Embracing Change – ME and the International Classification of Diseases

February 24, 2014

The WHO ICD featured recently in an online article (since withdrawn), which heightened patient concern over what might happen when the current ICD-10 is finally revised. N.A.Wright provides a timely summary of this international classification system, considers some of the issues surrounding the existing and proposed listing, and calls on our advocacy organisations to get involved…

World Health OrganizationThe World Health Organization (WHO) is responsible for producing an International Classification of Diseases – the ICD.

An important document in standardising epidemiological data, the ICD has often been a source of confusion in discussions about ME/CFS.

The ICD is subject to continuous review with updates published annually and major revisions are intended to be produced every ten years. The date for publication of the ongoing full revision has recently been announced as 2017, providing a three year extension to the formal revision process that began in 2007.

Understanding what the ICD is, what its limitations are and how best to engage with the revision process should be a significant focus for ME/CFS advocacy.

The ICD through an ME/CFS Lens

Many ME/CFS patients first gained awareness of the World Health Organization International Classification of Diseases in the various online discussions that surrounded the UK PACE trial and the arguments made against PACE and its associated projects.

As part of the challenge to the PACE research a patient advocacy position was advanced which relied on the classification of ME as a neurological condition under the World Health Organization’s “International Classification of Diseases” (ICD).

This advocacy position can be summed up as, “ME is neurological because the World Health Organization says so”. Unfortunately, it is a position that is poorly founded because the ICD simply does not confer the authority that is implied.

Equally unfortunate is that the WHO itself perhaps overstates its own case by claiming on its website that, “The International Classification of Diseases (ICD) is the standard diagnostic tool for epidemiology, health management and clinical purposes.”

The ICD has very limited clinical application or diagnostic power, and with the exception of Mental Health (see ‘Limitations of the ICD’ below), has no significant diagnostic role in the health delivery systems of most developed countries.

A far more accurate statement of what the ICD is and what it can be used for, is to be found on the NHS Connecting for Health website:

“ICD-10 is a statistical tool that requires adherence to and application of specified definitions and rules to enable accurate, consistent and comprehensive capture of data for secondary purposes which is undertaken by health informatics professionals – clinical coders.”

A Brief History of International Disease Classification

International disease classification began a century before the United Nations (UN) and WHO came into existence. Building on the work of the British Registrar General from 1837, the first international listings of causes of mortality were accepted by the International Statistical Congress in 1855 and it is from this that the ICD revision numbers commence, the current publication is ICD-10.

By 1900 mortality statistics were augmented with a classification of morbidity by disease and further revisions saw, with the inception of the UN, the adoption by WHO of ICD-6, in 1946. Subsequent revisions were envisaged to take place every 10 years, although slippage at various stages leaves the current published revision at ICD-10 .

ICD-10 is currently under revision and will be replaced by ICD-11, which is scheduled for World Health Assembly approval in May 2017.

The term Benign Myalgic Encephalomyelitis was first included in ICD-8 which was published in 1969 where it was categorised under the heading “Disorders of the Nervous System” with the coding number G93.3. This classification was repeated in ICD-9 (published in 1975) and in ICD-10 (published in 1992).

The replacement for ICD-10 is long overdue and it must be expected that after more than 20 years, as part of the general updating process, some reconsideration of the classification of ME may take place.

Limitations of the ICD

Although vastly more sophisticated than envisaged by the pioneers of international disease statistics, the ICD is still primarily only a system of categorisation which to date has not been a reference of internationally agreed diagnostic criteria.

ICD-10 Blue BookThis may to some extent change with ICD-11 where the inclusion of diagnostic criteria may appear as part of the disease descriptors. There is one part of the ICD which has long standing acceptance as having diagnostic authority, that is Chapter 5: Mental and Behavioural Disorders, which is published in two separate editions, the Blue Book: Clinical Descriptions and Diagnostic Guidelines and the Green Book:  Diagnostic Criteria for Research.

The ICD can be compared to the Dewy Decimal System (DDS) which is used throughout the world to give structure to libraries. Just because a book is allocated a given DDS number does not mean that the book lacks characteristics which may see it placed in another category, or that at some future date the category to which that particular book may have been assigned, may have its description changed or be further subdivided.

The book will not change but its system number and place on the shelf might.

The direct comparison between the ICD and the DDS is limited because diseases are not single edition books; research and developments in treatment mean that ‘diseases’ are subject to constant updates and even to full re-writes as well as the production of multiple volumes which may cross categories.

So, unlike a library, not only are the categories within the ICD subject to change, but so also is the material that is contained within the categories. This is why in addition to annual internal updating via the WHO-FIC Committees, there is a notional ten year process of open review; it is understood that for the ICD to remain relevant it must be constantly globally updated.

The fact that ICD-11 is already 12 years late is no doubt evidence of the huge task that this updating represents in the face of unprecedented world wide investment in health research.

In summary, what this means for ME/CFS advocacy is that categorisation within the system has not conferred diagnostic authority and the location of a disease in a particular category only defined what was seen as useful from the perspective of gathering data, at a particular time.

ICD categorisation will always be subject to change, using the ICD as though it were a fixed and authoritatively determined diagnostic statement, rather than a serviceable means of data recording, may not be advisable from an advocacy perspective.

ICD Clinical Modifications

International Classification of Diseases-Clinical Modifications (ICD-CM), are nationally specific adaptations of the ICD categorisation system which may include diagnostic and clinical detail, such that an ICD-CM can be used as a diagnostic and clinical reference within a specific nation’s health provision. ICD-CMs should not be confused with the ICD.

At least 12 countries including the US, Canada, Australia and Germany, employ ICD Clinical Modifications, which serve a variety of purposes in different countries. The US, for example, has a sophisticated process overseen by the Centers for Medicare and Medicaid Services.

Clinical Modifications, although based strictly upon the ICD categorisation, unlike the ICD itself, do have direct clinical relevance for health provision in each relevant country. Though it is important to be clear that updates to the ICD, may not feed directly into the national ICD-CMs.

Each national ICD-CM is subject to national review which may substantially lag behind changes to the ICD. The US in particular trails behind much of the rest of the world by still using a Clinical Modification based on ICD-9, a version long since retired by WHO. ICD-9-CM does have an annual process for updates, but the US doesn’t plan to shift from ICD-9-CM to ICD-10-CM until late 2014.

International Classification of Diseases 11th Revision

WHO ICD-11 BetaThe International Classification of Diseases (ICD) 11th Revision  is a currently active process, and it is this process that will produce the documents which will be collectively known, once approved by the World Health Assembly, as ICD-11.

According to the WHO:

“ICD-11, is now being prepared. The development phase will continue for three years and ICD-11 will be finalized in 2017. For the first time, through advances in information technology, public health users, stakeholders and others interested can provide input to the beta version of ICD-11 using an online revision process. Peer-reviewed comments and input will be added through the revision period. When finalized, ICD-11 will be ready to use with electronic health records and information systems. WHO encourages broad participation in the 11th revision so that the final classification meets the needs of health information users and is more comprehensive.”

Participation is additionally invited and public health users, clinicians, researchers and other stakeholders can register to provide input into the drafting process and to assist in support activities, such as participation in field tests and translations.

Access and the registration portal is here: ICD-11 Beta Draft (or click the image above).

While open to individuals, achieving effective influence will almost certainly need the force of established organisations supported by acknowledged medical expertise. Co-ordinated action by a coalition of such organisations would be the ideal.

ME/CFS and ICD-11

Because they affect diagnosis and treatment provision directly, the various national ICD Clinical Modifications have the most immediate impact upon patients. Nevertheless the positioning of ME/CFS within the ICD system as a whole is important because such an international reference can influence the context in which the illness is considered in terms of research and health service resource allocations, across the globe.

Changes to the structure and chapter organisation between ICD-10 and ICD-11 will mean that many ICD terms will be presented differently. A new code numbering system applies across the entire classification, so the current coding position of G93.3 for Benign Myalgic Encephalomyelitis, is likely to change, though categories with ICD-10 equivalent terms will be cross referenced to the current ICD-10 codes. Some parent class terms are being retired and there are also proposals for changes to category hierarchies.

In early 2013 the proposal displaying in the Beta drafting platform was to make CFS the ICD Title code, with Benign Myalgic Encephalomyelitis specified as the Inclusion Term to CFS; and PVFS listed under Synonyms to CFS. There will be significantly more textual content across all chapters of ICD-11 and all ICD Title codes will be allocated Definitions and selected other “Content Model” descriptors.

Patient advocacy groups need to monitor these developments and to seek to influence, not just the working proposals on chapter location and hierarchy, but to also ensure that proposals for definitions and other textual content reflect the long term interests of patients.

Dx Revision Watch makes the following interesting observation:

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

It would certainly be a pragmatic approach to have ME/CFS under multiple listings. While epidemiological data collection would be somewhat complicated, multiple listings would allow the accommodation of future nomenclature changes relative to developments in research and treatment.

Future Work

Through her website, Dx Revision Watch, Suzy Chapman has been monitoring and reporting on the progress of the revision to PVFS (Post Viral Fatigue Syndrome), BME (Benign Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome) for ICD-11 for the last five years. Suzy has also monitored and reported on the revision of the ICD-10 and DSM (Diagnostic and Statistical Manual of Mental Disorders) Somatoform disorders.

However, Suzy has recently announced that for personal and political reasons she is stepping back from the work she does via her site. She does not anticipate publishing and circulating new content, although there will be some updates to existing reports.

The WHO is an international body: our reliance on a single volunteer in a single country to monitor and report on the ICD process for the global ME/CFS patient and professional population, has been neither fair, nor reasonable.

Suzy Chapman’s stepping back should be seen as a wake-up call to patient and advocacy organisations to get involved.

ICD-11 need not be seen as inherently a threat to the interests of ME/CFS patients; however to make the most of the opportunities that the ICD-11 process offers, patient organisations must become active participants in the development of the ICD-11 draft over the next three years.

The first objective of that participation should be to ensure that the lack of transparency that currently affects the ICD-11 position on ME/CFS, (and to which patients have been alerted by Dx Revision Watch, see: A Beta draft black hole), is urgently resolved.

*note ME/CFS is used in this article as a generic term, it doesn’t imply any diagnostic preference.

**The author thanks Suzy Chapman for helpful comments and suggestions in relation to the ICD-11 revision process. All views expressed are the author’s own.

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17 comments

{ 17 comments… read them below or add one }

Dreambirdie February 24, 2014 at 11:45 am

Thank you Suzy for all the great work you have done on this issue. Sorry to see you stepping down, but totally understand your need to do so.

Firestormm February 24, 2014 at 4:09 pm

Interesting comment from our Facebook page:

Rene Whitehurst

Since the US is still using ICD-9-CM it would seem to me that it will be years or decade(s) before we catch up to the upcoming ICD-11. I realize action needs to be taken now for the future, but it doesn't appear to me this will affect insurance payments/coverage for quite a while. I just don't want people worrying about being covered now.

When I was going to school for medical coding, they were gearing us up for the big ICD-10-CM update. That was over 3 years ago and it still has not happened. You can't imagine the cost to a medical establishment that one of these updates causes. With the sorry state of healthcare costs in this country, add to that the cost of new computer programs (in many cases whole new computer systems) and the retraining of current coders, I don't know how this is going to go well.

Dx Revision Watch February 25, 2014 at 4:13 am

ICD-10-CM is scheduled for mandatory implementation, this year, on October 1, 2014.

Let's assume that ICD-11 is finalized by 2017.

In January 2009, CMS had said:

"…However, work cannot begin on developing the necessary U.S. clinical modification to the ICD–11 diagnosis codes or the ICD–11 companion procedure codes until ICD–11 is officially released. Development and testing of a clinical modification to ICD–11 to make it usable in the United States will take an estimated additional 5 to 6 years. We estimated that the earliest projected date to begin rulemaking for implementation of a U.S. clinical modification of ICD–11 would be the year 2020…"

That projection dates from when ICD-11 had been planned to be ready for 2014/15. WHA approval has now been shifted to 2017, so the U.S. could be looking at maybe 2024+ for a CM of ICD-11.

(Canada and Australia, both currently using CM's of ICD-10, are anticipated to transition to a CM of ICD-11 more rapidly than the U.S.)

However, Christopher Chute of Mayo, who chairs the ICD-11 Revision Steering Group, has said that ICD-10-CM could potentially be updated gradually (presumably via the annual NCHS/CMS update and revision process) to facilitate a smoother transition from ICD-10-CM to a CM of ICD-11.

Without wishing to veer this thread off topic, here is a good example of how ICD-10-CM might potentially be brought gradually in line with ICD-11:

At the September 18-19 ICD-9-CM Coordination and Maintenance Committee meeting, NCHS/CMS proposed to
insert DSM-5's Somatic symptom disorder into ICD-10-CM, as an inclusion term to existing code F45.1 Undifferentiated somatoform disorder (but note, not proposed to be given a unique disorder code).

In DSM-5, F45.1 is already designated the ICD-10-CM code to which SSD will be cross-walked and APA has worked closely with CMS on the cross-walk codes between the two systems.

CDC's Donna Pickett, who introduced the proposals set out on Page 45 of the Diagnosis Agenda said:

[Unofficial transcription from videocast]

“…And just to complete the package, there are other Tabular List proposals that appear on Page 45 and 46 that we would also invite your comments on. And again, with some of the terminology changes that Dr Regier has described the intent here is to make sure that if those terms are being used, that they do have a home somewhere within ICD-10-CM to facilitate people looking these up. So we invite comments. We’re showing the Tabular List proposed changes; however, there obviously would be associated Alphabetic Index changes with that which we didn’t show just to keep the package a little bit smaller.”

This is the proposal (Page 45, Diagnosis Agenda):

[​IMG]

Image taken from Dx Revision Watch post:

Keep SSD out of ICD-10-CM – November 15 deadline for objections

If CMS does approve this proposal and SSD is inserted as an inclusion term to the existing ICD-10-CM F45.1 code this may leverage the potential future replacement of several existing ICD-10-CM F45.x Somatoform disorders categories with an SSD-like construct, to more closely mirror DSM-5.

Inserting SSD as an inclusion term into ICD-10-CM may also make it easier for ICD-11 to justify a proposal for a Bodily distress disorder that would subsume several existing ICD-10 Somatoform disorders categories.

Though the proposal for BDD may not mirror SSD exactly, it does incorporate SSD characteristics and would thereby facilitate harmonization between ICD-11 and DSM-5 disorder terminology.

So the proposal to insert SSD into ICD-10-CM (which may already be a done deal with CMS) could potentially result in a gradual transition from the existing ICD-10-CM Somatoform disorders framework to a framework that more closely aligns with proposals for ICD-11, or with whatever construct ICD-11 eventually adopts for this section of Chapter 5.

I strongly advise U.S. advocates and clinicians to keep a very close eye on all future NCHS/CMS C & M Committee meetings and the Diagnosis Agendas, to monitor and respond to any proposals for updates and revisions to the ICD-10-CM that might have implications for patients or which might pave the way for transition of ICD-10-CM disorders to proposals for ICD-11.

The C & M Committee meeting page is here and the full Agendas are published a couple of weeks or so before each meeting takes place, in March and September:

http://www.cdc.gov/nchs/icd/icd9cm_maintenance.htm

Dx Revision Watch February 25, 2014 at 4:20 am
Dreambirdie

Thank you Suzy for all the great work you have done on this issue. Sorry to see you stepping down, but totally understand your need to do so.

Thank you, Dreambirdie, I shall continue to add limited updates to my site on key issues relating to ICD-11, ICD-10-CM and DSM-5, but will otherwise be stepping back.

Dx Revision Watch February 25, 2014 at 7:47 am

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

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

Today, Annette Brooke was scheduled to raise an Oral Question in the House of Commons:

http://www.publications.parliament.uk/pa/cm201314/cmagenda/ob140225.htm

Business Today: Chamber for Tuesday 25 February 2014

QUESTIONS
Oral Questions to the Secretary of State for Health

11 Annette Brooke (Mid Dorset and North Poole)

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

Dx Revision Watch February 25, 2014 at 9:20 am

http://www.parliament.uk/business/p…ommons/todays-commons-debates/read/unknown/7/

Answer to Oral Question

ME/CFS
11.

Annette Brooke (Mid Dorset and North Poole) (LD):
What reports he has received on the possible reclassification of ME/CFS by the World Health Organisation.[902634]

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

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

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

Dx Revision Watch February 25, 2014 at 9:41 am

To the best of my knowledge, WHO has issued no recent public statement in relation to ICD-11 other than the Twitter response to a member of the public, on February 12, in which it was stated:

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

Do our Under-Secretaries of State rely on Twitter to inform their responses or does the Parliamentary Under-Secretary have an additional source on which she relies?

Dx Revision Watch February 26, 2014 at 4:06 pm

Well, this is interesting.

Yesterday I had some exchanges with Annette Brooke MP, Chair of the APPG on ME, who is also my MP.

Annette was unable to clarify the source for the public statement on which Jane Ellison MP, Parliamentary Under-Secretary of State for Health, had relied for her Oral Question response.

I have emailed Ms Ellison and requested clarification for her source.

I have also submitted a request via the Department of Health office that deals with requests for information relating to Ministers and government departments, for the source of WHO's "statement". This is a formal process and replies are provided within 18 working days by a civil servant on behalf of the Minister concerned. Since I am not a constituent of Ms Ellison's ward, she is not obliged to provide me with a response.

This evening, the three posts on WHO's Twitter site, which were posted on February 12th, in reply to a member of the public, are no longer displaying and would appear to have been expunged.

Possibly WHO has now decided to issue a formal statement of clarification.

Suzy

Snow Leopard February 26, 2014 at 11:29 pm

Thanks for all the work you have done so far Suzy.

It its important that the WHO clarify their intentions towards the classification of ME/CFS and I hope they do so soon.

Dx Revision Watch February 27, 2014 at 2:03 am

The WHO's replies are displaying for me this morning, but I have needed to select "All" for them to display, and there were in fact more responses on that date than the three that were originally displaying for me.

Anne March 5, 2014 at 11:07 am

Suzy, thank you so much for all you have done! Incredibly appreciated.

I really hope, like the author of this blog post, that our ME/CFS organisations pick up the thread.

Firestormm March 5, 2014 at 12:40 pm
Anne

Suzy, thank you so much for all you have done! Incredibly appreciated.

I really hope, like the author of this blog post, that our ME/CFS organisations pick up the thread.

I agree. I just worry that they might be put off thinking this is a complex area. I think we need a forum where representatives can 'sit around a table' and learn what is happening, and then formulate a plan to move forward. At present there seems to be a lot to read and try to understand and it is all still in a state of flux.

Personally, I think Suzy should be invited to brief our representatives as she seems to be the only one who knows what is happening and has the expertise. I think our representatives generally are behind the curve on this one and need to catch up.

Ha! Sorry Suzy for volunteering you. But it really exemplifies the problem – when we have only one true expert who understand ME/CFS and the ICD etc.

Quite a sad situation and I think you have been bearing the load on your shoulders for too long. But I also hope you can pass the ball now to others who will run with it :)

Firestormm March 18, 2014 at 7:18 am

[​IMG]
Open letter to WHO over classification

18 March, 2014

Action for M.E. Chief Executive Sonya Chowdhury has written an open letter to Dr Ra’ad Shakir, Chair of the World Health Organisation neurology topic advisory group, regarding concerns over the classification of M.E./CFS in the WHO ICD-11.

There has been concern within the M.E. community that the three ICD-10 G93.3 terms, PVFS (Postviral Fatigue Syndrome), BME (Benign Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome) have been missing from the public version of ICD-11 Beta draft since early 2013.

The letter which has been produced collectively, is also signed by Annette Brooke MP, Chair of the All Party Parliamentary Group on M.E., the Countess of Mar, Chair of the House of Lords-led group Forward ME, and Dr Charles Shepherd, Medical Adviser of the ME Association who, like Sonya, is a member of the APPG secretariat.

You can read the letter in full.

@N.A.Wright and @Dx Revision Watch Looks like some positive momentum has been generated. Though I have yet to read the rather comprehensive looking letter :)

Dx Revision Watch March 18, 2014 at 2:13 pm
Firestormm

Personally, I think Suzy should be invited to brief our representatives as she seems to be the only one who knows what is happening and has the expertise. I think our representatives generally are behind the curve on this one and need to catch up.

In the interests of transparency, I acted in an advisory capacity during the preparation of this joint letter initiative to WHO/ICD, advising on existing ICD-10 coding, proposals for the G93.3 terms for ICD-11 as they had stood in January 2013, and around Beta drafting platform technicalities.

Since early 2009, when I first started monitoring and reporting on the ICD-11 Revision process, selected UK patient orgs have been kept informed of significant developments directly and via Co-Cure Listserv. So it's not as though this is all new stuff to them. I also keep some international ME, CFS and FM orgs and clinicians informed, directly, of significant developments.

I have the full text of the joint letter on my site in this post: http://wp.me/pKrrB-3Pp

On February 26, I submitted a formal enquiry to the office for Ministerial Correspondence and Public Enquiries, Department of Health. I asked:

The Parliamentary Under-Secretary of State for Health (Jane Ellison) Oral Response included the statement:

“No discussions have taken place between the Department and the WHO on the reclassification of ME/CFS, but the WHO has publicly stated that there is no proposal to reclassify ME/CFS in ICD-11.”

I should be grateful if you could clarify the source for the WHO public statement which informed Ms Ellison’s response to Annette Brooke.

On March 17, I received a response, a copy of which can be read on my site in this post:
http://wp.me/pKrrB-3Pa

which reveals that Gregory Härtl, Head of Public Relations/Social Media at WHO, also provided a response to a member of the public via Twitter.

And in this new post, below, I set out what can and what cannot safely be determined from the Beta draft and associated literature:

Proposals and evidence for the ICD-11 classification of Bodily Distress Disorders: WHO ICD-11 Symposium IV, WPA XVI World Congress, Madrid:

http://wp.me/pKrrB-3Oe

Suzy

Dx Revision Watch March 18, 2014 at 3:37 pm
Firestormm

I agree. I just worry that they might be put off thinking this is a complex area. I think we need a forum where representatives can 'sit around a table' and learn what is happening, and then formulate a plan to move forward. At present there seems to be a lot to read and try to understand and it is all still in a state of flux.

@ Firestormm

It is a very complex area and it's not enough to just monitor the public version of the Beta platform and draw hasty conclusions from what little displays in the public version, because the Beta doesn't display sufficient information, and this is leading some people to jump to ill-informed conclusions and misreporting.

It doesn't help that there are no working group progress reports being published and no periodic static drafts are issued for public review and commenting, like there were for DSM-5, where there were three static draft review periods. So information has to be gleaned from other sources, like journal papers, conference presentations, contributions to book chapters etc.

As you say, the draft is fluid and I sometimes find that shortly after I have published an update on a change to the draft, it needs to be updated with further changes.

This ongoing revision and drafting process is being fed into by the ICD Topic Advisory groups (TAGs), external reviewers and sub working groups for specific categories, the Primary Care Consultation Group, professional bodies (some of whom have been specifically invited to input proposals), institutions, WHO Collaborating Centres, clinicians, researchers and organizations – so a lot of people involved.

Some new proposals will be subject to field testing over the next year or two and not all new concepts are expected to survive the field trials.

Goldberg's Primary Care Consultation Group's Bodily stress syndrome (BSS) construct was put out for international focus group review in 2011 and is reported on in paper [1] which tells us a good deal about the emergent BSS construct, as proposed in 2012.

But it's not Goldberg's BSS that has been entered into the Beta draft – it's Gureje and Creed's BDD term and Definition.

One needs to familiarise oneself with both of the two journal papers that were published in 2012 by the two groups that are advising ICD Revision on the revision of ICD-10's Somatoform disorders, in order to get a handle on the two constructs, as they were being put forward in 2012, and how they differ. But the Gureje, Creed 2012 paper is behind a paywall, though I do have a copy, myself.

You cannot determine very much at all from the Beta, in isolation. It tells us little about what the current proposed construct for BDD is, especially now that Somatization disorder and Neurasthenia have recently been put back into the draft.

But folk won't grasp the significance of their reintroduction if they are not also aware that in 2012, both groups were recommending constructs for ICD-11 that subsumed all the categories between F45.1 – F45.9 plus F48.0 Neurasthenia, replacing them with a single, new disorder category of BSS (in the case of the Primary Care group) and BDD (in the case of the S3DWG group). But now we see two previously eliminated categories restored to the draft, so the overall construct or framework must have undergone a further revision recently – but the Beta isn't explicit as it doesn't include expanded disorder descriptions at this stage.

So the revision of the Somatoform disorders section (which also extends to how Hypochondriasis/Illness anxiety is dealt with in ICD-11, and the potential harmonization with SSD and its implications for the so-called FSSs issue) is not a topic that lends itself to being boiled down into a few posts on Twitter or to brief articles in non specialist publications.

The Beta is revised on a daily basis and I need to monitor on a daily basis for changes. There are no tracking histories like some wikis have, so you cannot readily compare earlier versions.

In the version of the drafting platform that ICD-11 Revision working groups are using (which we can't see), all changes are documented with "Change history" discussion notes, but all we see, in the public version, is the change, not the rationale for the change, or the earlier versions.

It isn't evident to the public how it is now envisaged that Somatization disorder and Neurasthenia would fit into whatever framework is currently being proposed. There is no other public domain source that sets this out, so one cannot comment meaningfully on this development as the framework isn't explicit and since ICD Revision work group chairs won't engage. So one of the big problems with discussing proposals is that information is incomplete.

One might argue that there has perhaps been a recent consideration for a construct that doesn’t veer too far away from the ICD-10 status quo, which could be crafted to accommodate selected of the ICD-10 legacy Somatoform disorders categories and Neurasthenia, rather than BSS or BDD, as they stood in 2012, but which removes the ICD-10 Somatoform disorder requirement for symptoms to be “medically unexplained” in order that SSD might be shoehorned into an ICD-11 framework for “harmonization” with DSM-5.

But we simply don't know.

And that current Definition doesn't tell us enough about what patient populations the current construct would be inclusive of, or what the exclusions would be (the current exclusions are unedited legacy text from ICD-10 so cannot be assumed to relate to new proposals).

Which is something else that people don't always realise – that much of the text in the Beta is still waiting to be revised from ICD-10 to reflect new disorder constructs or to reflect new medical research and revised classifications. The Beta didn't start out as a tabular rasa – it started off by importing ICD-10 and ICD-10 texts, plus some new medical and psych categories, which was called, collectively the "Start up list". Then they started rearranging chapters and hierarchies and adding definitions, retiring some categories etc. As they are so far behind targets, there is still a lot of text that remains to be revised or added.

We don't know whether the two groups have reached consensus over a new disorder name and construct.

We don't know whether and to what extent the groups’ two (divergent) constructs have been revised since publication of their respective 2012 papers. But evidently BDD has undergone revision from 2012 since two legacy categories have now been restored to the draft.

I see folk trying to write about BDD and it's clear that they don't know what the criteria are for Fink's BDS or what the criteria are for DSM-5's SSD and they aren't aware that in 2012, the BDD construct was, in fact, a pretty close fit for an SSD construct – not for Fink's BDS.

But they don't perceive the nuances.

They aren't aware that SSD and BDS are divergent constructs; that the first is based on psychological and behavioural characteristics and the second on symptom clusters from various body systems with no requirement for psychobehavioural responses to meet the criteria. But there are other conceptual differences between the two, and they potentially capture different patient populations.

They aren't aware that BDD in 2012, was based on psychological and behavioural characteristics but it was Goldberg's BSS that was based on Fink like symptom clusters from various body systems, with a nod towards SSD-like psychological and behavioural characteristics. So in 2012, BSS was a hybrid between SSD and BDS, but BDD had much in common with SSD.

They read the BDD Definition that has been recently inserted into the Beta and they equate it with Fink's BDS because the term sounds similar and because it mentions certain types of bodily symptoms (but these also featured in the old Somatoform disorders – but they aren't familiar with the symptom lists from the old Somatoform disorder criteria, either, so they see "fatigue" and "pain" and "musculoskeletal" and assume BDS).

But the BDD Definition text is drawn from the 2012 BDD paper, which had described an SSD-like model – but they aren't familiar with the BDD paper.

You cannot argue effectively against what you don't understand.

And the Beta is a mess and littered with anomalies and discrepancies which does not help. For example, there is a reference in the legacy text for Somatization disorder to F45.1 Undifferentiated somatoform disorder.

But there is no F45.1 Undifferentiated somatoform disorder in the ICD-11 Beta draft.

http://apps.who.int/classifications/icd11/browse/f/en#/http://id.who.int/icd/entity/967191413

"…Short-lived (less than two years) and less striking symptom patterns should be classified under undifferentiated somatoform disorder (F45.1)."

I have queried this; no response or correction. They've evidently dropped back in the old text from ICD-11 without bothering to edit out F45.1, which does not appear in ICD-11. But some folk won't realise this. So what you see in the draft comes with caveats: incomplete, unapproved, not yet revised, subject to field test evaluation, may contain errors and omissions etc.

Re orgs:

A few years back, when Chris Clark was still with AfME, there had been an ME Alliance of the main UK patient orgs that would prepare joint letters around areas of shared concern. That fizzled out.

But we do have two groups where these matters can be discussed: the APPG on M.E. (whose Chair, Annette Brooke MP, has co-signed the letter, as you know) and the Countess of Mar's private group, Forward ME: membership here: http://www.forward-me.org.uk/LinkedOrganisations.htm

As regards AfME, MEA and TYMES Trust – they know that I am stepping back from much of the work that I do but that I will be prepared to continue to provide any additional information on ICD-11 they may require or provide clarifications or updates on latest developments, if approached to do so.

But I have already suggested to AfME, TYMES Trust and MEA that a UK or international task force of orgs needs to be convened to address all ICD-11 related concerns. Yes, we need to obtain full clarifications and I am very pleased that a joint letter has gone in, but it does not end there.

Note that I will not be advancing any position on either Chapter 06 or the G93.3 terms – only providing information and clarifications on what is known about what is being proposed, if approached.

Unfortunately, with respect to BDD, at least, proposals are quite likely to remain in a state of flux for a couple of years yet, until field tests have been carried out and evaluated.

It's not known whether the field test protocols will be made publicly available. But without full disorder descriptions, criteria, inclusions, exclusions, differential diagnoses etc, there is currently insufficient content in the Beta drafting platform to determine the precise nature of whatever construct and criteria is currently favoured by ICD-11 Revision Steering Group for a proposed replacement for all or some of ICD-10's Somatoform disorders just based on the Definition, alone.

But being based on SSD-like psychobehavioural responses to meet the disorder, with no evident requirement for specific symptom counts, or symptom clusters from various body systems, and can apply in the presence of any symptom – it does not appear to have congruency with Fink's BDS.

But when you have no BDD criteria, inclusions, exclusions set out to compare directly in a table with Fink's BDS, it can be very hard to get people to understand this.

(An SSD-like construct to replace the IC0-10 Somatoform disorders would also be problematic and that potential is being sidelined because of the focus on BDS.)

As far as the three currently absent ICD-10 G93.3 terms are concerned, it is to be hoped that Dr Margaret Chan will wish WHO/ICD Revision Steering Group to be seen to be accountable and transparent and that answers to the several questions raised in the joint letter (questions which have been raised by me with WHO/ICD Revision since June 2013 and repeatedly stonewalled) will be forthcoming. Even then, proposals will be subject to Revision Steering Group approval and approval of WHO classification experts.

If it were feasible, I would attend the WPA World Congress, in September, in Madrid, where Oye Gureje, who chairs the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders, will be presenting on “Proposals and evidence for the ICD-11 classification of Bodily Distress Disorders” as part of a series of ICD-11 Symposia but it's not feasible for me to do this. If there is an abstract, summary report or other materials published in respect of Dr Gurege's presentation, either before or after the Symposium, I will publish a copy [2].

References

1. Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS: Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Fam Pract Feb 2013 [Epub ahead of print July 2012].

Abstract: http://www.ncbi.nlm.nih.gov/pubmed/22843638
Full free text: http://fampra.oxfordjournals.org/content/30/1/76.long
PDF: http://fampra.oxfordjournals.org/content/30/1/76.full.pdf html

2. World Psychiatric Association’s XVI World Congress of Psychiatry, Madrid, September 14–18, 2014: http://www.wpamadrid2014.com/scientific-information/topics/

Suzy

Firestormm March 19, 2014 at 2:21 am

I am almost tempted to produce a new article that simply publishes the letter in my post above. It's really rather good and hopefully, a reply to the specifics will produce the required clarification. Then we can move forward.

Roy S March 19, 2014 at 6:29 am


It's great to see people working together like this. You have my continuing gratitude, Suzy. :-)
 
http://www.meassociation.org.uk/201…rom-draft-who-reclassification-17-march-2014/
 
Joint letter asks why PVFS, ME and CFS are missing from draft WHO reclassification | 17 March 2014
 
We have co-signed an open letter to the London-based chair of the World Health Organisation Neurology Topic Advisory Group asking why ME, CFS and PVFS have been left out of a draft reclassification of the world’s diseases.

The letter has been signed by Action for ME chief executive Sonya Choudhury, All Party Parliamentary Group chairman Annette Brooke MP, Forward ME Group chair The Countess of Mar and ME Association medical adviser Dr Charles Shepherd.

It says three terms contained in the last International Classification of Diseases (ICD-10) – Post Viral Fatigue Syndrome, Benign Myalgic Encephalomyelitis and Chronic Fatigue Syndrome – "have been missing from the public version of the ICD-!l Beta draft since early 2013″.

The letter calls on neurology topic advisory group chair Dr Ra’ad Shakir, who works for Imperial College NHS Trust in London, to end public speculation about the omissions by saying how these diseases are proposed to be dealt with in the ICD revision, which is due to be published some time in the next three years.
 
 
 
 

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