Live streaming of CFSAC Meeting (US) today, 10-11 May

May 10, 2011 by

Live streaming of CFSAC Meeting (US) today, 10-11 May

Post #76 Shortlink: http://wp.me/pKrrB-14n

Chronic Fatigue Syndrome Advisory Committee (CFSAC)
May 10-11, 2011
Room 800, Hubert H. Humphrey Building
200 Independence Ave, S.W.
Washington, D.C. 20201

A reminder that Day One of the two day spring CFSAC meeting will be streaming live today.

A copy of the Meeting Agenda is published in this post:

CFSAC Spring 2011 Meeting Agenda (May 10-11): http://wp.me/pKrrB-126

Public and Written Testimonies can be read and downloaded from this page of the CFSAC website:

http://www.hhs.gov/advcomcfs/meetings/presentations/05102011.html

The meeting proceedings can be watched live at this page (Requires Windows Media Player version 9 or higher or Silverlight Player installed): http://nih.granicus.com/ViewPublisher.php?view_id=26

The archived videocasts have had simultaneous subtitles.

The meeting opens at 9.00am Washington D.C. time (which is around 5 hours time difference with UK).  So streaming should commence  about five minutes before 2.00pm UK time (usually the microphones are switched off until just before the meetings starts, so anticipate video only until the meeting is called to order).

ICD-10-CM proposed coding issue

I am very pleased that the issue of the proposed coding for CFS in the forthcoming ICD-10-CM (a US specific “Clinical Modification” of ICD-10 scheduled for implementation in October 2013 and subject to a partial code freeze, in October 2011) has been placed back on the agenda and that an hour’s time has been tabled for discussion of this important item.

Discussion of ICD-10-CM is tabled to start at 1.15pm Washington D.C. time (6.15pm UK time).

1:15 p.m. Discussion of International Classification of Diseases-Clinical Modification (ICD-CM) concerns     Committee Members

During the Public Testimony sessions, US patient and patient advocate, Mary Schweitzer, Ph.D., will be speaking about the CDC and also references the ICD-10-CM coding issue:

http://www.hhs.gov/advcomcfs/meetings/presentations/publictestimony_201105_schweitzer.pdf

[…]

NCHS, within CDC, is overseeing the development of ICD-10-CM. We need to keep CFS in the same code as in ICD-10 – under neurology, at G93.3. That’s where it is in WHO’s index to ICD-10 – adopted by over one hundred nations. It’s also under G93.3 in the tabular versions of the clinical modifications produced by Canada, Germany, and Australia. It should not be placed in R53.82, under “vague signs and symptoms.” We would be the only nation to have CFS in R53.82. Why?

A one page handout outlining the ICD-10-CM coding issue is being circulated at the meeting and can be read here: CFSAC Handout ICD-10-CM 10 May 2011

Filed under CFIDS Association, CFSAC meetings, Clinical Modification, DSM revision process, ICD-10, ICD-10-CM, ICD-11, ICD-11 Alpha Draft, Professor Peter White, WHO (World Health Organization), WHO Collaborating Centre

CFSAC Spring 2011 Meeting Agenda (May 10-11)

April 29, 2011 by

CFSAC Spring 2011 Meeting Agenda (May 10-11)

Post #72 Shortlink: http://wp.me/pKrrB-126

The Agenda for the next meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) has been issued and can be read on the CSFSAC website here and below.

Transcripts of some Public and Written Testimonies for the May meeting can be read on this page of the CFSAC website.

“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). These include:

  • factors affecting access and care for persons with CFS;
  • the science and definition of CFS; and
  • broader public health, clinical, research and educational issues related to CFS.

“Administrative and management support for CFSAC activities is provided by the Office of the Assistant Secretary for Health (OASH). However, staffing will continue to be provided primarily from the Office on Women’s Health, which is part of OASH.

“Dr. Wanda K. Jones, Principal Deputy Assistant Secretary for Health in OASH, will continue in her role as the Designated Federal Officer for CFSAC.”

I am pleased to see that discussion of concerns around the proposed coding of CFS for the forthcoming US specific “Clinical Modification” of ICD-10, which is known as “ICD-10-CM”, has been tabled for further discussion, at 1.15pm on Day One of  the meeting.

CFSAC Spring 2011 Meeting Agenda (May 10-11)

Day One

9:00 a.m.

Call to Order
Opening Remarks

Dr. Christopher Snell
Chair, CFSAC

Roll Call, Housekeeping

Dr. Wanda Jones
Designated Federal Official

9:15 a.m.

Agency Updates and Progress on Recommendations: CDC, HRSA, AHRQ, FDA, CMS

Ex-Officio Members

10:00 a.m.

State of the Knowledge Workshop- Outcomes and Committee Discussion

Dennis Mangan, NIH
Committee Members

11:00 a.m.

Break

11:15 a.m.

Public Comment

Public

12:15 p.m.

Subcommittee Lunch

Subcommittee Members

1:15 p.m.

Discussion of International Classification of Diseases-Clinical Modification (ICD-CM) concerns

Committee Members

2:15 p.m.

Committee Discussion

Committee Members

3:15 p.m.

Break

3:30 p.m.

Public Comment

Public

4:30 p.m.

Committee Discussion and Plans for Day 2

Committee Members

5:00 p.m.

Adjourn

 

Day Two

9:00 a.m.

Call to Order
Opening Remarks:

Dr. Christopher Snell
Chair, CFSAC

Roll Call, Housekeeping:

Dr. Wanda Jones
Designated Federal Official

9:15 a.m.

Welcome Statement from the Assistant Secretary for Health

Dr. Howard K. Koh

9:30 a.m.

Social Security Administration: Presentation on Disability

John Federline, SSA

10:00 a.m.

ERISA and Insurance Issues for CFS Patients (Tentative)

Department of Labor (TBD)

11:00 a.m.

Break

11:15 a.m.

Committee Discussion

Committee Members

12:00 p.m.

Subcommittee Lunch

Subcommittee Members

1:00 p.m.

Public Comment

Public

2:00 p.m.

Break

2:15 p.m.

Committee Discussion: Finalize Recommendations

Committee Members

4:30 p.m.

Adjourn

Related information

[1] Post: Next meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) (US): http://wp.me/pKrrB-YY

[2] Post: CFS orphaned in the “R” codes in US specific ICD-10-CM: http://wp.me/pKrrB-V4

[3] International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM). Note: The 2011 release of ICD-10-CM is now available and replaces the December 2010 release:
http://www.cdc.gov/nchs/icd/icd10cm.htm

[4] US “Clinical Modification” ICD-10-CM. This article clarifies any confusion between ICD-10, ICD-11 and the forthcoming US Clinical Modification, ICD-10-CM: http://wp.me/pKrrB-Ka

[5] Chronic Fatigue Syndrome Advisory Committee (CFSAC). 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. Minutes of meetings, Recommendations and meeting videocasts:
http://www.hhs.gov/advcomcfs/meetings/index.html

Filed under CFSAC meetings, Clinical Modification, ICD-10, ICD-10-CM, ICD-11, ICD-11 Alpha Draft, ICD-11 Beta Draft, WHO (World Health Organization)

ICD Revision Process Alpha Evaluation Meeting presentations

April 19, 2011 by

ICD Revision Process Alpha Evaluation Meeting documents and PowerPoint slide presentations

Post #71 Shortlink: http://wp.me/pKrrB-10i

The information in this mailing relates only to ICD-11, the forthcoming revision of ICD-10 that is scheduled for completion and pilot implementation in 2014/15. It does not apply to the forthcoming US specific Clinical Modification of ICD-10, known as ICD-10-CM.

ICD Revision Process Alpha Evaluation Meeting

An ICD Revision Process Alpha Evaluation Meeting was held, last week, in Geneva. See this post on DSM-5 and ICD-11 Watch site for more information and commentary: http://wp.me/pKrrB-ZN

The Agenda for the meeting can be read here: ICD11 April 2011 Meeting Agenda Word .docx

Following this meeting, it is anticipated that ICD Revision Steering Group may make a public announcement within the next few weeks of how it intends to proceed in light of the fact that the timeline for transition from the Alpha to Beta drafting phases has slipped.

The meeting Agenda and PowerPoint slides suggest that ICD Revision is working towards making a version of the drafting platform publicly available around 16 May, this year, but that this may be a compromise on previous plans and possibly a “hybrid” between the Alpha and Beta drafting phases.

Earlier timelines had approval by World Health Assembly (WHA) slated for May 2014, with pilot implementation of ICD-11 in March 2014. One presentation slide now suggests approval by WHA in 2015.

It’s unconfirmed, but if this is the case, WHO may have already decided to shift WHA endorsement and dissemination of ICD-11 by 12 months, to 2015. This would mean that DSM-5 would have been put to bed and published two years prior to ICD-11 implementation.

From the meeting Agenda:

“Future Phases:

a. iCAT continued alpha development and evaluation ( 2010-11)

b. iCAT beta phase ( 2012-2015)

c. iCAT continuous maintenance phase ( 2015+)”

In November, last year, the iCAT collaborative authoring platform through which ICD-11 is being drafted was taken out of the public domain. A revised version of the software on which the platform runs is currently sitting on a Standford server, behind a password, accessible only to ICD Revision. This, or a similar version, may be made publicly accessible (or accessible to those who register for access) from mid May.

There has been discussion is earlier ICD Revision documents of a hierarchy of stakeholder input – but there is nothing much on this in the meeting presentations, for which ICD Revision has published only slides – not transcripts.

Coming up on DSM-5 and ICD-11 Watch:

ICD-11 proposals for PVFS, ME and Chronic fatigue syndrome

Until some form of Alpha/Beta transition drafting platform is back in the public domain, it won’t be evident how much further forward the population of content for Chapter 6 Diseases of the nervous system has progressed since last November. As more information becomes available, I will update, and I will be posting a summary of how things stood in the iCAT last November, in Post #72.

ICD Revision Process Alpha Evaluation Meeting presentations

There are five presentations published for this meeting: the following three may be of interest to those following the development of ICD-11:

(The 2007 MS PowerPoint viewer is required to view PowerPoint presentations which have been created in .pptx format. A MS .pptx viewer can be downloaded for free from the Microsoft site.)

Open full PowerPoint Presentation:”The Way Forward Questions Options” [.ppt]: TheWayForwardPP

Selected slides from “The Way Forward Questions Options”

Slide 2

Slide 3

Slide 5

Slide 6

Slide 12

Slide 17

Open full PowerPoint Presentation:”The Way Forward Questions Options” [.pptx]: TheWayForwardPP

——————

Open full PowerPoint Presentation: “Proposal for the ICD Beta Platform, Stanford team” [.ppt]: iCATBetaStanford[1]

Selected slides from “Proposal for the ICD Beta Platform, Stanford team”

Slide 5

Slide 11

Slide 12

Slide 41

Slide 42

Slide 43

Slide 44

Slide 45

Slide 46

Slide 51

Open full PowerPoint Presentation: “Proposal for the ICD Beta Platform, Stanford team” [.ppt]: iCATBetaStanford[1]

——————

Open full Can Celik PowerPoint Presentation: “Public Tooling” [.pptx]: Ppt0000069 CanCelic 

Selected slides from Can Celik’s PowerPoint Presentation: “Public Tooling”

Slide 4

Slide 7

Slide 10

Slide 11

Slide 12

Slide 13

Slide 14

Slide 15

Open full Can Celik PowerPoint Presentation: “Public Tooling” [.pptx]: Ppt0000069 CanCelic 
 

Key documents and references:

1] ICD Revision Process Alpha Evaluation Meeting Agenda and background documents

2] Report, WHO FIC Council conference call, 16 February 2011, PDF format

3] Key document: ICD Revision Project Plan version 2.1 9 July 2010

4] Key document: Content Model Reference Guide version January 2011

5] PVFS, ME, CFS: the ICD-11 Alpha Draft and iCAT Collaborative Authoring Platform (DSM-5 and ICD-11 Watch report with screenshots from the iCAT): http://wp.me/pKrrB-KK

Filed under DSM revision process, iCAT, ICD revision process, ICD-10, ICD-11, ICD-11 Alpha Draft, ICD-11 Beta Draft, ICD-11 consultation, ICD-11 revision docs, WHO (World Health Organization)

ICD Revision Process Alpha Evaluation Meeting 11-14 April: The Way Forward?

April 19, 2011 by

ICD Revision Process Alpha Evaluation Meeting 11 – 14 April 2011: The Way Forward?

Post #70 Shortlink: http://wp.me/pKrrB-ZN

The information in this mailing relates only to ICD-11, the revision of ICD-10 scheduled for completion and pilot implementation in 2014/15. It does not apply to the forthcoming US specific “Clinical Modification” of ICD-10, known as ICD-10-CM.

The Way Forward?

ICD-11 Revision maintains a website on a Google platform where key documents, agendas for iCAMP and workgroup meetings, background documents and presentations can be viewed and downloaded. Minutes or summaries of meetings aren’t usually posted publicly:

ICD-11 Revision: http://sites.google.com/site/icd11revision/home

An ICD Revision Process Alpha Evaluation Meeting was held in Geneva, last week, between 11-14 April, for discussing the status of the revision of ICD-10 and development of ICD-11, for both content and software development, and reviewing the ICD revision “Roadmap” and Timeline.

A copy of the Meeting Agenda can be downloaded from the ICD-11 Revision site here or opened on DSM-5 and ICD-11 Watch site here: ICD11 April 11 Meeting Agenda. There are some interesting comments in the Agenda Appendix on project funding, lack of resources, project management and lines of communication.

There are five PowerPoint presentations available to download from this page.

If you are interested in the ICD Revision process, in general, then I suggest visiting the site and viewing or downloading the following three presentations – these are slides only, with no notes or transcripts.

(The 2007 MS PowerPoint viewer is required to view presentations that have been created in .pptx format. A .pptx viewer can be downloaded free from the Microsoft site.)

.ppt file: The Way Forward

.pptx file: Can Celik’s Presentation: Public Tooling

.pptx file: Stanford’s Presentation: iCAT Beta

These three presentations can also be opened in the next post on DSM-5 and ICD-11 Watch site and selected slides have been posted here:

Post #71: ICD Revision Process Alpha Evaluation Meeting documents and presentations

 

“Community engagement”

In mid 2009, ICD Revision launched a number of platforms as channels of communication with the public and maintains a YouTube Channel, Facebook site, Twitter and blog. The ICD-11 blog has not been updated since October 2009 and queries left on the Facebook site by members of the public may take several months before a response is provided or may receive no response, at all.

The YouTube videos made to accompany various Geneva meetings can also be accessed on the ICD Revision YouTube page of my site. The two most recent videos give an overview of the iCAT drafting process and the extent of the ICD-11 “Content Model” – the 13 parameters through which ICD-11 categories can be described.

 

Visibility of iCAT drafting platforms

Following last week’s ICD Revision Process Alpha Evaluation Meeting, it is anticipated that ICD Revision may make a public announcement, within the next few weeks, clarifying how it intends to proceed in light of the fact that the timeline for the Beta drafting phase is slipping.

The meeting Agenda and PowerPoint slides suggest that ICD Revision is working towards making a version of the drafting platform publicly available around 16 May, this year, but that this may represent a compromise on previous plans and may be a “hybrid” between the Alpha and Beta drafting phases.

From the Agenda:

“Future Phases:

a. iCAT continued alpha development and evaluation ( 2010-11)

b. iCAT beta phase ( 2012-2015)

c. iCAT continuous maintenance phase ( 2015+)”

Earlier timelines had projected endorsement by the World Health Assembly (WHA) and pilot implementation of ICD-11 in the spring of 2014. But one presentation slide suggests approval by WHA in 2015.

It’s unconfirmed, but if the “Milestones” timeline has been revised to accommodate a later release of a Beta drafting phase platform and later publication of a Beta Draft, then WHO may have already decided to shift the pilot implementation date for ICD-11 by 12 months, to 2015.

That would mean that by the time ICD-11 is ready for dissemination, the American Psychiatric Association’s DSM-5 would have already been put to bed and out in print two years prior to ICD-11 implementation.

It is intended that for ICD-11, all three volumes will be electronically published and capable of continuous updating in response to scientific developments (unlike ICD-10 where there are annual updates); there will also be electronic translations and print editions. The three volumes of ICD-11 are intended to be integrable with each other and also with some other classification systems. 

The drafting platforms are based on Web 2.0 applications and it is proposed that there will be stakeholder and end user participation in the Beta drafting phase.

The IT work and software development for the various alpha and beta drafting platforms and final product platforms is enormously complex; there is also the potential for far more textual content in ICD-11 than there was in ICD-10 and overall, this revision project represents a huge undertaking by an under-resourced organization.

 

The ICD-11 Alpha/Beta drafting process

Topic Advisory Group (TAG) Managing Editors overseeing the revision of the various chapters of ICD-10 have responsibility for recruiting external experts, via networking. The function of the external experts is to peer review proposals being made by TAG members or submitted by external professional bodies and institutions and to review or assist with the generation of textual content.

[In late 2009, I approached the WHO’s Dr Robert Jakob to enquire whether and at what stage the names of external peer reviewers would be identified in the drafting platforms, as visible to the public. I also asked whether the reviewing of proposals as they progressed through the Workflow review system would be a transparent process that could be monitored by the public. Neither query produced a response from Dr Jakob.]

So there are many lines of communication to be maintained between WHO classification experts, IT consultants and technicians, Revision Steering Group members, TAG Managing Editors, TAG members and external experts. There is an ICD-11 Collaborative Authoring Workflow chart here: workflow-2.

At the Beta drafting stage, the proposal is that TAG Managing Editors will continue to recruit external peer reviewers to assist workgoups with reviewing of categories, proposals and generation of content, but that versions of the Beta drafting platform would be opened up to the public for viewing, and interested stakeholders would be able to register for limited input and interaction.

Stakeholders (or preferably, communities of stakeholders) would not have editing rights, per se, but the proposal is that they would comment on proposals, “score” proposals and make evidence-based suggestions which the TAG groups would then consider for approval, which would then be incorporated into the draft or rejected.  There has also been discussion of a “hierarchy” of levels of input according to professional status of stakeholders. How ICD Revision plans to verify the credentials of professionals isn’t clear, nor is it defined what would consitute a stakeholder “community”.

No static Beta Draft for public review and comment

Rather than release a static Beta draft for professional and public scrutiny in a feedback exercise for a pre-determined review period (as DSM-5 has already done and is scheduled to do again in August-September), the proposal appears to be for longer term feedback during an alpha/beta transition drafting phase on dynamic content that would be continuously updated, for example, on a four weekly cycle, to reflect the progress being made by the various Topic Advisory Groups in entering proposals for changes and populatation of textual content, and in response to external input.

So managing editors and members of the Topic Advisory Groups (mostly international clinicians and researchers juggling this work on top of their “day jobs”) are faced with maintaining lines of communication, largely via electronic means, between workgroup chairs, fellow workgroup members, external peer reviewers and WHO classification experts whilst also considering input from professional bodies, and working in the background on the drafting platform, while stakeholders are commenting and feeding suggestions into the process via the public versions of the drafting platforms. 

[Some organizations and professional bodies have been compiling and submitting proposals via an ICD Revision Proposal Form, since late 2009. There is no publicly available list of which institutions and bodies have been invited to submit proposals, which have responded, or where their submissions for changes to ICD-10 can be scrutinised, but copies of these submissions occasionally turn up online, having been published in the organs of these organizations.]

Selected slides from “Proposal for the ICD Beta Platform, Stanford team”:

Slide 11

Slide 12

Slide 42

Slide 43

Slide 45

Slide 46

 

“…who will do all this work?”

Presentations and video clips of the WHO’s Dr. Bedirhan Üstün suggest a man buzzed up on information and internet technology: “cloud sourcing”, portals, public commenting and “scoring” of proposals, wikis, blogs,  internal and public “user communities”, drawing in the involvement of “Wikipedians” and other existing “editing communities” (one questions whether Dr Üstün has any experience of how Wikipedia functions and the problems inherent with some Wikipedia admins and editors, particularly in relation to editing of controversial scientific and medical areas), message boards, Facebook integration, “community engagement”…

But as the closing slide of one of last week’s presentations ruefully comments, “And just a small detail: who will do all this work?” [6]

ICD Revision and its IT and informatics advisors seem eager to use these internet applications because they exist, without having given due consideration to whether the WHO can fund, manage and sustain this level of public participation and interaction or whether this is the best way to approach the revision of the ICD.

How does ICD Revision intend to finance and recruit the personnel needed to manage the opening up of the drafting process to multiple platforms for stakeholder participation, given WHO’s limited resources when already, no-one can evidently be spared to even keep the ICD-11 blog updated or to respond to queries that members of the public have posted on ICD Revision’s existing public platforms and where Topic Advisory Group Chairs approached for brief clarifications are not always providing a response nine months down the line?

Who is going to pull this most ambitious project back down to earth?

Insufficient funding allocated and no Project Manager

From the Appendix to the April meeting Agenda:

“TAGs were supposed to be self-financed.  The TAG chair was supposed to have funding to carry out their revision work.”

“As this is a core WHO activity, we should have regular budget funds for this project.  The scale of this project is too big not to have funding for a project manager.”

“Additionally, ALL relevant WHO departments should have designated some financial and some human resources to this project as part of the collaborative effort.”

“…communication between the TAGs is growing, and it is beginning to become overwhelming in addition to clinical responsibilities.”

 

ICD-11 proposals for PVFS, ME and Chronic fatigue syndrome

Until some form of Alpha/Beta transition drafting platform is back in the public domain, it won’t be evident how much further forward the population of content for Chapter 6 Diseases of the nervous system has progressed since last November. As more information becomes available, I will update, and I will be posting a summary of how things stood in the iCAT last November in Post #72.

The meeting Agenda, selected slides and three of the PowerPoint presentations can be viewed/opened from Post #71, on DSM-5 and ICD-11 Watch site, here:

ICD Revision Process Alpha Evaluation Meeting documents and presentations

 

Key documents and related posts:

1] ICD Revision Process Alpha Evaluation Meeting Agenda and background documents

2] Report, WHO FIC Council conference call, 16 February 2011, PDF format

3] Key document: ICD Revision Project Plan version 2.1 9 July 2010

4] Key document: Content Model Reference Guide version January 2011

5] PVFS, ME, CFS: the ICD-11 Alpha Draft and iCAT Collaborative Authoring Platform (DSM-5 and ICD-11 Watch report with screenshots from the iCAT): http://wp.me/pKrrB-KK

6] Closing remarks, PowerPoint presentation: “Proposal for the ICD Beta Platform”, Stanford team, 12.04.11, WHO, Geneva.

Filed under iCAT, ICD revision process, ICD-10, ICD-10-CM, ICD-11, ICD-11 Alpha Draft, ICD-11 Beta Draft, ICD-11 consultation, ICD-11 in the media, ICD-11 revision docs, WHO (World Health Organization)

ICD-11 Training videos, transcripts and Key Revision documentation

March 9, 2011 by

New ICD-11 Training videos, video transcripts and Key Revision documentation

Post #65 Shortlink: http://wp.me/pKrrB-YI

The information in this post relates only to the development of ICD-11. It does not relate to the development of the forthcoming US specific “Clinical Modification” of ICD-10, known as “ICD-10-CM”.

A WHO ICD Revision meeting was held in Ankara, Turkey, at the end of February. The ICD Revision Paediatrics Topic Advisory Group (TAG) met to discuss “Diagnostic issues on Children and Youth”.

A number of meeting documents and videos have been posted on the ICD Revision site which are general background documents to the ICD-11 development process and not specific to the work of TAG Paediatrics or the focus of the Ankara meeting.

The two training videos (“ICD-11 Content Model Training” and “iCAT Training”) are now also available on YouTube. The training videos are aimed at those currently involved with the ICD-11 Revision process as WHO staff, IT technicians and the chairs, managing editors, members and external reviewers of the ICD-11 Topic Advisory Groups but will be of general interest to those following the development of ICD-11.

Content Model

One of the main differences between ICD-10 and ICD-11 will be the amount of textual content associated with ICD categories. In ICD-10, there is no textual content, definitions or descriptions for any of the three terms, PVFS, ME, CFS, and the relationship between these terms is not specified within ICD-10.

But the ICD-11 Content Model contains 13 parameters that may be used to describe ICD entities and these parameters are discussed in the training video. So if you are not familiar with the extent of the potential for textual content describing categories within ICD-11, this video sets this out. In the References is the URL for the latest version of the “Content Model Reference Guide” document.

The 13 Parameters through which an ICD-11 category can be described are:

1. ICD Entity Title; 2. Classification Properties; 3. Textual Definition(s); 4. Terms; 5. Body Structure Description; 6. Temporal Properties; 7. Severity Properties; 8. Manifestation Properties; 9. Causal Properties; 10. Functioning Properties; 11. Specific Condition Properties; 12. Treatment Properties; 13. Diagnostic Criteria.

iCAT

The second video describes the operation of the iCAT collaborative drafting platform through which the alpha and beta drafts are being developed. The platform is currently behind a password and accessible only to ICD Revision personnel who have editing rights, but it is understood that after the Beta Drafting stage has been reached, the iCAT should be accessible to stakeholders for limited input.

The iCAT had been in the public domain up until early November for public viewing only and I have some relevant screenshots of the population of content as it stood in the iCAT, at that point, here:

PVFS, ME, CFS: the ICD-11 Alpha Draft and iCAT Collaborative Authoring Platform: http://wp.me/pKrrB-KK

ICD-11 Training videos:

1] Content Model Training Video, YouTube:

Duration: 20: 38 mins

An MS Word document of the Content Model Training Video Script can be downloaded here:

Transcript of Content Model Training Video

 

2] iCAT Training Video, YouTube:

Duration: 29:12 mins

An MS Word document of the iCAT Training Video Script can be downloaded here:

Transcript of iCAT Training Video

References:

1] Ankara Paediatrics meeting 28 February-1 March 2011
Background documents page and Agenda

2] Key document: Content Model Reference Guide version January 2011

3] Key document: ICD Revision Project Plan version 2.1 9 July 2010

4] iCAT Drafting Platform browser
(Access and editing rights currently restricted to WHO and ICD Revision, TAG members and IT personnel):

Filed under iCAT, ICD on YouTube, ICD revision process, ICD-10, ICD-10-CM, ICD-11, ICD-11 Alpha Draft, ICD-11 Beta Draft, ICD-11 consultation, ICD-11 revision docs, Somatic Symptom Disorder, Somatoform Disorders, WHO (World Health Organization)

Ian Swales, MP amends his report on gov policy on CFS and ME (Three Parliamentary errors)

March 3, 2011 by

Ian Swales, MP amends his report on government policy on CFS and ME (Three Parliamentary errors)

Post #63 Shortlink: http://wp.me/pKrrB-Y7

On 2 February 2011, Ian Swales (Lib Dem, Redcar) addressed a Parliamentary Adjournment Debate on ME. During that debate, the Health Minister, Paul Burstow, had stated that the World Health Organisation (WHO) uses the composite term CFS/ME for this condition.

This was incorrect. The WHO does not use the composite terms “CFS/ME” or “ME/CFS”.

In a Parliamentary Written Answer to Mr Swales, dated 16 February, the Health Minister corrected his error [1].

Mr Burstow had clarified:

“…During the Westminster Hall debate, on 4 February 2011, I said that the World Health Organisation uses the composite term CFS/ME for this condition*. This was incorrect.

“The World Health Organisation classes benign myalgic encephalomyelitis and post viral fatigue syndrome under the same classification G93.3 ‘diseases of the nervous system’; subheading ‘other disorders of the brain’.

“The report of the CFS/ME Working Group to the Chief Medical Officer, in January in 2002, suggested that the composite term CFS/ME be used as an umbrella term for this condition, or spectrum of disease. This term is also used by the National Institute for Health and Clinical Excellence for their clinical guidelines.

“We do, however, intend to seek further advice on our classification and will update the hon. Member in due course.”

[Note that although Health Minister, Paul Burstow, gave the date of Ian Swales’ Adjournment Debate as “4 February” in his Written Answer of 16 February, the Debate took place on 2 February 2011.]

On 17 February, Mr Swales published a report on his website which went out under the title “Swales wins battle with Government on ME”. This report had claimed:

“Ian Swales MP’s fight for better treatment of myalgic encephalomyelitis (ME) continues as he succeeds in getting the Government to recognise ME and Chronic Fatigue Syndrome (CFS) as different illnesses.”

But Mr Swales had misinterpreted the content of the Written Answer he had received from the Health Minister.

 

This has caused much confusion amongst ME and CFS patients.

Advocates have raised this misunderstanding with Mr Swales and with his Parliamentary Researcher.

Today, an amended report has been published on Mr Swales’ website under the same URL and date, but with a new title – this time it is called:

“Swales corrects Minister on World Health Organisation definition of ME”

I am appending both versions.

To recap, because this is important, and because there is a further error:

Paul Burstow, Health Minister, incorrectly stated on 2 February, during an Adjournment Debate, that the WHO uses the composite term CFS/ME for this condition. That error was corrected by Mr Burstow in his Written Answer of 17 February.

Ian Swales, MP, then claimed in a website report that he had succeeded in getting the government to recognise ME and Chronic Fatigue Syndrome (CFS) as different illnesses. This was a misinterpretation of Mr Burstow’s own correction and clarification. Mr Swales’ Parliamentary Office has now amended his report.

The Countess of Mar, meanwhile, tabled a Written Question of her own for which a response was provided on 1 March, by Earl Howe [3].

The Countess of Mar had tabled:

“To ask Her Majesty’s Government, further to the statement by the Minister of State for Health, Paul Burstow, on 2 February (Official Report, Commons, col. 327) that the World Health Organisation (WHO) described myalgic encephalomyelitis (ME) as Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) and that this was the convention followed by the Department, in light of the fact that the WHO International Classification of Diseases 10 lists ME as a neurological disease with post viral fatigue syndrome (PVFS) under G93.3 and CFS as a mental health condition under F48.0 and that the latter specifically excludes PVFS, whether they will adhere to that classification.”

The response received on 1 March, was:

Earl Howe (Parliamentary Under Secretary of State (Quality), Health; Conservative)

“The department will continue to use the composite term chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) for this condition, or spectrum of disease, as suggested by the Chief Medical Officer in his 2002 report. We recognise the condition as neurological in nature.”

But the Countess of Mar’s Written Question also contains an error.

In the International version of ICD-10 (the version used in the UK and over 110 other countries, but not in the US which uses a “Clinical Modification” of ICD-9), CFS is not classified as a mental health condition under F48.0.

Chronic fatigue syndrome is listed in ICD-10 Volume 3: The Alphabetical Index, where it is indexed to G93.3, the same code as Postviral fatigue syndrome.

So in International ICD-10, Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic fatigue syndrome are all three coded or indexed to G93.3 under “G93 Other disorders of brain”, in Chapter VI (6): Diseases of the nervous system.

In International ICD-10, the Mental and behavioural disorders chapter is Chapter V (5). 

http://www.who.int/classifications/apps/icd/icd10online/?gf40.htm+f480

Chapter V (5) Mental and behavioural disorders

Neurotic, stress-related and somatoform disorders are coded between (F40-F48)

Neurasthenia
Fatigue syndrome

are classified under (F40-F48) at F48.0, which specifically Excludes

malaise and fatigue ( R53 )

and

postviral fatigue syndrome ( G93.3 )

So now you know what UK government policy is and that Mr Swales had misled himself.

The forthcoming US specific ICD-10-CM

Perhaps the focus can now return to more pressing issues – like the fact that in the US, a Partial Code Freeze is looming for the forthcoming US specific version of ICD-10, known as “ICD-10-CM”.

Under longstanding proposals, the committees developing ICD-10-CM intend to retain Chronic fatigue syndrome in the R codes, and code it under R53 Malaise and fatigue, at R53.82 Chronic fatigue syndrome (NOS), but propose to code for PVFS and ME in Chapter 6, under G93.3.

The R codes chapter (which will be Chapter 18 in ICD-10-CM) is the chapter for

“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.”

Coding CFS patients under R53.82 will consign them to a dustbin diagnosis: there are no guarantees that clinicians will use the unfamiliar ME code or that insurance companies will reimburse for G93.3. It will make patients more vulnerable to the proposals of the DSM-5 Somatic Symptom Disorders Work Group. It will mean that ICD-10-CM will be out of line with at least four versions of ICD-10, including the Canadian “Clinical Modification”, and also out of line with the forthcoming ICD-11, where all three terms are proposed to be coded in Chapter 6 Diseases of the nervous system.

There are only seven months left before the 1 October Code Freeze and the clock is ticking.

 

Here is the first version of Mr Swales’ website report, followed by his amended version.

Version One:

http://ianswales.com/en/article/2011/455560/swales-wins-battle-with-government-on-me

Swales wins battle with Government on ME

February 17, 2011 3:45 PM

Ian Swales MP’s fight for better treatment of myalgic encephalomyelitis (ME) continues as he succeeds in getting the Government to recognise ME and Chronic Fatigue Syndrome (CFS) as different illnesses.

During Ian’s recent parliamentary debate on ME he argued that the Government needs to distinguish between Chronic Fatigue Syndrome and ME to provide better treatment for the different illnesses.

However, Health Minister Paul Burstow MP responded by saying that the World Health Organisation classifies Chronic Fatigue Syndrome and ME as the same illness.

Following an outcry from the ME community about this statement, Ian challenged the Minister on his definition of CFS/ME. The Minister admitted that the definition he used in the debate was “incorrect”.

Commenting, Ian Swales MP said:

“I am pleased that the Government has now recognised that ME and Chronic Fatigue Syndrome are two different illnesses.

“After the debate I received a lot of correspondence from the ME community about the Government’s definition of CFS/ME, so after doing some more research on the matter I decided it was right to clarify this point with the Minister. I know they will be reassured by this news.

“I hope that approaching ME as a distinct condition will help lead to better, more effective treatment for sufferers through better analysis of their possible different causes and symptoms.”

[Ends]

Version Two:

http://ianswales.com/en/article/2011/455560/swales-wins-battle-with-government-on-me

Swales corrects Minister on World Health Organisation definition of ME

February 17, 2011 3:45 PM

Ian Swales MP’s fight for better treatment of myalgic encephalomyelitis (ME) continues as he succeeds in getting the Government to acknowledge that the World Health Organisation does not use the composite term CFS/ME for the condition.

During Ian’s recent parliamentary debate on ME he argued that the Government needs to distinguish between Chronic Fatigue Syndrome and ME to provide better treatment for the different illnesses.

However, Health Minister Paul Burstow MP responded by saying that the World Health Organisation “uses the composite term CFS/ME for the condition”.

Following an outcry from the ME community about this statement, Ian challenged the Minister on his definition of CFS/ME. The Minister admitted that his statement was “incorrect”.

Commenting, Ian Swales MP said:

“I am pleased that the Minister has acknowledged the error he made in the debate.

“After the debate I received a lot of correspondence from the ME community about the Government’s definition of CFS/ME, so after doing some more research on the matter I decided it was right to clarify this point with the Minister. I know they will be reassured by this news.

“I will continue my campaign to get more effective treatment for sufferers of ME through better analysis of its causes and symptoms.”

[Ends]

The text of the Adjournment Debate can be read here, on Hansard

 
Myalgic Encephalomyelitis
4.13 pm

References:

[1] Written Answer: Paul Burstow to Ian Swales, 16 February 2011, 16 Feb 2011 : Column 864W:
http://www.publications.parliament.uk/pa/cm201011/cmhansrd/cm110216/text/110216w0004.htm

[2] Amended Ian Swales website report:
http://ianswales.com/en/article/2011/455560/swales-wins-battle-with-government-on-me

[3] Written Answer: Earl Howe to The Countess of Mar, 01 March 2011:
http://www.theyworkforyou.com/wrans/?id=2011-03-01a.297.1

Hansard for above:
http://www.publications.parliament.uk/pa/ld201011/ldhansrd/text/110301w0001.htm#11030162000766

[4] Hansard, House of Lords Debate: Myalgic Encephalomyelitis, 22 January 2004:
http://www.publications.parliament.uk/pa/ld200304/ldhansrd/vo040122/text/40122-12.htm

[5] Current codings in ICD-10 for Postviral fatigue syndrome; [Benign] myalgic encephalomyelitis and Chronic fatigue syndrome:
https://dxrevisionwatch.wordpress.com/icd-11-me-cfs/

Filed under Clinical Modification, DSM-5, DSM-5 draft proposals, Functional Somatic Syndrome (FSS), ICD-10, ICD-10-CM, ICD-11, ICD-11 Alpha Draft, WHO (World Health Organization), WHO Collaborating Centre

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