Update One from Dx Revision Watch January, 2012

Update One from Dx Revision Watch January, 2012

Dx Revision Watch
http://dxrevisionwatch.wordpress.com/

18 January 2012

When is the third and final public review of proposals for DSM-5 expected?

No firm date as yet. The DSM-5 Timeline still has a third and final review listed for January-February, for a two month long stakeholder review and comment period [2].

This information is outdated.

The APA has announced that its field trials are running behind schedule and some trials won’t now be completed until March, this year.

The third and final draft is now expected to be released for public review and comment, “no later than May 2012″, according to DSM-5 Task Force Vice-chair, Darrel Regier, MD [3].

I will update as more information becomes available about the posting of the third and final draft.

DSM-5 proposals with the most relevance for us are the proposals of the “Somatic Symptom Disorders” Work Group for the revision of existing DSM-IV “Somatoform Disorders” categories. The SSD Work Group’s current proposals can be found on the DSM-5 Development website [4].

DSM-5 Reform iPetition for professionals:

An Open Letter and Petition sponsored by an ad hoc committee of the Society for Humanistic Psychology (Division 32 of the American Psychological Association), in alliance with several other American Psychological Association Divisions, has attracted nearly 11,000 signatures with 40 mental health professional bodies and mental health organizations publicly endorsing the Open Letter [5].

The “Coalition for DSM-5 Reform” committee is calling on the American Psychiatric Association to submit its draft proposals for new categories and criteria for DSM-5 to independent scientific review.

Please note that the Society for Humanistic Psychology iPetition is for signing by mental health professionals and allied mental health professionals; it is not intended for signing by patients.

American Psychiatric Publishing serves “cease and desist” letters and threats of legal action against Suzy Chapman:

The site formerly operating under the subdomain dsm5watch.wordpress.com and known as DSM-5 and ICD-11 Watch is now known as Dx Revision Watch Monitoring the development of DSM-5, ICD-11, ICD-10-CM and operating at http://dxrevisionwatch.wordpress.com/

The issuing of legal threats on behalf of the American Psychiatric Association, just before Christmas, has generated considerable interest and outrage amongst blogging mental health professionals [6].

I am collating commentaries from Allen Frances MD, who had chaired the DSM-IV Task Force, Bernard Carroll MD, Margaret Soltan PhD, Dan Carlat MD, Howard Brody MD, PhD, Jack Carney DSW, author Gary Greenberg, Steve Balt MD, Paula J. Caplan PhD, Mindhacks, Daniel Lende, 1 Boring Old Man (Mickey Nardo MD), James Gaulte MD, and advocates in Post #123, on this page of my site: http://wp.me/pKrrB-1Bi

References:

1] DSM-5 Development site

2] DSM-5 Timeline

3] DSM-5 Task Force Ponders Round 2 of Public Feedback, Deborah Brauser for Medscape Medical News, August 31, 2011

4] Somatic Symptom Disorders

Complex Somatic Symptom Disorder (CSSD) criteria

Simple Somatic Symptom Disorder (SSSD) criteria

Key documents:

       Disorders Description

       Rationale/Validity Propositions

5] Coalition for DSM-5 Reform (an ad hoc committee of the Society for Humanistic Psychology, Division 32 of the American Psychological Association) Open Letter and Petition for Professionals: http://dsm5-reform.com/

6] Coverage of APA’s threats of legal action against Suzy Chapman: http://wp.me/pKrrB-1Bi

Suzy Chapman
_____________________

http://dxrevisionwatch.wordpress.com
https://meagenda.wordpress.com
http://www.facebook.com/MEagenda
http://twitter.com/MEagenda

Just three days left before second DSM-5 stakeholder review closes

Just three days left before second DSM-5 stakeholder review closes

Shortlink: http://wp.me/p5foE-3jL

On June 16, the American Psychiatric Association (APA) announced an extension to its second public stakeholder review of draft proposals for categories and criteria for the next edition of the Diagnostic and Statistical Manual of Mental Disorders, which will be known as “DSM-5”.

The closing date for submissions is now Friday, July 15.

There are just three more days left in which to submit letters of concern in response to the potentially damaging proposals being put forward by the Work Group for “Somatic Symptom Disorders” – the DSM-5 committee charged with the revision of existing DSM-IV “Somatoform Disorders” categories. 

If you haven’t already submitted a comment, please do, however brief. You’ll find  information on making submissions in this post: http://tinyurl.com/DSM-5-register-to-comment.

Proposed criteria and two key documents are posted here: http://wp.me/pKrrB-13z.

For examples of letters of concern, copies of this year’s submissions, including the Coalition4ME/CFS’s resource materials and template letter, are collated here on my Dx Revision Watch site:

http://wp.me/PKrrB-19a 

These include letters of concern from international patient organizations, professional stakeholders, patients, patient advocates and professional bodies.

If you have already submitted but have other points to make, please submit a second response. 

If you know an informed professional please alert them today to the implications for patients with ME, CFS, IBS, FM, CI, CS, Gulf War illness and other illnesses that are bundled under the “Functional Somatic Syndromes” and “Medically Unexplained” umbrellas.

If the Work Group’s current proposals are approved, these illnesses will be sitting ducks for an additional “bolt-on” mental health diagnosis of a “Somatic Symptom Disorder”.

If you haven’t yet registered your concerns, please get a letter in before the feedback period closes on July 15!

Second DSM-5 public review of draft criteria

The closing date for comments in the second DSM-5 public review has been extended to July 15.

Register to submit feedback via the DSM-5 Development website here: http://tinyurl.com/Somatic-Symptom-Disorders

Once registered, log in with username and password and go to page: http://tinyurl.com/DSM-5-CSSD

Copies of this year’s submissions are being collated here: http://wp.me/PKrrB-19a  

Text version: Review of Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

Text version of Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk by Chris Douglas

Shortlink to this posting: http://wp.me/p5foE-34M

or http://tinyurl.com/ReviewIiMEProposalText

For the Word file of this document and related information go here:

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

 

TEXT VERSION

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

By Chris Douglas

27 August 2010

Introduction

In August 2010, Invest in ME (IiME) published a document titled: ‘A New Era in ME/CFS Research: An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis’¹.

It is assumed that this document is a precursor to a more formal and detailed proposal that will be used to secure consultative input and financial commitment to the project.

The following review highlights specific areas in which the proposal could be strengthened if, in particular, it is to maximise commitment from potential financial donors.

1. Scope
2. Objectives
3. Service Provision Model
4. Funding
5. Conflicts of Interest

1. Scope

1.1. Geographic Scope

The scope of a proposal has direct bearing on project objectives and methodology and provides a framework within which the project can be assessed.

In the current proposal, it is unclear whether the Centre is aimed at servicing the Norfolk region only or the UK as a whole (which, presumably, would include Scotland and Northern Ireland). For example, there is reference to a “national centre of excellence for ME” whilst also discussing East Anglia as being a ‘region of opportunity’.

In particular, it is unclear whether there is a distinction in national and regional service provision between the separate clinical and research facilities detailed in the proposal (and located in Norfolk and Norwich University Hospitals, and the University of East Anglia/Norwich Research Park respectively).

If the clinical service is intended to be national, the following questions arise.

Why has Norwich been selected as a location (given that it has poor logistical accessibility for the rest of the country)?
Have other geographic locations and facilities been considered?
If so, how has their suitability been assessed and by whom?

Page 2 

For both a national and regional remit, the following questions arise for the clinical service.

Why have Norfolk and Norwich University Hospitals (N&NUH) been selected to host the Centre’s clinical facility?
What specific types and levels of expertise would N&NUH bring to the Centre?
Does N&NUH health care staff have the capabilities and infrastructure to deliver the proposed service and, if not, how would this be addressed?
Have other facilities been considered?
If so, how has their suitability been assessed and by whom?

For a national and/or regional remit, the following questions arise for the research service.

What is the rationale for selecting the University of East Anglia/Norwich Research Park (UEA/NRP) to run the Centre’s research programme?
Has the UEA/NRP submitted a formal proposal for hosting the research programme?
If so, who has assessed this and how has it been assessed?
Have other research facilities been asked to submit proposals?
If so, who has assessed these and how have they been assessed?

The distinction between a national and regional service is further confused by the assumption that the Centre’s ‘translational’ model can be achieved only where the clinical and research services share the same geographic location.

The rationale for this assumption is unclear and, indeed, is contrary to the existing health care provision framework in the UK which operates through a countrywide network of medical facilities within (or co-ordinated by) the National Health Service (NHS).

1.2. Disease Scope

The document uses the nomenclature ‘ME’ (myalgic encephalomyelitis) to describe the condition that it intends to cover although there are further associated illnesses that overlap with ME and, indeed, may actually be the same disease (e.g. fibromyalgia, atypical MS, atypical lupus).

In addition, the UK medical profession uses other terms to describe ME, including Post Viral Fatigue Syndrome (PVFS), Chronic Fatigue Syndrome (CFS) and even just chronic fatigue.

The UK medical profession also lacks clarity and consistency in disease definition and diagnosis, an issue which, as pointed out in the proposal, can lead to patients being diagnosed incorrectly (either as having ME when they do not or not having ME when they do).

To avoid the considerable confusion and inaccuracy of existing nomenclature, definition and diagnosis, it may be preferable to adopt the term ‘neuroimmune disease’, as used by the US Whittemore Peterson Institute (WPI) which the proposal states is a role model for the Centre.

Page 3 

This may also avoid the potential confusion between the Centre of Excellence and existing NHS ME/CFS Centres (referred to in the proposal) which attract criticism for, amongst other things, their lack of biomedical intervention and focus on occupational and behavioural therapies.

In addition, this would provide a platform for further research into the human gammaretrovirus (HGRV) family which has been linked with ME and is the current focus of the WPI. The current proposal does not make reference to this retrovirus and this would seem an oversight given (a) the growing scientific interest in this area and (b) that donors to IiME’s Biomedical Research Fund approved support of the WPI’s UK study of HGRVs. It is also highly relevant for diagnostic purposes (a key focus of the proposal) given the likelihood that HGRVs will become, at very least, a biomarker for ME.

2. Objectives

Successful projects are underpinned by objectives which are specific, quantified, achievable and measurable.

The current proposal omits specific, quantified objectives or project ‘deliverables’, possibly because these are difficult to define given the lack of a precise scope.

Once the scope has been clarified, it may help to establish an overarching mission, a set of objectives and a timeline for implementation.

Given that this is a start-up project with a limited budget (see 4. Funding), it may be prudent to begin with a limited remit that can be met within a short lead-time and then used as a basis from which to develop more ambitious plans.

An example clinical mission would be: ‘To translate international biomedical research findings and therapies into clinical treatments for patients in Norfolk.’

Clinical objectives could include:

– to diagnose and treat x number of patients over time period y
– to deliver xx% improvement in patient health and well-being over time period y
– to train x number of N&NUH doctors in the diagnosis and treatment of ME over time period y

An example research mission would be: ‘To implement research programmes that complement and support those of the WPI.’

Research objectives could include:

– to complete x number of studies (by specified type) over time period y
– to replicate/validate findings of research study z
– to test the efficacy of treatments a, b and c over time period y

The proposal lists eleven project benefits and certain of these could be classed as deliverables (e.g. domiciliary services) but would require greater detail based on a

Page 4

quantified top line objective (e.g. diagnosis and treatment of a specified number of housebound patients pa).

All objectives would require an accompanying plan for delivery and methods of measurement and assessment.

3. Service Provision Model

In the absence of specific and robust objectives to use as a benchmark, it is difficult to assess the potential outcome efficacy of the proposed service model although questions about operational efficiency can be raised at this stage.

The diagram in figure 1 is a graphic representation of the service provision model described in the proposal. The shaded organisations are those which, combined, form the Centre of Excellence.

Fig 1. Overview of assumed service provision model

The proposal describes this as a “simple but effective structure”, although it could be argued that the model is, actually, quite complex given the number of stakeholders and communication pathways that are involved.

Page 5

In addition, four separate organisations and geographic locations constitute the Centre of Excellence itself, which makes it a concept rather than a single entity, and so conflicts with the proposal’s underlying theme of a closely integrated operation.

The responsibilities of each of the organisations within the Centre are unclear from the proposal, as are how they will inter-relate and how communication and control will be managed.

In particular, the proposal requires more detailed explanation of the roles of Norfolk PCT and N&NUH, not only in terms of how they may provide patient services regionally and/or nationally, but also in terms of their potential model for other PCTs and hospital trusts to follow, as well as their operation within the NICE (National Institute for Health and Clinical Excellence) guidelines for treating ME.

The proposal states that “a new commissioning director at Norfolk PCT…is supporting the steering group’s views”. It would be helpful to name the individual in question and also include their input in detail.

The position of a ‘clinical biomedical lead consultant’ is mentioned and also that candidates have been approached for this role, although their remit and responsibilities, selection and measurement criteria, and reporting structure are not explained. Similarly, it is unclear how the ‘GPs with special interest’ who support the lead consultant will be identified, enrolled, trained and funded.

The proposal recognises the critical importance of training health care staff (and also mentions ‘visiting experts’) although it is unclear who will be responsible for training the N&NUH staff, which staff will be trained and how training will be implemented and monitored.

Staff training will be paramount to the Centre’s success, particularly given the NHS’ current dearth of biomedical knowledge about ME and its inappropriate and, sometimes, harmful treatment options for the disease (as per the NICE guidelines, mentioned above). IiME needs to demonstrate that the NHS’ long established and entrenched misunderstanding of ME can be corrected, and swiftly, if the Centre is to gain the confidence of patients and commitment of financial donors.

With specific reference to IiME’s involvement in the project, the proposal would benefit from more detailed explanation of the following.

For each of the three IiME entities (charity, limited company and steering group):

– role
– management structure
– governance
– overlap with the other two entities

For the charity and steering group specifically:

– members and/or trustees (other than the two named in the proposal)
– how members/trustees are appointed
– who appoints members/trustees
– to whom members/trustees are accountable
– how members/trustees are monitored

Page 6

For IiME Ltd specifically:

– when the company was/will be incorporated
– business classification and trading objectives
– share structure and ownership
– board members and responsibilities
– relationship with Norfolk PCT and N&NUH (given that the proposal refers to IiME Ltd supporting service commission by the former from the latter)

In addition, it would be helpful to understand how the Centre’s work might be integrated with that of other ME research organisations such as ME Research UK (currently funding a HGRV study in Sweden), the UK CFS Research Foundation (supporter of Dr Jonathon Kerr’s research for many years), as well as with its stated role model, the US WPI.

4. Funding

The proposal omits a top line funding requirement, a budget break-down and a cost-benefit analysis for the project.

Norwich local newspaper, EDP24, has stated: “Discussions will be going on over the next few months and once a decision has been made, funding will begin to the tune of £150,000 a year.”²

This amount seems low in the context of the proposed service provision model and particularly in comparison to the Center for Molecular Medicine (home of the WPI at the University of Nevada) which cost $77 million to establish.

The proposal states that funding for research would be “organised and provided by the charity and the UEA” although there is no further detail of how this would be supported nor who would fund the clinical element.

As a consequence, the following information remains to be confirmed.

The estimated cost (overall and breakdown) of establishing and maintaining the Centre over a given time period (for example, five years).

The share and source of funding to be provided by each of the organisations involved in the Centre.

How the funds will be raised by each of the contributing organisations.

Methods for monitoring expenditure, measuring outcomes and reporting to fund contributors.

For those funds raised via IiME (the charity), whether donors will contribute to the Centre as a whole or to specific research and/or clinical projects.

For IiME (the charity), the share of funding to be sourced via the following:

– general donations to the charity;
– profits from sale of IiME’s annual conference DVD;

Page 7

– donations to IiME’s Biomedical Research Fund;
– donations to a separate Centre specific fund.

•  Whether, after completion of the WPI’s UK study, any residual monies in IiME’s Biomedical Research Fund will be transferred to the Centre or remain in the Fund for further research projects, and whether donors’ approval will be sought for either course of action (as per the precedent set when monies were reallocated from Dr Kerr’s withdrawn research to the WPI’s UK study).

5. Conflicts of Interest

Fund donors may wish to see further explanation for, and clarification of, the following potential conflicts of interest.

Dr Ian Gibson’s involvement in this project will raise concerns with those who did not welcome his unofficial ‘Gibson Inquiry’ into ME (as referenced in the proposal) and the subsequent uncorrected ‘e-report’ which was published in October 2006³. There were significant criticisms of the way that Dr Gibson and his panel undertook this inquiry (which was a personal project and not a formal Parliamentary Inquiry or Report), such as the involvement of Lord Turnberg, a known supporter of cognitive behavioural therapy (CBT) and graded exercise therapy (GET), and the absence of proper consultation with the inquiry’s constituency of interest at all stages throughout the life of the project. Previously a Labour backbencher, Dr Gibson was barred from standing for the party in the 2010 general election following questions about his ministerial expenses.

Dr Fiona Poland of UEA’s Institute of Health and Social Science Research is working in partnership with Action for ME (AfME) and a network of universities on part of a major ME research project sponsored by the Big Lottery Fund (i.e. reporting and developing early findings on the impact of the illness and available means of support). The association between UEA and AfME will raise concerns with a growing number of patients who openly criticise the latter’s role, agenda and efficacy, particularly in terms of its apparent unwillingness to support biomedical ME research and to challenge the psychosocial paradigm.

The Norwich Research Park is a joint venture between the UEA, and amongst others, the Sainsbury Laboratory which, in turn, is supported by the UEA and the Gatsby Foundation. The Gatsby Foundation is one of a number of Sainsbury Family Charitable Trusts which share the same administrators and counsels. This includes the Linbury and Ashden Trusts which have provided funding for the RNHRD NHS FT, Bath (the ‘Min’) and the University of Bristol’s controversial trial of the Lightning Process on children and for which IiME has stated its public opposition.

The Institute for Food Research (IFR) and The Genome Analysis Centre (TGAC) are institutes of the Biotechnology and Biological Sciences Research Council (BBSRC). The BBSRC grant-aids the John Innes Centre (based in Norwich Research Park) which hosts the Sainsbury Laboratory and the TGAC. BBSRC is one of seven Research Councils that work together as Research Councils UK (RCUK). It is funded from the Government’s Department for Business, Innovation

Page 8

and Skills (BIS). This is a complex organisational structure which makes it difficult to achieve transparency in funding governance and also to identify potential conflicts of interest.

It is unclear from the proposal whether ME support groups in the Norfolk region (or nationally, if the scope is such) are involved in this project and the degree to which they have provided input and support. It is also unclear whether there has been any wide-scale patient consultation for this project or if any is planned in the future.

References

1 Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk August 2010
‘A New Era in ME/CFS Research: An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis’

2 EDP24 “Norwich centre for ME sufferers planned” 03.08.10

3 THE ONE CLICK GROUP REPORT THE GIBSON ‘INQUIRY’ 17 January 2007

 

Chris Douglas is an ME sufferer and ex-corporate project manager.

douglas_chris@hotmail.co.uk

© Chris Douglas 2010

Review of Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk by Chris Douglas

Shortlink to this posting: http://wp.me/p5foE-33z

or http://tinyurl.com/ReviewIiMEProposal

At the 5th Invest in ME International ME/CFS Conference held in May, this year, a proposal was announced for the establishing of a “Centre of Excellence for ME” in Norfolk. To the best of my knowledge, Invest in ME had undertaken no national consultation with ME patients before drawing up its proposals.

Today I am publishing a review of Invest in ME’s proposal prepared by Chris Douglas.

A text version of this review is published in the next post.

 

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

By Chris Douglas

27 August 2010

Introduction

In August 2010, Invest in ME (IiME) published a document titled: ‘A New Era in ME/CFS Research: An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis’¹.

It is assumed that this document is a precursor to a more formal and detailed proposal that will be used to secure consultative input and financial commitment to the project.

The following review highlights specific areas in which the proposal could be strengthened if, in particular, it is to maximise commitment from potential financial donors.

Review of the Invest in ME proposal for a ‘Centre of Excellence for ME’ in Norfolk

Open Word document here: Norfolk Proposal Review 27.08.10

A text version of this Word document is published in the next post

 

Related information

Invest in ME

“Invest in ME is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (M.E.), as defined by WHO-ICD-10-G93.3.”

Invest in ME is constituted as a Trust, registered with the Charity Commission and run by a committee of three Trustees/Directors. Invest in ME is not a membership organisation. The organisation was founded in 2006 by carers and patients, Sue Waddle, Richard Simpson and Kathleen McCall (current chair). Ms Waddle has since stood down as a Trustee.

http://www.investinme.org/Research%20-%20ME%20Institute.htm

Invest in ME

A UK Centre for Biomedical Research into ME

Read the announcement here

The Research Proposal published by Invest in ME in July can be read here in PDF format:

       Biomedical Research Institute Proposal July 2010

“A New Era in ME/CFS Research 

“An Opportunity for Major Progress in Diagnosis, Treatment and Research into Myalgic Encephalomyelitis”

“A VISION FOR THE FUTURE

“Recent biomedical research and advances in knowledge and treatment regarding Myalgic Encephalomyelitis have brought more urgently needed awareness of this disease. In the East Anglian region of UK an opportunity now exists to bring real benefit to patients and establish a unique capability which will attract attention and recognition from across UK and Europe.”

 

Media coverage

Great Yarmouth Mercury

Hopes for ME centre in Norfolk raised

31 August 2010

“…The independent charity will carry out the official campaigning for funding for the centre once a formal agreement is made.

“Now the charity has offered to send some of the UEA researchers to a biomedical research symposium in Australia at the end of the year.

“Mr Simpson said: “This would involve them discussing work with the top ME researchers and clinicians in this field from around the world.

“Discussions are under way, and we are really hopeful this will move things forward. The centre could change the lives of patients with ME. Early diagnosis is so important, and this centre would help establish that.’

“The charity is also planning to organise a conference in Norwich with the UEA and the Norfolk and Norwich University Hospital and is lining up discussions with the US Whittemore Peterson Institute, an institute for neuro-immune disease in Nevada that helps thousands of people with ME through research, scientific developments and treatment…”

———————

Norwich Evening News

Plans for world class Norfolk centre

Sarah Hall  |  27 August 2010

———————

Environmental Illness Resource Blog

UK to get WPI Inspired Chronic Fatigue Syndrome Research and Treatment Centre

News – Chronic Fatigue Syndrome News

Matthew Hogg  |  13 August 2010

———————

EDP24

Norwich centre for ME sufferers planned

Sarah Hall  |  3 August 2010

Budget announces DLA reform

Budget announces DLA reform

Shortlink: http://wp.me/p5foE-2V4

Update:

Guardian  |  Comment is free  |  Anne Wollenberg  |  23 June 2010

Disability allowance exists for a reason

“The disability living allowance is not an unemployment benefit. Why target it to ‘reduce dependency and promote work’?”

There is a comment section, read full article here

 

Action for M.E.  |  22 June 2010

Budget 2010

Today’s budget announces DLA reform

Chancellor George Osborne’s first Budget has set out a five-year plan for the British economy.

Plans for spending reductions of £32 billion per year by 2014-15 include £11 billion of welfare reform savings, a two year freeze in public sector pay for those earning over £21,000 a year and an increase in the rate of Value Added Tax (VAT) to 20 per cent.

http://www.hm-treasury.gov.uk/junebudget_documents.htm

As part of the welfare reform measures, which will affect tax credits, housing benefit and disability benefits, the Treasury says: “The Government will reform the Disability Living Allowance (DLA) to ensure support is targeted on those with the highest medical need. The Government will introduce the use of objective medical assessments for all DLA claimants from 2013-14 to ensure payments are only made for as long as a claimant needs them.”

Action for M.E. will be responding to the budget shortly, so tell us: how will it impact on you, as a person with M.E. or their carer?

E-mail our Policy Officer, Tristana Rodriguez at tristana.rodriguez@afme.org.uk or our InterAction team at interaction@afme.org.uk  with your views.

Summary: ICD-11 Alpha Draft and iCAT (PVFS, ME and CFS)

Summary: ICD-11 Alpha Draft and iCAT (PVFS, ME and CFS)

Shortlink: http://wp.me/p5foE-2Ur

Compiled by Suzy Chapman Dx Revision Watch

May be republished if published in full, unedited and with source acknowledged. 

A version of this report was published on Co-Cure on 11 June 2010.

The information in this summary relates to proposals for ICD-11. It does not apply to ICD-10-CM, the forthcoming US “Clinical Modification” of ICD-10, scheduled for implementation in October 2013.

This report provides a summary of the material published on Dx Revision Watch site on 7 June that included screenshots from the iCAT, the wiki-like collaborative authoring platform through which ICD-11 is being drafted.

 

To view proposals as they currently stand, see the 12 screenshots here:

PVFS, ME, CFS: the ICD-11 Alpha Draft and iCAT Collaborative Authoring Platform, 7 June 2010, Post # 46: http://wp.me/pKrrB-KK

 

Presentation of an alpha draft to the WHA:

A hard copy “snapshot” of the ICD-11 alpha draft, as it stood at that point, was presented by WHO at the 63rd World Health Assembly meeting, between 17 and 25 May.

According to page 38 of the document “ICD-11 Revision Project Plan”:

“WHO will consider endorsement of the alpha draft, after all concerns of RSG and the Classification TAGs have been duly taken into account. The alpha draft is a frozen state of development of the ICD-11 that will include a large part of the structural changes, and the majority of the definitions. The Alpha draft will be produced in a traditional print and electronic format. The Alpha Draft will also include a Volume 2 containing the traditional sections and including a section about the new features of ICD-11 in line with the style guide. An index for print will be available in format of sample pages. A fully searchable electronic index using some of the ontological features will demonstrate the power of the new ICD” [1].

The date by which WHO anticipates this stage should be reached is unconfirmed.

Caveat

For better understanding, it is important that the brief iCAT Glossary page is read in conjunction with the iCAT screenshots, especially the Glossary entries for ICD-10 Code, ICD Title, Definition, and for the Terms: Synonyms, Inclusions and Exclusions [2].

Read the iCAT Glossary here:
http://apps.who.int/classifications/apps/icd/icatfiles/iCAT_Glossary.html

Secondly, it needs to be understood that the alpha draft is a “work in progress”. Not all content will have been compiled yet and entered into the iCAT and there are many blank fields awaiting population for all chapters and all categories. It also needs to be understood that some text already entered into the various “Details” fields may still be in the process of internal review.

Summary

In ICD-10, there is no textual content for the three terms “Postviral fatigue syndrome”, “Benign myalgic encephalomyelitis” and “Chronic fatigue syndrome” .

There are no definitions and the relationship between the three terms is not specified.

In ICD-11, categories will be defined through the use of multiple parameters: Title & Definition, Terms: Synonyms, Inclusions, Exclusions, Clinical Description, Signs and Symptoms, Diagnostic Criteria and so on, according to a common “Content Model” [3].

The level of detail currently visible in the iCAT isn’t sufficiently specific to enable me to present an unequivocal overview of current proposals for potential changes to hierarchy or for the specification of the relationships between the three terms of interest to us.

Based only on the information visible in the iCAT as it stood at 11 June 2010, it appears that instead of:

ICD-10: Volume 1: The Tabular List (version for 2007)

http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933

Chapter VI (6)

Diseases of the nervous system
(G00-G99)

[…]

Other disorders of the nervous system
(G90-99)

[…]

G93 Other disorders of brain

[…]

G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis

(with Chronic fatigue syndrome indexed to G93.3 in ICD-10: Volume 3: The Alphabetical Index)

what appears to be being proposed at this point for ICD-11 is that:

The classifications coded between G83.9 thru G99.8 in ICD-10 Chapter VI: Diseases of the nervous system, are being reorganised.

For ICD-11, Chapter 6, codings beyond G83.9 are represented by new parent classes numbered GA thru to GN;

example:

Chapter 6 VI Disorders of the nervous system

[…]
G80-G83 Cerebral palsy and other paralytic syndromes
GA Infections of the nervous system
GB Movement disorders and degenerative disorders
GC Dementias
GD Epilepsy and seizures
[…]
GN Other disorders of the nervous system

“GN Other disorders of the nervous system” is parent to five child classes which have been assigned the “Sorting labels” Gj90-Gj94.

(A Sorting label is a string that can be used to sort the children of a category. This is not the ICD code.)

Four of these five Gj9x classes have a complex hierarchy of child and grandchildren classes.

At Gj92, sits “Chronic fatigue syndrome”

“Gj92 Chronic fatigue syndrome” has no child classes of its own.

Next to “Gj92 Chronic fatigue syndrome” is an icon for “Category Notes and Discussions”.

There is one Category Note for Gj92 which records:

“[Reason for change]: Change in hierarchy for class: G93.3 Postviral fatigue syndrome. Parents added: (Gj90-Gj99 Other disorders of the nervous system). Parents removed: (G93 Other disorders of brain). New hierarchy”

(Note that the removal of the parent category “G93 Other disorders of brain” will affect a large number of categories classified under G93 in ICD-10, not just those at G93.3.)

In the iCAT production server, click on “Gj92 Chronic fatigue syndrome” and “Details for Gj92 Chronic fatigue syndrome” will display on the right of your screen (it may take a few seconds for the text to load). Or you can view the screenshots on my site: http://wp.me/pKrrB-KK

“Gj92 Chronic fatigue syndrome” is an ICD Title term with a Details page, a Definition and an Inclusions term (but with no Synonyms, Exclusions or other fields yet populated).

“Benign myalgic encephalomyelitis” is listed under Inclusions (the relationship is not currently specified, eg “Synonym” or “Subclass” or whatever).

Extract: iCAT Glossary

http://apps.who.int/classifications/apps/icd/icatfiles/iCAT_Glossary.html#inclusions

“Inclusion terms appear in the tabular list of the traditional print version and show users that entities are included in the relevant concept. All of the ICD-10 inclusion terms have been imported and accessible in the iCat. These are either synonyms of the category titles or subclasses which are not represented in the classification hierarchy. Since we have synonyms as a separate entity in our ICD-11 content model, the new synonyms suggested by the users should go into the synonyms section. In the future, iCat will provide a mechanism to identify whether an inclusion is a synonym or a subclass.”

————-

In the iCAT ICD Categories list, there is no Gj9x Sorting label listing for “Postviral fatigue syndrome” or “Benign myalgic encephalomyelitis” under “GN Other disorders of the nervous system” or under any other parent or child class, and consequently no Category Details display for either term.

(Whether this is because Inclusion terms would appear in the tabular list version but not in the iCAT version or whether this is because of proposed changes to the hierarchy and/or relationship between the three terms, cannot be determined from the information as it stands at 11 June.)

“Postviral fatigue syndrome” is not currently specified under Inclusions in “Details for Gj92 Chronic fatigue syndrome”.

Again, whether this is because “Postviral fatigue syndrome” would be accounted for in the tabular list version or whether this is because it may be being proposed that the term “Postviral fatigue syndrome” (which has lost its parent class “G93 Other disorders of brain”) should be subsumed into “Chronic fatigue syndrome”, with “Chronic fatigue syndrome” as the new ICD category Title, cannot be determined from the information as it currently stands.

Exclusions

If you pull up the iCAT Details for ICD-11 Chapter 5: F48.0 Neurasthenia (or view the screenshots on my site)

“postviral fatigue syndrome” is listed under Exclusions to Neurasthenia and is referenced thus:

“postviral fatigue syndrome”    G93.3 -> Gj92 Chronic fatigue syndrome

In iCAT Chapter 18: R53 Malaise and Fatigue

“fatigue syndrome postviral” [sic] is also listed under Exclusions, referenced

G93.3 -> Gj92 Chronic fatigue syndrome
 

But that in the absence of further information, it is currently unclear what the proposed hierarchical status of Postviral fatigue syndrome will be in relation to Chronic fatigue syndrome.

————-

When you click on the Category Notes icons for some other categories, the Notes are often more explicit, for example, the Category Note for:

GN Other disorders of the nervous system

> Gj90 Disorders of CSF pressure and flow
         > Gj90.0 Increased intracranial pressure disorders

Reads: [Reason for change]: Create class with name: Increased intracranial pressure disorders, parents: Disorders of CSF Pressure and Flow

replaces G93.5, G93.6, and G93.7

The Category Note for “Gj90 Disorders of CSF pressure and flow” records that this class has been created to replace:

G91, G92, G93.0, G93.2, G94.0, G94.1, G94.2, G96.0, G97.0, G97.1, G97.2

(which also gives an idea of the extent to which the structure of ICD-10 classifications between G90 – G99.8 is being reorganised.)

In the absence of an Alpha Draft, I shall be contacting the chair of the Topic Advisory Group for Neurology for further clarification.

**************************************************

So what can be said is that currently in the iCAT for ICD-11 drafting:

That under Chapter 6 (Neurology):

The parent class “G93 Other disorders of brain” is removed.

“Chronic fatigue syndrome” displays as a Title term in the Categories list.

It is a child to parent class “GN Other disorders of the nervous system”.

It has been assigned the “Sorting label” Gj92.

“Gj92 Chronic fatigue syndrome” has a Definition field populated.

It has an External Definitions field populated which includes definitions imported from other classification systems, the text of which includes “Also known as myalgic encephalomyelitis”.

It has “Benign myalgic encephalomyelitis” specified under Inclusions.

It has no Synonyms, Exclusions or other descriptor fields populated yet.

That at this point and as far as the iCAT version is concerned, neither “Postviral fatigue syndrome” nor “Benign myalgic encephalomyelitis” have been listed as ICD Title terms under the parent class “GN Other disorders of the nervous system” or under any other class.

That at this point and as far as the iCAT version is concerned, there is no accounting for “Postviral fatigue syndrome”, other than that “Postviral fatigue syndrome” is specified under Exclusions to Chapter 5 F48.0 Neurasthenia and to Chapter 18 R53 Malaise and fatigue and is referenced as

“postviral fatigue syndrome” G93.3 -> Gj92 Chronic fatigue syndrome

**************************************************

So please read the iCAT Glossary of Terms page, have a look at the screenshots and then have a poke around in the iCAT – you can’t break anything as members of the public have no editing rights [4].

I shall continue to monitor the iCAT production server closely and report on any changes to proposals for Category listings and on the progress of the population of content. (There has been no change since this report was compiled.)

And if you were thinking of getting a G93.3 tattoo done – well it might be best to hang on for a bit…

References:

[1] ICD-11 Revision Project Plan – Draft 2.0 (v March 10)
Describes the ICD revision process as an overall project plan in terms of goals, key streams of work, activities, products, and key participants:
http://www.who.int/classifications/icd/ICDRevisionProjectPlan_March2010.pdf

[2] iCAT Glossary
http://apps.who.int/classifications/apps/icd/icatfiles/iCAT_Glossary.html

[3] Content Model Specifications and User Guide (v April 10)
Identifies the basic properties needed to define any ICD concept (unit, entity or category) through the use of multiple parameters:
http://tinyurl.com/ICD11ContentModelApril10

[4] iCAT production server and Demo and Training iCAT Platform:
https://sites.google.com/site/icd11revision/home/icat
iCAT production server: http://icat.stanford.edu/
Demo and Training iCAT Platform: http://icatdemo.stanford.edu /

Compiled by Suzy Chapman
http://dxrevisionwatch.wordpress.com
https://meagenda.wordpress.com

US “Clinical Modification” ICD-10-CM: Clarification

US “Clinical Modification” ICD-10-CM: Clarification

Shortlink: http://wp.me/p5foE-2Ul

This post is intended to clarify any confusion between ICD-10, ICD-11 and the forthcoming US Clinical Modification of ICD-10 which will be known as ICD-10-CM.

The WHO published ICD-10 in 1992. The current version of ICD-10 (Version for 2007) is used in the UK and in many countries throughout the world.

ICD-10 is under revision and the development of the structure and content of ICD-11 has been underway since 2007. ICD-11 is scheduled for completion in 2014.

 

Clinical Modifications

Several countries are permitted to publish adaptations of the ICD called “Clinical Modifications” (sometimes known as “national modifications”).

Countries using Clinical Modifications of ICD-10 include Canada (ICD-10-CA), Australia (ICD-10-AM) and Germany (ICD-10-GM).

The United States currently uses an adaptation of the WHO’s now retired ICD-9, called ICD-9-CM, and has been slow to move onto ICD-10.

Rather than skip ICD-10 and move straight onto ICD-11 in 2014+, the US has been developing a modification of ICD 10 called ICD-10-CM which will replace ICD-9-CM.

ICD-10-CM is due for implementation in October 2013.

According to one report, the US should not expect to move on to ICD-11 (or a modification of ICD-11) until well after 2020, assuming that the ICD-11 Beta is published around the 2014-2015 projection:

Why move to ICD-10, if ICD-11 is on the horizon?
http://www.healthcarefinancenews.com/news/why-move-icd-10-if-icd-11-horizon

 

What are the proposed classifications and codings for PVFS, (Benign) ME and Chronic fatigue syndrome for ICD-10-CM?

In March 2001, the document:

“A Summary of Chronic Fatigue Syndrome and Its Classification in the International Classification of Diseases Prepared by the Centers for Disease Control and Prevention, National Center for Health Statistics, Office of the Center Director, Data Policy and Standards”

provided a concise “summary of the classification of Chronic Fatigue Syndrome in the International Classification of Diseases (ICD), ninth and tenth revisions, and their clinical modifications.”

That document is archived here: http://www.co-cure.org/ICD_code.pdf

In 2001, the proposal had been:

“In keeping with the placement in the ICD-10, chronic fatigue syndrome (and its synonymous terms) will remain at G93.3 in ICD-10-CM.”

So at that point, it was being proposed for the forthcoming US ICD-10-CM that PVFS, (Benign) ME and Chronic fatigue syndrome would be coded at G93.3, which would have placed all three terms in Chapter VI: Diseases of the nervous system (the Neurological chapter).

But the current proposals for ICD-10-CM propose classifying Chronic fatigue syndrome in Chapter 18, under R53 Malaise and fatigue, at R53.82.

The “R” codes are classified under

CHAPTER 18 (XVIII)
Symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R99)

This chapter includes symptoms, signs, abnormal results of clinical or other investigative procedures, and ill defined conditions regarding which no diagnosis classifiable elsewhere is recorded…

Note: this is not the ICD-10-CM Mental and Behavioural chapter, which is:

CHAPTER 5 (V)
Mental and behavioral disorders (F01-F99)
Includes: disorders of psychological development
Excludes2: symptoms, signs and abnormal clinical laboratory findings, not elsewhere classified (R00-R99)

which specifically excludes the R00-R99 codes.

So the current proposal for ICD-10-CM separates CFS and Postviral fatigue syndrome into mutually exclusive categories:

“Chronic fatigue, unspecified” and “Chronic fatigue syndrome not otherwise specified” appear in Chapter 18, under R53 Malaise and fatigue, at R53.82.

Whilst “Postviral fatigue syndrome” and “benign myalgic encephalomyelitis” appear in Chapter 6, under G93 Other disorders of brain, at G93.3.

At some point before October 2013, ICD-10-CM revision will be “frozen” for Centers for Medicare and Medicaid Services (CMS) and insurance companies to prepare for the October 1, 2013 implementation.

See Tom Sullivan at ICD10 Watch.com (no connection with my site) here:

CMS, CDC call for ICD-9 and ICD-10 code freeze
http://icd10watch.com/headline/cms-cdc-call-icd-9-and-icd-10-code-freeze

“CMS, the Centers for Medicare and Medicaid Services, along with CDC, the Centers for Disease Control and Prevention, proposed that both ICD-9-CM and ICD-10-CM/PCS code sets be frozen two years before the compliance deadline.

“What that means: As of October 1, 2011, only limited updates would be instituted into the code sets so that providers, payers, clearinghouses, and health IT vendors, will not have to simultaneously keep pace with code updates while also reconfiguring their existing systems for ICD-10-CM/PCS.” ICD10 Watch.com

During the last ten minutes of the CFSAC meeting on Monday, 10 May, Dr Lenny Jason raised his concerns with the committee that the placement of CFS in ICD-10-CM in the Chapter 18 “R” codes could be problematic.

Videocast of full CFSAC meeting here:
http://videocast.nih.gov/Summary.asp?File=15884

In August 2005, CFSAC had submitted the following recommendation to the Secretary:

http://www.hhs.gov/advcomcfs/recommendations/082005.html

“Recommendation 10: We would encourage the classification of CFS as a ‘Nervous System Disease,’ as worded in the ICD-10 G93.3.”

I suggest that US advocates with concerns about current proposals for the placement of CFS within ICD-10-CM keep a close eye on decisions about the date by which ICD-10-CM is to be frozen.

For the most recent ICD-10-CM proposals see:

http://www.cdc.gov/nchs/icd/icd10cm.htm

The 2010 update of ICD-10-CM is now available and replaces the July 2009 version.

The file for the Tabular List is in a Zipped file which is not that easy to locate on the site. A non Zipped PDF can be downloaded from this site:

http://www.cms.gov/ICD10/12_2010_ICD_10_CM.asp#TopOfPage
http://www.cms.gov/ICD10/Downloads/6_I10tab2010.pdf

or open the PDF on my Dx Revision Watch site, here
http://dxrevisionwatch.files.wordpress.com/2009/12/i10tab2010.pdf

ICD-10-CM CHAPTER 18

Tabular List of Diseases and Injuries Page 1165 (Update for 2010)

R53 Malaise and fatigue

[…]

R53.8 Other malaise and fatigue

Excludes1: combat exhaustion and fatigue (F43.0)
congenital debility (P96.9)
exhaustion and fatigue due to:
depressive episode (F32.-)
excessive exertion (T73.3)
exposure (T73.2)
heat (T67.-)
pregnancy (O26.8-)
recurrent depressive episode (F33)
senile debility (R54)

R53.81 Other malaise

Chronic debility
Debility NOS
General physical deterioration
Malaise NOS
Nervous debility
Excludes1: age-related physical debility (R54)

R53.82 Chronic fatigue, unspecified

Chronic fatigue syndrome NOS
Excludes1: postviral fatigue syndrome (G93.3)

R53.83 Other fatigue

Fatigue NOS
Lack of energy
Lethargy
Tiredness

 

ICD-10-CM CHAPTER 6 Page 325 (Update for 2010)

Diseases of the nervous system (G00-G99)

Excludes2:

[…]
symptoms, signs and abnormal clinical and laboratory findings, not elsewhere classified (R00-R94)

[…]

G93 Other disorders of brain

[…]

G93.3 Postviral fatigue syndrome

Benign myalgic encephalomyelitis
Excludes1: chronic fatigue syndrome NOS (R53.82)

For comparison:

German Modification ICD-10-GM
http://www.dimdi.de/static/de/klassi/diagnosen/icd10/htmlgm2010/block-g90-g99.htm

ICD-10-GM Version 2010

Kapitel VI
Krankheiten des Nervensystems
(G00-G99)

G93.- Sonstige Krankheiten des Gehirns

[…]

G93.3 Chronisches Müdigkeitssyndrom

Benigne myalgische Enzephalomyelitis
Chronisches Müdigkeitssyndrom bei Immundysfunktion
Postvirales Müdigkeitssyndrom

For comparison:

Canadian Modification ICD-10-CA

(Version 2009 of ICD-10-CA/CCI replaces version 2006)

http://secure.cihi.ca/cihiweb/dispPage.jsp?cw_page=codingclass_e

Version 2009 ICD-10-CA Tabular List, Volume 1 PDF (4.9MB)
http://secure.cihi.ca/cihiweb/en/downloads/ICD-10-CA_Vol1_2009.pdf

Version 2009 ICD-10-CA Alphabetical Index, Volume 2 PDF (4.3MB)
http://secure.cihi.ca/cihiweb/en/downloads/ICD-10-CA_Vol2_2009.pdf

Chapter VI

Diseases of the nervous system
(G00-G99)

Other disorders of the nervous system
(G90-99)

[…]

G93 Other disorders of brain

[…]

G93.3 Postviral fatigue syndrome

Includes: Benign myalgic encephalomyelitis
Chronic fatigue syndrome

Excludes: fatigue syndrome NOS (F48.0)

For comparison with WHO ICD-10:

Current ICD-10 codings for the three terms are set out on my site, here, together with extracts from Chapter V (the “F” codes) and Chapter XVIII (the “R” codes):

http://dxrevisionwatch.wordpress.com/icd-11-me-cfs/

or go here for the full ICD-10 Volume 1: Tabular List

http://apps.who.int/classifications/apps/icd/icd10online/

ICD-10 Version for 2007 online
http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933

Chapter VI

Diseases of the nervous system
(G00-G99)

Other disorders of the nervous system
(G90-99)

[…]

G93 Other disorders of brain

[…]

G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis

Note that in ICD-10, Chronic fatigue syndrome is not included in Volume 1: The Tabular List, Chapter VI under the parent term:

G93 Other Disorders of brain

but “Chronic fatigue syndrome” does appear in Volume 3: The Alphabetical Index, where it is indexed to G93.3.

In a forthcoming post, I shall be publishing important information about proposals for parent terms, classifications and codings in the ICD-11 Alpha Draft.

 

Related material:

ICD-9-CM

For information on the current codings in ICD-9-CM (US Clinical Modification) see the NAME U.S. page: WHO ICD Codes section

American Psychiatric Association on DSM-5

In a 10 December Press Release, the American Psychiatric Association said:

“Extending the timeline [for DSM-5] will allow more time for public review, field trials and revisions”

and

“The extension will also permit the DSM-5 to better link with the U.S. implementation of the ICD-10-CM codes for all Medicare/Medicaid claims reporting, scheduled for October 1, 2013. Although ICD-10 was published by the WHO in 1990, the “Clinical Modification” version (ICD- 10-CM) authorized by the U.S. Centers for Medicare and Medicaid Services (CMS) and the Centers for Disease Control (CDC) is not being implemented in the U.S. until 23 years later.

“The ICD-10-CM includes disorder names, logical groupings of disorders and code numbers but not explicit diagnostic criteria. The APA has already worked with CMS and CDC to develop a common structure for the currently in-use DSM-IV and the mental disorders section of the ICD- 10-CM.

“The International Classification of Diseases (ICD) is published by the WHO for all member countries to classify diseases and medical conditions for international health care, public health, and statistical use. The WHO plans to release its next version of the ICD, the ICD-11, in 2014.

“APA will continue to work with the WHO to harmonize the DSM-5 with the mental and behavioral disorders section of the ICD-11. Given the timing of the release of both DSM-5 and ICD-11 in relation to the ICD-10-CM, the APA will also work with the CDC and CMS to propose a structure for the U.S. ICD-10 CM that is reflective of the DSM-5 and ICD-11 harmonization efforts. This will be done prior to the time when the ICD-10-CM revisions are “frozen” for CMS and insurance companies to prepare for the October 1, 2013, adoption.”

ICD-11 Alpha Draft, iCAT Collaborative Authoring Platform and PVFS, ME, CFS

ICD-11 Alpha Draft, iCAT Collaborative Authoring Platform and PVFS, ME, CFS

Shortlink: http://wp.me/p5foE-2Ui

The information in this report relates to proposals for ICD-11. It does not apply to ICD-10-CM, the forthcoming US “Clinical Modification” of ICD-10.

 

Whither the ICD-11 Alpha Draft?

According to documents published by the ICD Revision Steering Group (RSG) and the Agenda for the iCAMP2 and Revision Steering Group meeting on 19-23 April 2010, it was projected that an alpha draft for ICD-11 would be ready by 10 May 2010 [Key document 1a].

The RSG meeting Agenda proposed that the alpha draft should be presented to the World Health Assembly (WHA) between 17-25 May. A proposal for a press launch was also tabled for discussion.

It is understood that the ICD-11 alpha draft is being created for internal users, was not expected to be complete by May 2010, but released as a “work in progress” towards the beta stage. The beta draft for ICD-11 is scheduled for 2011, which will be subjected to systematic field trials and then made available for public comment.

10 May has come and gone, and there has been no public launch of an alpha draft or the iCAT – the wiki-like collaborative authoring platform through which ICD-11 is being drafted.

As the Minutes of the April RSG meeting are not yet available, it remains unclear how on target the alpha draft is or whether the goals for 2010 have had to be revised. (See Page 7, ICD-11 Revision Project Plan – Draft 2.0 for Project milestones and budget, and organizational overview.)

When the RSG does release information on the status of the alpha draft and the operational status of the iCAT, I will post an update.

In the meantime, I have raised a number of queries around the status of the alpha draft, whether the RSG intends to make a draft available for public viewing, at what point, and in what format(s). I have also asked for information about the availability of Topic Advisory Group proposal forms for stakeholder input, up to what stage in the development process timeline these might be used, and which stakeholders are going to be permitted to make use of proposal forms.

 

iCAT production server

In the posting ICD-11 Alpha Draft scheduled to launch between 10 and 17 May, 6 May, I reported that it is already possible to view a “Demo and Training iCAT Platform” and also access the iCAT production server.

I cautioned that until an official ICD-11 Alpha Draft is released, it cannot be determined how far the various Topic Advisory Groups have progressed with revising classifications and populating textual content according to a common “Content Model” for the ICD Chapters and categories of interest to us [Key document 1b].

I noted that the Demo and Training iCAT Platform, at that point, was sparsely populated for content and that the classifications and codings listed within the various chapters appeared to have been imported from ICD-10, with little discernable change – presumably as the starting point for the drafting process.

A revised Demo and Training iCAT Platform is now accessible, the content of which is also viewable on the iCAT production server and it is to these proposed revisions that I want to draw your attention.

Note that anyone can view the Demo and Training iCAT Platform and iCAT production server but only WHO, ICD Revision and IT personnel and the Managers and members of the various Topic Advisory Groups (TAGS)will have editorial access. External reviewers recruited by TAG Managers will also use the iCAT to upload reviews and comment on proposals and content.

I have compiled a series of screenshots and very brief notes on what is viewable at the moment for the chapters and categories of interest to us.

Note: Screenshots are taken from the Demo and Training iCAT Platform and iCAT production server as they stood at 24 May 2010. Alpha drafting is an ongoing process and what currently appears may be subject to revision, refinement and additions before an official Alpha Draft is released. Not all the classification and content work currently undertaken may have been entered into the iCAT.

Note also that when viewing the iCAT in your browser, the left hand side of the screen displays the ICD Categories listings with the category Definition, Term, Clinical Description, Diagnostic Criteria etc displaying on the right of the screen. Because this view is too wide to display on my website template, the screenshots have had to be split in two. On your screen the iCAT will look like this:

 

When you have read this report and familiarised yourself with the way the iCAT functions, I suggest you poke around – you can’t break anything as members of the public have no editing access.

All screenshots as they stood at 24 May 2010

A wiki-like Collaborative Authoring Tool (known as the iCAT)) is being used for the initial authoring of the alpha draft.

The iCAT production server and Demo and Training iCAT Platform can be accessed here:

https://sites.google.com/site/icd11revision/home/icat

iCAT production server at: http://icat.stanford.edu/

Demo and Training iCAT Platform at: http://icatdemo.stanford.edu/

Load either (they may take a minute or more to load and appear less inclined to hang in Firefox).

One loaded, you will be presented with an Entry Page – this is the My ICD Tab

Welcome to iCAT – the Initial ICD 11 Collaborative Authoring Tool!

Select the ICD Content Tab and ICD Categories by chapter will populate down the left side of the screen.

Scroll down and open up the + next to 06 VI Diseases of the nervous system

ICD Categories:

 

Scroll down and note that ICD-10 codings between G83.9 and G99.8 are being reorganised and have been assigned the labels GA thru GN (some of which, like GN, are parent categories with child and grandchildren categories).

Open up the + next to GN Other disorders of the nervous system

which is a parent to category Gj92 Chronic fatigue syndrome

(Note: Gj92 is known as a “Sorting label”. A Sorting label is a string that can be used to sort the children of a category. This is not the ICD code.)

Note that Postviral fatigue syndrome and Benign myalgic encephalomyelitis are not currently accounted for in the ICD Categories List as children of the parent category GN Other disorders of the nervous system. Only Chronic fatigue syndrome is listed and assigned the Sorting Label “Gj92”. [See Glossary: Inclusions]

 

 

Click on the double speech bubble icon next to Gj92 Chronic fatigue syndrome which will display 1 Category Discussion Note (Click Expand to display the full note. Discussion Notes can also be accessed via the Category Notes and Discussions Tab, from which the screenshot below, orginates).

Discussion Note for Gj92 Chronic fatigue syndrome:

This Discussion Note records a Change in hierarchy for class: G93.3 Postviral fatigue syndrome because its parent category (G93 Other disorders of brain) is removed.

Note that the removal of the parent G93 Other disorders of brain will affect other categories also classified under G93 in ICD-10, not just G93.3. Open up the double speech bubble icons next to other category listings and you can view the Discussion Notes on proposed restructuring for other G8x and G9x categories.

Next, with the ICD Content Tab selected, click on Gj92 Chronic fatigue syndrome and the Details for Gj92 Chronic fatigue syndrome will display on the right side of the screen. Allow a few moments for the text in the boxes to load.

With the Title & Definition Tab selected (the Tab may read Definition only, depending on whether you are viewing the iCAT production server or the Demo iCAT), you can view the

Details for Gj92 Chronic fatigue syndrome

To view a Glossary of Terms page, which defines the terms in the Tabs click on the blue question mark icons which will load the iCAT Glossary.

Content for Gj92 Chronic fatigue syndrome:

[See Glossary: Definition] The full text of External Definitions (imported from affiliate classification publications) which is partly hidden in the screenshot, is appended at end of this post. According to discussion on the iCAT Users Google Group, it is proposed that External Definitions might be given less prominence when displaying in the iCAT.

 

Now click on the Terms Tab.

Terms for Gj92 Chronic fatigue syndrome:

Benign myalagic encephalomyelitis currently appears listed under Inclusions to Gj92 Chronic fatigue syndrome.

Note that Postviral fatigue syndrome is not listed under Inclusions and that Synonyms and Exclusions for Gj92 Chronic fatigue syndrome have yet to be populated. [See Glossary: Synonyms, Inclusions, Exclusions]

Very few of the other Content Tabs have been populated but it is envisaged that they will be in due course.

I provide no screenshots for Benign myalagic encephalomyelitis or Postviral fatigue syndrome because these are not listed in the ICD Categories List. [See Glossary: ICD Title, Synonyms, Inclusions, Exclusions]

Extract from the iCAT Glossary

6. Inclusions

Short definition: Inclusion terms are either synonyms of the category titles or subclasses which are not represented in the classification hierarchy.

Details: Inclusion terms appear in the tabular list of the traditional print version and show users that entities are included in the relevant concept. All of the ICD-10 inclusion terms have been imported and accessible in the iCat. These are either synonyms of the category titles or subclasses which are not represented in the classification hierarchy. Since we have synonyms as a separate entity in our ICD-11 content model, the new synonyms suggested by the users should go into the synonyms section. In the future, iCat will provide a mechanism to identify whether an inclusion is a synonym or a subclass.

7. Exclusions

Short definition: Exclusion terms help users eliminate entities that should be assigned to a different ICD category because of differences in meaning or terminology.

Details: Exclusion terms help users eliminate entities that should be assigned to a different ICD category because of differences in meaning or terminology.

 

I am including some screenshots of other Chapters which will be of interest.

Chapter 5 (V) Somatoform Disorders at F45 (currently same as or near ICD-10):

 

Neurasthenia remains in Chapter 5 (V) at F48.0:

 

Inclusions and Exclusions for Neurasthenia:

 

Chapter 18 (XVIII) displaying R53 Malaise and fatigue (this is the Chapter under which the US Clinical Modification, ICD-10-CM, proposes classifying Chronic fatigue syndrome, at R53.82):

 

Inclusions and Exclusions for R53 Malaise and fatigue:

 

Here are the two Category discussion Notes that appear directly beneath 06 VI Diseases of the nervous system (no ICD10 concepts from Chapter 06 VI are currently moved into either of these “holding pens”).

1 Discussion Note for: Needing a decision to be made

 

1 Discussion Note for: To be retired

________________________________________________________________________

  

External Definitions: (Imported from affiliate classification publications, these remain the same as my 6 May posting.)

External Definitions for Gj92 Chronic fatigue syndrome

A syndrome of unknown etiology. Chronic fatigue syndrome (CFS) is a clinical diagnosis characterized by an unexplained persistent or relapsing chronic fatigue that is of at least six months duration, is not the result of ongoing exertion, is not substantially alleviated by rest, and results in substantial reduction of previous levels of occupational, educational, social or personal activities. Common concurrent symptoms of at least six months duration include impairment of memory or concentration, diffuse pain, sore throat, tender lymph nodes,headaches of a new type, pattern, or severity, and nonrestorative sleep. The etiology of CFS may be viral or immunologic. Neurasthenia and fibromyalgia may represent related disorders. Also known as myalgic encephalomyeltis.

Ontology ID UMLS/NC12007_05
E

distinctive syndrome characterized by chronic fatigue, mild fever, lymphadenopathy, headache, myalgia, arthralgia, depression, and memory loss: candidate eitiological agents include Epstein-Barr and other herpesviruses.

Ontology ID UMLS/CSP2006

A syndrome characterized by persistent or recurrent fatigue, diffuse musculoskeletal pain, sleep disturbances, and subjective cognitive impairment of 6 months duration or longer. Symptoms are not caused by ongoing exertion; are not relieved by rest; and result in a substantial reduction of previous levels of occupational, educational, social or personal activities. Minor alterations of immune, neuroendocrine, and automatic function may be associated with this syndrome. There is also considerable overlap between this condition and FIBROMYALGIA.
(From Semin Neurol 1998;18(2):237-42: Ann Intern Med 1994 Dec 15;121(12):953-9)

Ontology ID UMLS/MSH2008_2
008_02_04

 

Based only on the information visible in the iCAT as it stood at 24 May 2010, it appears that instead of:

ICD-10 (version for 2007) Tabular List

http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933

Chapter VI (6)

Diseases of the nervous system
(G00-G99)

[…]

Other disorders of the nervous system
(G90-99)

[…]

G93 Other disorders of brain

[…]

G93.3 Postviral fatigue syndrome
Benign myalgic encephalomyelitis

(with Chronic fatigue syndrome indexed to G93.3 in Volume 3: The Alphabetical Index)

that what may be being proposed at this point is:

that G83.9-G99.8 codes in ICD-10 Chapter VI: Diseases of the nervous system are being restuctured;

that G93 Other disorders of brain is removed as a parent category for G93.x codings;

that GN Other disorders of the nervous system

is now the parent to a large number of categories previously classified between G83.9 and G99.8

that GN Other disorders of the nervous system is the parent to

Gj92 (Sorting label) Chronic fatigue syndrome

that Gj92 Chronic fatigue syndrome is included in ICD-11 Chapter 06 VI Diseases of the nervous system (Neurology chapter) in the ICD Categories list as an ICD Title term;

that there is currently displaying no Gj9x Sorting label (or any other Sorting label) listing for Postviral fatigue syndrome or Benign myalgic encephalomyelitis in ICD Categories list or any Category Details for either term;

(Whether this is because Inclusion terms appear in the tabular list of the traditional print version but not in the iCAT version, or because of proposed hierarchy changes to the relationship between these three terms or because text remains to be entered into the iCAT for these two terms, cannot be determined from the information available at 10 June – please refer to Glossary of Terms which sets out the relationships between an ICD Title and its inclusion in the iCAT Categories list and between an ICD Title and its Synonyms, Inclusions and Exclusions.)

that Gj92 Chronic fatigue syndrome is an ICD Title term with a Details page, a Definition and an Inclusion term (but with no Synonyms or Exclusions or other fields yet populated);

that Benign myalgic encephalomyelitis is listed as an Inclusion to Gj92 Chronic fatigue syndrome

that Chapter 5 V Details for F48.0 Neurasthenia specifies
“postviral fatigue syndrome” as an Exclusion with References

G93.3 -> Gj92 Chronic fatigue syndrome

that Chapter 18 XVIII Details for R53 Malaise and Fatigue specifies
“fatigue syndrome postviral” [sic] as an Exclusion with References

F48.0 -> F48.0 Neurasthenia,
G93.3 -> Gj92 Chronic fatigue syndrome

but that in the absence of further information, it is currently unclear what the proposed hierarchical status of Postviral fatigue syndrome and Benign myalgic encephalomyelitis will be in relation to Chronic fatigue syndrome, and in relation to each other.

I shall continue to monitor the iCAT production server closely and report on any changes to proposals for Category listings and on the progress of the population of content.

 

[1] Key documents:

a) ICD-11 Revision Project Plan – Draft 2.0 (v March 10) [PDF format]
Describes the ICD revision process as an overall project plan in terms of goals, key streams of work, activities, products, and key participants.

b) Content Model Specifications and User Guide (v April 10)
Identifies the basic properties needed to define any ICD concept (unit, entity or category) through the use of multiple parameters.

c) Alpha Drafting Workflow (v 06.10.09)
Sets out lines of responsibility between the various contributors for the alpha drafting phase.

d) Further documents eg Style Guide, ICD-11 Conventions:
ICD Revision Google site

ICD-10-CM codings raised at 10 May CFSAC meeting

ICD-10-CM raised at 10 May CFSAC meeting

Shortlink: http://wp.me/p5foE-2SF

A one day public meeting of the US Chronic Fatigue Syndrome Advisory Committee (CFSAC) was held on Monday, 10 May. Minutes of the previous two day meeting and a Videocast of the proceedings of both days (with subtitles) can be accessed here and here.

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Department of Health and Human Services on issues related to chronic fatigue syndrome (CFS). More information here [PDF].

Towards the end of the Spring meeting, Dr Leonard Jason, PhD, raised concerns in response to current proposals for the placement of CFS within the forthcoming US “Clinical Modification”, ICD-10-CM, due to be implemented in October 2013. (See foot of this Dx Revision Watch page for current ICD-10-CM proposals.)

Agenda for this Spring 2010 meeting here

CFSAC Agenda – May 10, 2010
Chronic Fatigue Syndrome Advisory Committee
US Department of Health and Human Services

Meeting was webcast live at http://videocast.nih.gov

Webcast of entire meeting with subtitles is now available to view here

Chronic Fatigue Syndrome Advisory Committee
Monday, May 10, 2010
HHS Office on Women’s Health (OWH)
Total Running Time: 05:47:57

More information here: http://videocast.nih.gov/Summary.asp?File=15884

Presentations, Public Testimonies and Written Testimonies here

Transcripts are being compiled on a dedicated Facebook site here

YouTubes videos here:

New Hillary Johnson blog post – “Sif-Sac, again.” here

Cort Johnson blog

A very different looking federal advisory committee on CFS (CFSAC) discussed its charter, its recommendations, XMRV and the blood supply, what the CDC program will look and more. Asst Secretary of Health Dr. Koh, Annette Whittemore and Kim McCleary spoke. Check out the goings on at the CFSAC meeting in

‘The CFSAC on Itself, XMRV, the CDC and More’ from the Bringing the Heat blog:

Phoenix Rising forum thread here

CFSAC Agenda – May 10, 2010

May 10, 2010

9:00 am
Call to Order
Opening Remarks

Roll Call, Housekeeping
Dr. Christopher Snell
Chair, CFSAC

Dr. Wanda Jones
Designated Federal Official

9:15 am
Welcome Statement from the Assistant Secretary for Health

New Members Statement on CFSAC Interests/Goals
Dr. Howard K. Koh

CFSAC New Members

10:00 am
Remarks from Dr. Elizabeth Unger
Dr. Elizabeth Unger

10:30 am
Blood Safety Update on XMRV
Dr. Jerry Holmberg

11:00 am
Review/Update of past CFSAC recommendations
Committee Members

12:30 pm
Subcommittee Lunch
Subcommittee Members

1:30 pm
Public Comment
(on CFSAC charter)
Public

2:00 pm
Review and Discussion of CFSAC Charter and ByLaws
Committee Members

4:00 pm
Adjourn

ICD-11 Alpha Draft: launch scheduled 10 – 17 May

ICD-11 Alpha Draft: launch scheduled 10 – 17 May

Shortlink: http://wp.me/p5foE-2Sg

Note that until the ICD-11 Alpha Draft is released, it cannot be determined how far the various Topic Advisory Groups have progressed with proposals for revising ICD-10 classifications or with populating definitions and other content according to the ICD Content Model. Proposals for revision of classifications and textual content may differ from the examples on the Demo and Training iCAT platform as it appeared on the date this report was compiled (accessed 06.05.10).

The ICD-11 Alpha Draft and iCAT (Initial ICD-11 Collaborative Authoring Tool) is anticipated to be launched by the WHO between 10 and 17 May.  See this Dx Revision Watch report

Also note that information in this report applies to the revision of ICD-10 towards ICD-11. Countries using a “Clinical Modification” of ICD, for example, Canada (ICD-10-CA), the USA (implementing ICD-10-CM, in October 2013), Australia (ICD-10 AM) and Germany (ICD-10-GM) should refer to their specific national modification of ICD.