dua, on behalf of the Program for Neurological Diseases and Neuroscience, Management of
Mental and Brain Disorders, Department of Mental Health and Substance Abuse, World Health
Organization?
c) By Dr Dua, on behalf of ICD Revision or on behalf of the Joint Task Force or on behalf of the MSAC?

1 Will ICD Revision please clarify the proposed hierarchical structure between the terms “Chronic fatigue
syndrome”, “(Benign) myalgic encephalomyelitis” and “Postviral fatigue syndrome” under proposed new
parent “Symptoms, signs or clinical findings of the musculoskeletal system”.

If ICD Revision does not propose to also relocate “Postviral fatigue syndrome” under the “Symptoms,
signs” chapter, what are its intentions for this term?

2 Will ICD Revision please clarify whether Dr Dua's proposal of 6 November 2017 is under consideration
for potential inclusion in the version of ICD-11 MMS that is scheduled for finalization at the end of this
year for release in June 2018, or whether Dr Dua's proposal will be carried forward for consideration for
inclusion in the first update and revision of ICD-11 MMS, in 2019?

3 Will ICD Revision please clarify whether the proposal submitted by Chapman and Dimmock will be
processed (with Rationales for decisions made), prior to the finalization of ICD-11?

From March 2017 (but still unanswered):

A December 2014 proposal that Exclusions for “Chronic fatigue syndrome” and “(Benign) myalgic
encephalomyelitis” should be inserted under Title concept category “Fatigue” in the “Symptoms, signs”
chapter was approved on 26 March 2017.

What was the rationale for inserting exclusions for “Postviral fatigue syndrome's” two current inclusion terms under "Fatigue", but not for “Postviral fatigue syndrome”, per se, which is currently listed in the Beta draft as the ICD concept title?

I am in close contact with the Countess of Mar in relation to this development.

 

[Dx Revision Watch]

Having said that, I've got emails on file from Dr Robert Jakob, where he has used "chronic fatigue" where he should have used "Postviral fatigue syndrome and its inclusions, Chronic fatigue syndrome and Benign myalgic encephalomyelitis."

Also, responses from WHO to parliamentary questions that have also used "chronic fatigue" as shorthand for the G93.3 ICD-10 legacy terms - a term that does not exist in ICD-10 nor in ICD-11. Compare this with the precisely worded statements of clarification that WHO classification experts like Dr Saraceno and Andre l’Hours used to issue.