Australian Senate seeks clarifications from ICD Revision

Post #337 Shortlink: http://wp.me/pKrrB-4iV

UK Parliamentary Questions

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

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

You can view those Written Questions and Written Answers here:

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

Written Answer: 07 March 2017, Lord O’Shaughnessy

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

Written Answer: 28 March 2017, Lord O’Shaughnessy

Australian Senate also seeks clarifications

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

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

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

1. When the G93.3 legacy terms were restored to the Beta draft on March 26 they were restored with this caveat:

While the optimal place in the classification is still being identified, the entity has been put back to its original place in ICD.
Team WHO 2017-Mar-26 – 12:46 UTC​

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

Deadline Information for proposals:

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

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

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

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

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

Australian Senate Question and Response

SENATE QUESTION
QUESTION NUMBER: 435

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

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

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

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

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

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

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

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

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

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

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

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

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

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

 

Notes:

This Australian Senate Response would appear to clarify the following:

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

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

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

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

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

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

 

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

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

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

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

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

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

 

Four day commenting window

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

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

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

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

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

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

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

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


Key links

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

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References for intention not to retain Neurasthenia for ICD-11

Post #319 Shortlink: http://wp.me/pKrrB-439

When ICD-10 was completed in 1992, Chapter V Mental and behavioural disorders retained the disorder category term, Neurasthenia, coded at F48.0.

This is how Neurasthenia is listed within ICD-10:

F48.0 Neurasthenia (with Fatigue syndrome as inclusion term).

 

Neurasthenia and ICD-10-CM

The forthcoming U.S. specific ICD-10-CM inherits Neurasthenia in Chapter 5 Mental, Behavioral and Neurodevelopmental disorders (F01–F99). But here, it is coded under F48.8, owing to the different coding arrangement for the F48–F48.9 entities within ICD-10-CM.

This is how Neurasthenia is listed in the ICD-10-CM Tabular List release for FY 2015*

Neurasthenia ICD-10-CM

*Although the FY 2015 ICD-10-CM is now available for public download and viewing, the codes in ICD-10-CM are not currently valid for any purpose or use until implementation date is reached.

 

Neurasthenia and DSM

There was no discrete category for Neurasthenia within DSM-IV or DSM-IV-TR; nor within DSM-5, which published in May 2013.

 

Neurasthenia and ICD-11 and ICD-11-PHC

I reported in 2012 that for ICD-11 and ICD-11-PHC, the intention is not to retain Neurasthenia.

Here are the references:

Creed F, Gureje O. Emerging themes in the revision of the classification of somatoform disorders. Int Rev Psychiatry. 2012 Dec;24(6):556-67. http://www.ncbi.nlm.nih.gov/pubmed/23244611 [Full text behind paywall]

On Page 563 of this review paper, the authors state that a major highlight of the proposals of the ICD-11 Expert Working Group on Somatic Distress and Dissociative Disorders (the S3DWG sub working group) for the revision of the ICD-10 Somatoform disorders is that of subsuming all of the ICD-10 categories of F45.0–F45.9 and F48.0 under a single category with the proposed name of “Bodily distress disorder” (BDD).

For ICD-11-PHC (the abridged version of ICD for use in primary care and low resource settings), it is also the intention not to retain the primary care disorder category F48 Neurasthenia.

Here are the references for the primary care version:

International Psychiatry, Issue 1 Feb 2011, Royal College of Psychiatrists
http://www.rcpsych.ac.uk/pdf/IPv8n1.pdf

Page1: Box 1 The 26 conditions included in ICD10-PHC

F45 Unexplained somatic complaints*
F48 Neurasthenia*

*Not to be included in ICD11-PHC

Neurasthenia Box 1

See also:

Goldberg DP. Comparison between ICD and DSM diagnostic systems for mental disorders.
In: Sorel E, ed. 21st Century Global Mental Health. Jones & Bartlett Learning, 2012:37-53.
Sample Chapter 2: http://samples.jbpub.com/9781449627874/Chapter2.pdf
Publication date: August, 2012: http://www.jblearning.com/catalog/9781449627874/

See Page 51: Table 2.5 The 28 Disorders Proposed for ICD11-PHC

Note: If you compare the list of proposed disorders for the ICD-11 primary care version, as listed in the February 2011 International Psychiatry article (on Page 2, Box 2 The 28 disorders to be field tested for ICD11-PHC), with Table 2.5, above, you will note that some proposed disorder names, disorder groupings and disorder group headings have been revised since the article in International Psychiatry. Prof Goldberg has clarified that the iteration published in the sample book chapter was the more recent of the two, cf:

February 2011 iteration:

Body distress disorders

16 Bodily distress syndrome (new – was unexplained somatic complaints)
17 Health preoccupation (new)
18 Conversion disorder (was dissociative disorder)

 

Sample chapter (2012) iteration:

Body distress disorders

15 Bodily stress syndrome
16 Acute stress reaction
17 Dissociative disorder
18 Self-harm

This list of disorder proposals and groupings may have undergone further revision since publication of 21st Century Global Mental Health. But no progress reports have emerged on behalf of the Primary Care Consultation Group (PCCG) setting out more recent proposals for their “Bodily stress syndrome” construct since the Lam et al (July 2012) paper [1].

The disorder term and construct that is entered into the ICD-11 Beta draft and defined with three severities, is the S3DWG group’s conceptually different, but similarly named construct, Bodily distress disorder (BDD).

The ICD-11 S3DWG group is advising ICD Revision in parallel with the PCCG on a potential replacement for the ICD-10 Somatoform disorders.

It is the case, however, that some professional and consumer stakeholders are unaware that are two groups advising on the revision of the Somatoform disorders, that there have been two sets of proposals presented, or how they differ in conceptualization.

Four revised definition texts were submitted to the Proposals List on behalf of Mental Health TAG for “Bodily distress disorder (BDD)” on January 9–11, which will be the subject of a future post.

 

Further evidence of intention for Neurasthenia and ICD-11

In mid 2012, Neurasthenia was removed from the ICD-11 Beta draft and subsumed (along with the F45.0–F45.9 category terms) by the S3DWG’s new single diagnostic category, “Bodily distress disorder.”

However, a couple of redundant listings for Neurasthenia as an exclusion term remained in the Beta draft as legacy text from ICD-10, under Exclusions to Fatigue (Symptoms and signs chapter) and Generalized anxiety disorder (Mental and behavioural disorders chapter).

The deletion of Neurasthenia as an exclusion term to Fatigue has now been attended to.

The following proposal has been submitted via the Proposals facility on behalf of Mental Health TAG to address the legacy listing that remains under Generalized anxiety disorder and this provides additional and contemporary evidence of intention not to retain Neurasthenia as a disorder term for ICD-11:

Proposals List

Content Enhancement Proposal

Exclusion to Generalized anxiety disorder

neurasthenia

Submitted

Neurasthenia is not recommended for retention as a disorder category in ICD-11. Therefore, this exclusion term is not longer necessary.

–On behalf of Mental Health TAG

Geoffrey Reed 2015-Jan-09 – 10:09 UTC

 

If the concept is not retained in ICD-11, then the concept would be marked as obsolete rather than deleted. Thank you!

M. Meri Robinson Nicol 2015-Jan-26 – 13:14 UTC

 

References

1 Lam TP, Goldberg DP, Dowell AC, Fortes S, Mbatia JK, Minhas FA, Klinkman MS: Proposed new diagnoses of anxious depression and bodily stress syndrome in ICD-11-PHC: an international focus group study. Fam Pract Feb 2013 [Epub ahead of print July 2012]. http://www.ncbi.nlm.nih.gov/pubmed/22843638. Full free text: http://fampra.oxfordjournals.org/content/30/1/76.long

Summary: September 19 ICD-9-CM Coordination and Maintenance Committee Meeting

Summary: September 19 ICD-9-CM Coordination and Maintenance Committee Meeting

Post #205 Shortlink: http://wp.me/pKrrB-2vc  

The September meeting of the ICD-9-CM Coordination and Maintenance Committee, jointly chaired by CMS and CDC, took place on September 19, 2012.

For further information on this public process see the CDC website page:

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

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Meeting Summary document

The meeting Summary document has now been published.  The audio is not yet available.

The Summary document can be downloaded here:

September 19, 2012

Summary (10 pages) [PDF – 59 KB]

http://www.cdc.gov/nchs/data/icd9/2012_September_Summary.pdf

or opened in PDF format here:     Summary September 19 2012

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The Proposals and Agenda document can be downloaded here:

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

ICD-9-CM Coordination and Maintenance Committee Meeting

September 19, 2012

Proposals (74 pages) [PDF – 730 KB]

http://www.cdc.gov/nchs/data/icd9/Topic_packet_for_September_19_2012.pdf

or opened in PDF format here:     Topic packet for September 19 2012

According to the Summary document, the deadline for receipt of public comments on proposals submitted at this meeting is November 16, 2012. If there is any change to this date, I will update.

Comments on proposals presented at the ICD-9-CM Coordination and Maintenance Committee meeting should be sent to the following email address: nchsicd9CM@cdc.gov. See Page One of the Summary document for important information on submission of public comment.

Extract, Summary document

Chronic fatigue syndrome

Andreas Kogelnik, MD, representing the Coalition 4 ME/CFS, was available via telephone to address questions and clinical concerns.

Lori Chapo-Kroger, representing the Coalition 4 ME/CFS, expressed that many nations, and the World Health Organization, put CFS at G93 in ICD-10, and that this would include everyone but the U.S.

Mary Dimmock, representing the Coalition 4 ME/CFS, questioned why the change must wait until after 2014 when they feel that this is an error in the classification right now (and has been since 2001).

Dr. Kogelnik indicated that the term myalgic encephalomyelitis is used in Europe while the U.S. continues to use the term chronic fatigue syndrome, and that the Coalition 4 ME/CFS considers these two conditions (CFS and ME) to be the same. That is why they want both terms included in the same code.

Nelly Leon-Chisen, AHA, noted support for a need for a code for chronic fatigue syndrome distinct from chronic fatigue, unspecified. She indicated also that with the cause being unknown it is better that the classification not be locked into placing CFS as a viral code. Also, if there is no consensus for ME and CFS being the same then it makes sense to keep them as two separate codes. If research later develops that says they are the same then the data can be aggregated together. However, if the research does not show this, then you don’t have them lumped into one code that does not allow you to separate out one from the other.

Sue Bowman, AHIMA, questioned counting all CFS as following a virus infection. She expressed a need for clinical consensus on this condition. Also, she stated that she did not see a rationale for an early change (before 2014).

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Note: Dx Revision Watch has no connection with the Coalition 4 ME/CFS or with the development of any proposals submitted by this organization. The views and opinions expressed in Coalition 4 ME/CFS submissions to ICD-9-CM  Coordination and Maintenance Committee meetings represent the views of the Coalition 4 ME/CFS and its representatives and not the views of Dx Revision Watch.

All enquiries about proposals submitted to CMS/CDC on behalf of the Coalition 4 ME/CFS should be addressed directly to the Coalition 4 ME/CFS.

Note also that the proposal from the Coalition 4 ME/CFS (Option 1) and the alternative proposal presented by CMS/CDC (Option 2) at the September meeting are set out in accordance with the requirements of the ICD-9-CM Coordination and Maintenance Committee for the submission of proposals. 

For Options 1 and Option 2 see post Proposals: September 19 ICD-9-CM Coordination and Maintenance Committee Meeting or Proposals document Topic packet for September 19 2012

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Related posts:

Proposals: September 19 ICD-9-CM Coordination and Maintenance Committee Meeting

Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative

Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting Summary document (CFS coding)

Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011 (Coding of CFS in ICD-10-CM)

Proposals: September 19 ICD-9-CM Coordination and Maintenance Committee Meeting

Proposals: September 19 ICD-9-CM Coordination and Maintenance Committee Meeting

Post #204 Shortlink: http://wp.me/pKrrB-2uL

The next meeting of the ICD-9-CM Coordination and Maintenance Committee, which is jointly chaired by CMS and CDC, takes place on September 19, 2012. 

There is a very full agenda for this meeting. The meeting materials Proposals document has now been published.

For further information on this public process see the CDC website page:

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

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The Proposals and Agenda document can be downloaded here:

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

ICD-9-CM Coordination and Maintenance Committee Meeting

September 19, 2012

Proposals (74 pgs) [PDF – 730 KB]

http://www.cdc.gov/nchs/data/icd9/Topic_packet_for_September_19_2012.pdf

or opened in PDF format here:      Topic packet for September 19 2012

Note: I have no connection with the Coalition 4 ME/CFS or with the development of any proposals submitted by this organization. All enquiries about the proposal submitted to CMS/CDC on behalf of the Coalition 4 ME/CFS should be addressed directly to the Coalition 4 ME/CFS.

Note also that the proposal from the Coalition 4 ME/CFS and the alternative proposal from CMS/CDC are set out in accordance with the requirements of the ICD-9-CM C & M Committee for the submission of proposals.

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Coding of CFS in the forthcoming US specific ICD-10-CM

At the ICD-9-CM Coordination and Maintenance Committee’s September 14, 2011 meeting, a presentation had been made on behalf of the Coalition 4 ME/CFS in relation to the formal submission of a proposal.

The proposal requested that consideration be given to moving the classification of Chronic fatigue syndrome from its current proposed location within the ICD-10-CM R code chapter (Chapter 18: Symptoms and signs) to the G code chapter (Chapter 6: Diseases of the nervous system).

This would bring the chapter location of Chronic fatigue syndrome in ICD-10-CM in line with the international version of ICD-10, the Canadian ICD-10-CA and proposals for the forthcoming ICD-11.

No NCHS decision reached in response to the September 2011 proposals and the public comments received in respect of these proposals was conveyed following closure of the public comment period, last November.

However, further discussion of Chronic fatigue syndrome and two additional proposals are tabled on the agenda for discussion at the September 19, meeting, tomorrow.

I am appending the relevant extract from the Diagnosis Agenda and Proposals document which was published on the CDC  website overnight. An official audio and a Summary of the meeting should be available in due course on the CDC website. I will update with these when available.

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Extract Topic packet for September 19 2012 (Page 46)

[…]

Chronic fatigue syndrome

Andreas Kogelnik, M.D., Coalition 4 ME/CFS

Chronic fatigue syndrome

A proposal, submitted by the Coalition 4 ME/CFS, to modify codes for chronic fatigue syndrome (CFS) was presented and discussed at the September 2011 ICD Coordination and Maintenance Committee meeting. The National Center for Health Statistics also presented an alternative proposal, Option 2. There were many comments from the audience, and there was general support for the NCHS-proposed Option 2, moving CFS from Chapter 18, Symptoms, signs and abnormal clinical findings, not elsewhere classified, to Chapter 6, Diseases of the Nervous System but retaining separate codes for CFS and myalgic encephalomyelitis (ME). The rationale for retaining separate codes included agreement on the importance of being able to extract data on the two conditions separately or combine, as needed. It was also noted that term ME is not seen in medical record documentation. Written comments received on this issue were inconclusive. There was not agreement that the two conditions are the same. While some comments were from private citizens, others were from advocacy organizations and associations that represent health care providers and other large constituencies that use the classification. The public comment period following the meeting is not meant as a poll or survey. Analysis of public comment focused on the substance of the comments; whether there was a clear scientific consensus regarding the etiology and manifestations of the condition; and an understanding of the classification, its structure and conventions, and its uses by the health care industry.

As noted in the information from the September 2011 presentation, the cause or causes of CFS remain unknown, despite a vigorous search. While a single cause for CFS may yet be identified, another possibility is that CFS represents a spectrum of illnesses resulting from multiple possible pathways. Conditions that have been proposed to trigger the development of CFS include infections, trauma, immune dysfunction, stress, and exposure to toxins. Research in this area is ongoing.

There are several case definitions currently in use, some separating CFS from ME, and others merging the two conditions. The most widely used are the 1994 case definition (http://www.cdc.gov/cfs/case-definition/index.html ), the Canadian and the Oxford definitions. A new case definition for ME was published in the 2011 international consensus criteria that emphasized recent research and clinical experience that strongly point to widespread inflammation and multisystem symptoms and neuropathology. This new definition, which considers ME and CFS as synonymous terms, however, has not been widely vetted by the health care community at large. While there is no consensus on one case definition, there is consensus that this is a serious and complex syndrome, and it is likely that there are multiple subgroups. It has been noted that some providers use the terms interchangeably while others consider one condition a subgroup of the other. There is also some overlap with fibromyalgia and CFS/ME could be considered one of the multiple chronic overlapping pain conditions.

References

1. Fukuda et al. Ann Intern Med (1994) 121:953-959
(http://www.cdc.gov/cfs/case-definition/1994.html )
2. Holmes et al. Ann Intern Med (1988) 108:387-389.
3. Sharpe et al. J Roy Soc Med (1991) 84:118-121
4. Carruthers et al. J CFS (2003) 11:7-97
5. Carruthers et al.. J Intern Med (2011) 270: 327-38.

The Coalition 4 ME/CFS has stated that they do not support Option 2 proposed in September 2011 and have submitted a revised proposal. A revised Option 2 is also being proposed, consistent with comments received supporting Option 2 as noted above. The Coalition is also requesting that their proposal be considered for implementation prior to October 1, 2014 even though the condition is not a new disease and therefore does not meet the criteria for implementation during the partial freeze.

Based on the above, the following proposals for consideration are:

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For comparison, the proposal that had been presented by CDC at the September 2011 meeting in counterpoint to an earlier proposal presented by the Coalition 4 ME/CFS at that same meeting was this:

 

 

Instead of Title term G93.3 Postviral and other chronic fatigue syndromes (CDC Option 2, September 2011)

CDC suggests retaining the Title term G93.3 Postviral fatigue syndrome (CDC Option 2, September 2012).

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Instead of Child category G93.31 Postviral fatigue syndrome, Benign myalgic encephalomyelitis

CDC is now suggesting two categories for Postviral fatigue syndrome, thus:

G93.30 Postviral fatigue syndrome, unspecified, Postviral fatigue syndrome NOS (not otherwise specified)

with a discrete Child category G93.31 Myalgic encephalomyelitis, Benign myalgic encephalomyelitis.

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No suggested change to the September 2011 CDC Option 2 suggestion for Child categories:

G93.32 Chronic fatigue syndrome, Chronic fatigue syndrome NOS.

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Related posts:

Coding CFS in ICD-10-CM: CFSAC and the Coalition4ME/CFS initiative

Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting Summary document (CFS coding)

Extracts: ICD-9-CM Coordination and Maintenance Committee Meeting September 14, 2011 (Coding of CFS in ICD-10-CM)

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