Discussion of proposals for coding of CFS for ICD-10-CM at May 10-11, 2011 CFSAC meeting

Discussion of proposals for coding of CFS for ICD-10-CM at May 10-11, 2011 CFSAC meeting

Shortlink: http://wp.me/pKrrB-1gv

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. Nancy C. Lee, Deputy Assistant Secretary for Health – Women’s Health, is the Designated Federal Officer for CFSAC.

The Spring meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) was held on May 10-11, 2011 in Room 800, Hubert H. Humphrey Building, 200 Independence Ave, S.W., Washington, D.C.

The Fall meeting has been announced for Tuesday, November 8 and Wednesday, November 9 but will be located in a different venue. The November meeting will be hosted at the Holiday Inn Capitol, Columbia Room, 550 C Street, SW., Washington, D.C. See next post for Federal Notice. At the time of publication, no agenda for the Fall meeting has been issued.

Minutes Day One and Two Spring 2011 meeting from this page: Minutes May 10-11 CFSAC

Presentations Day One and Two: Presentations and Meeting Materials

Public and Written Testimonies here: Public Testimonies

Recommendations approved from Spring meeting: Recommendations CFSAC May 10-11

Videocasts of the entire two day proceedings can be viewed here: Videocasts Day One and Two

Current Roster     CFSAC Charter

Discussion of ICD-10-CM and DSM-5 at the May CFSAC meeting

Of particular interest to the scope of this site was the Agenda item on Day One at 1:15 p.m.

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

Dr Wanda Jones, outgoing Designated Federal Officer for CFSAC, had invited a representative from the National Center for Health Statistics to attend the meeting, though no-one had been available for that date.

Instead, Dr Jones presented Committee members with a four page document ICD-related questions from CFSAC for May 2011 meeting as background information.

The document, which can be downloaded in PDF format here, set out responses to the following questions:

What are the key steps in development of the ICD-10-CM?
How does the ICD-CM (whatever version, -9, -10, etc.) align with past and current versions of the -CM and with the WHO’s current and past versions?
How is the ICD-CM used in policy-related decision making?
What difference does coding designation make? How do we get providers to use a particular code–is it an issue of education, of outreach, or what? If codes related to CFS are in several different places, doesn’t that affect the count? And finally, if the codes change, do we lose the numbers from the prior coding systems?
How does ICD coding relate to DSM coding (or does it)?
Partial List of Organizations Consulted and/or Reviewing ICD-10-CM During Development and Ongoing Maintenance of ICD-10-CM

CFSAC Recommendations – May 10-11, 2011

Following a 45 minute discussion of the forthcoming partial code freeze, the implications for CFS and ME patients of current proposals for ICD-10-CM and in the context of draft proposals by the DSM-5 Work Group for “Somatic Symptoms Disorders”, a new Recommendation was proposed by Dr Lenny Jason, seconded by Dr Nancy Klimas, and voted unanimously in favour of by the Committee.

The specific recommendation articulated by the Committee in respect of the agenda item above was:

1. CFSAC rejects current proposals to code CFS in Chapter 18 of ICD-10-CM under R53.82: Chronic fatigue, unspecified > Chronic fatigue syndrome NOS. CFSAC continues to recommend that CFS should be classified in ICD-10-CM in Chapter 6 under “diseases of the nervous system” at G93.3, in line with ICD-10 and ICD-10-CA (the Canadian Clinical Modification), and in accordance with the Committee’s recommendations of August 2005. CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in US disease classification systems. (Note: no disease classification system under HHS’ control proposes to move or to include CFS in or among psychiatric conditions.)

Information on the ICD-9-CM Coordination and Maintenance Committee September 2011 meeting referred to by Dr Jones, in the Minutes, can be found on this page.

Information of the International Classification of Diseases, Tenth Revision, Clinical Modification (ICD-10-CM) draft due for implementation in October 2013 can be found on this page.

Video of this section of the meeting can be viewed here at Videocast Day One at 4hrs 27 mins in from start of broadcast.

I should like to thank Dr Lenny Jason, whose term as a CFSAC Committee member ends following the November meeting, for informing the Committee around current proposals for the forthcoming ICD-10-CM, on the classification of PVFS, ME and CFS in ICD-10 and on the development of ICD-11 and for also raising with the Committee concerns around DSM-5, an issue that had not previously been discussed in any depth at a CFSAC meeting.

Extract (Pages 26-29) Minutes May 10-11 CFSAC

DISCUSSION OF INTERNATIONAL CLASSIFICATION OF DISEASES – CLINICAL MODIFICATION (ICD-CM) CONCERNS

Dr. Christopher Snell

Brought the meeting to order. Noted they would have a discussion of the ICD-related questions and the proposed reclassification of chronic fatigue syndrome.

Advised there was a page in the members’ notebooks tabbed after the State of the Knowledge summary which noted key steps in the development of the ICD 10 CM, so a clinical modification of the World Health Organization’s (WHO) ICD 10. It would replace ICD 9.

Stated his understanding of the issues:

o Disconnect between the way the U.S. uses the classification and the rest of the world.
o The way CFS is classified under the ICD system has implications for both reporting of incidents, morbidity and mortality.
o Used by outside agencies to categorize the illness for purposes of inclusion or exclusion. Opened the floor for discussion.

Dr. Wanda Jones

Clarified that the committee requested that the National Center for Health Statistics have someone to talk to them about the international classification of diseases, about the process, about how the U.S. adapts the WHO index, ( the ICD) for use and about opportunities for dialogue.

Noted that a meeting was set a year ago for May 10 and 11 in Baltimore that engaged resources of CMS, parts of the federal government focused on health IT and the entire ICD team from the National Center for Health Statistics (NCHS).

Noted that as a result no one was available for the CFSAC meeting.

Page 27 of 41

In lieu of their attendance, she developed some questions that the NCHS, ICD team responded to.

Tried to clarify the questions so they would have a good understanding of the key processes and the key inflection points differentiating the WHO process from the U.S. ICD-CM, the clinical modification process.

Raised additional questions regarding how alignment from prior versions is maintained and how ICD coding is used in decision-making.

Noted also the relationship between the coding and the diagnostic and statistical manual (DSM). Stated that the information was provided by the NCHS and is meant to generate discussion.

Stated that the ICD-CM process is a public process with regularly scheduled public meetings. Noted that there is an opportunity to comment as part of that process and to engage.

Confirmed that the NCHS stated that there has been no public presence from the CFS community at the meetings.

Noted that this was the process for people interested in CFS coding to become involved. Confirmed that there was a lock procedure that is soon to be executed for the ICD 10 CM.

Noted it had been in development for a decade and the United States’ move to electronic records means it has to temporarily lock the codes. The electronic health records software would not be ready if they keep changing them.

Noted that information about coding changes would continue to be collected, taken under advisement and the NCHS would continue the process of evaluating.

Stated that once it is in public use then that lock will release and there would be an opportunity on a periodic basis for updating.

Dr. Leonard Jason

Stated that the committees are developing ICD 10 CM and it intends to retain CFS in R codes (R53.82) and this means that the symptoms, signs, abnormal results of clinical or other investigative procedures are ill-defined conditions.

Stated that R-codes means it’s an ill-defined condition regarding which no diagnosis is classifiable elsewhere. Explained that if it cannot be diagnosed elsewhere in ICD 10 it goes into a R-code.

The intention in ICD 11 is to put CFS with two other conditions (post viral fatigue syndrome and benign myalgic encephalomyalitus) under a G-code, being G93.3 or diseases of the nervous system. Noted that coding CFS under the R-code in the proposed ICD 10 CM would place it out of line with the International ICD 10 used in over 100 countries.

Discussed the problems and implications of the U.S. coding of CFS as compared with how other countries are coding it.

Page 28 of 41

It would exclude it from the R53 malaise and fatigue codes, which would imply that CFS does not have a viral etiology.

Brought forward a motion to be considered:

CFSAC rejects current proposals to code CFS in Chapter 18 of ICD 10 CM under R53.82 chronic fatigue syndrome unspecified, chronic fatigue syndrome NOS (not otherwise specified). CFSAC continues to recommend that CFS should be classified in the ICD 10 CM in Chapter 6 under diseases of the nervous system at G93.3 in line with international ICD 10 in ICD 10 CA which is the Canadian clinical modification and in accordance with the committee’s recommendation which we made in August of 2005. CFSAC considers CFS to be a multi-system disease and rejects any proposals to classify CFS as a psychiatric condition in U.S. disease classification systems.

Noted that ME and CFS patients could be potentially vulnerable to the current DSM 5 proposals because those proposals are highly subjective and difficult to quantify.

Noted that retaining the CFS in the R-codes in the IDC 10 CM differentiates the U.S. from other countries but it renders CFS and ME patients more vulnerable to some of the DSM 5 proposals, notably chronic complex symptom disorder [sic].  [Ed: Complex Somatic Symptom Disorder]

Dr. Klimas asked for clarification, and Dr. Jason said that in 2013 they would move from DSM 4 to DSM 5. As it stands they would be collapsing somatization disorder, undifferentiated somatoform disorder, hypochondriasis and some presentations of panic disorder [sic] [Ed: pain disorder]  into complex somatic symptom disorder. Dr. Klimas clarified that his concern was that the CFS ICD 9 codes would put the non post viral patients into this somatoform cluster. Dr. Jason indicated that this was so.

Dr. Klimas seconded the motion. Mr. Krafchick agreed and stated that the ramifications of the classification would be disastrous for patients, because it would limit disability payments to two years. Dr. Jones clarified that for now the clock was ticking, however once the codes were released, they could be revised, it’s just the implementation of the electronic system which is causing it to be locked at a particular point in time. While CFSAC has shared concerns with NCHS, there is an official process for engaging with them on their discussions regarding the codes. The US was interested in morbidity, in case claims. It is important that providers know how to best categorize things, and provide guidance on which codes to consider based on the science for the disease being evaluated.

Mr. Krafchick stated that the issue was that the criteria for the codes was etiology/trigger based. Dr. Jones clarified that it would still remain in the clinician’s judgment, however if they could not identify where the trajectory developed toward CFS, then it would wind up in the R codes. Dr. Jones clarified also that the NCHS does not view the R category as a somatoform disorder. Mr. Krafchick and Dr. Snell indicated they understood this but it would still represent vulnerability for patients when classifying.

Dr. Jason restated his recommendation.

Page 29 of 41

Dr. Marshall stated his concern that there was an attendant risk with this, but that they were between a rock and a hard place. He agreed CFS/ME being classified as a somatoform disorder was inappropriate, but at the same time that the recommendation says it’s a complex multi-system disease, it categorizes it within a single nervous system disease silo. This might affect future research funding opportunities with people saying they don’t fund neurological research. He expressed the view that they should advocate for classification in a multi-system disease category rather than putting it in a nervous system disease category for future, though this category did not exist now. It would be a good thing for patients short term, but it could be a long term risk.

Dr. Snell said that given the amount of current funding, this wasn’t a risk. Dr. Marshall said that using reverse translational research as had been advocated during the meeting might increase the role of this categorization, and could be restrictive in funding.

Dr. Jones asked whether the recommendation being put forward was the same as the May 2010 recommendation, and

Dr. Jason said that his was dramatically different. Mr. Krafchick underscored how the insurance companies use these ICD codes. If it was classified in something that could be psychiatric it will be psychiatric, so they can deny coverage.

Dr. Levine asked about co-morbid disorders and how these are weighted. Dr. Jones responded that she did not think that there was a weighting. It would get listed like a death certificate, a cause of death and then a secondary, sometimes a third. She stated it was the judgment of the clinician how it was listed.

Dr. Klimas expressed the view that coding was also problematic because clinicians code to get paid. There already exists a bias against coding CFS as CFS because the codes could not be used for billing. She stated that they would make a conscious decision not to code CFS as CFS. She indicated that neurology was a fine place for it to be categorized, and at least this would assist people who may be looking for patient data, as it wouldn’t be ignored.

Dr. Snell asked for a vote of all those in favor regarding Dr. Jason’s motion. The motion passed unanimously.

Dr. Jones noted that she would share this recommendation with the NCHS but repeated that unless someone moved forward to intervene in the official processes in the public record it may not move forward or have an effect.

Dr. Jones noted that the next ICD meeting is September 14 – 15, 2011 with public comments due July 15. Noted this will be put on the CFSAC website. She noted she would check the rules to see if a member of the CFSAC or the Chair would be able to give public testimony at another advisory committee meeting. Mr. Krafchick said that if it were possible to send someone as a member of the committee, it would make a great deal of sense and be very important. Dr. Jones said they would figure out how this could happen. Ms. Holderman asked whether this notice, and any future notices where they might want to intervene, could be placed on the CDC website. She stated this cross listing would be useful.

Page 30 of 41

Dr. Jones said that from her experience with the fast evolving HIV coding, there was a dialogue so that coding kept up. She expected there would be some connection, however not as comprehensive or active as that disease.

Dr. Mary Schweitzer, a member of the public, stated that the NCHS did come to CFSAC in 2005 and Dr. Reeves at the time was specific and said that CFS needed to be in R53 due to his own method of diagnosis. She suggested that this showed an obvious connection between the CFS side of CDC and NCHS at the time.

[Extract from Minutes, CFSAC Day One: May 10, 2011 ends]

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Heads up: Next meeting of Chronic Fatigue Syndrome Advisory Committee (CFSAC) (US)

Heads up: Next meeting of Chronic Fatigue Syndrome Advisory Committee (CFSAC) (US)

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

The next meeting of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) takes place on Tuesday and Wednesday, 10 and 11 May 2011.  A copy of the Agenda for this meeting will be posted as soon as it becomes available.

“Members of the public will have the opportunity to provide oral testimony at the May 10-11, 2011, meeting if pre- registered.”

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. 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.

CFSAC Notices

http://www.hhs.gov/advcomcfs/notices/index.html

CFSAC Roster

http://www.hhs.gov/advcomcfs/roster/index.html

CFSAC Meetings

Agenda; Minutes; Presentations; Recommendations

http://www.hhs.gov/advcomcfs/meetings/index.html

Recommendations to the Secretary of Health and Human Services

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

 

May 10-11, 2011 CFSAC Meeting

PDF: http://edocket.access.gpo.gov/2011/pdf/2011-6702.pdf

Html: http://edocket.access.gpo.gov/2011/2011-6702.htm

[Federal Register: March 22, 2011 (Volume 76, Number 55)]
[Notices]
[Page 15982]
From the Federal Register Online via GPO Access [wais.access.gpo.gov]
[DOCID:fr22mr11-88]

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Meeting of the Chronic Fatigue Syndrome Advisory Committee
———————————————————-

AGENCY: Department of Health and Human Services, Office of the Secretary, Office of the Assistant Secretary for Health.

ACTION: Notice.

SUMMARY: As stipulated by the Federal Advisory Committee Act, the U.S. Department of Health and Human Services is hereby giving notice that the Chronic Fatigue Syndrome Advisory Committee (CFSAC) will hold a meeting. The meeting will be open to the public.

DATES: The meeting will be held on Tuesday and Wednesday, May 10 and 11, 2011. The meeting will be held from 9 a.m. until 5 p.m. on May 10, 2011, and 9 a.m. until 4:30 p.m. on May 11, 2011.

ADDRESSES: Department of Health and Human Services; Room 800, Hubert H. Humphrey Building; 200 Independence Avenue, SW., Washington, DC 20201. For a map and directions to the Hubert H. Humphrey building, please visit http://www.hhs.gov/about/hhhmap.html .

FOR FURTHER INFORMATION CONTACT: Wanda K. Jones, DrPH; Executive Secretary, Chronic Fatigue Syndrome Advisory Committee, Department of Health and Human Services; 200 Independence Avenue, SW., Hubert Humphrey Building, Room 712E; Washington, DC 20201. Please direct all inquiries to cfsac@hhs.gov .

SUPPLEMENTARY INFORMATION: CFSAC was established on September 5, 2002.
The Committee shall advise and make recommendations to the Secretary, through the Assistant Secretary for Health, on a broad range of topics including (1) the current state of knowledge and research and the relevant gaps in knowledge and research about the epidemiology, etiologies, biomarkers and risk factors relating to CFS, and identifying potential opportunities in these areas; (2) impact and implications of current and proposed diagnosis and treatment methods for CFS; (3) development and implementation of programs to inform the public, health care professionals, and the biomedical academic and research communities about CFS advances; and (4) partnering to improve the quality of life of CFS patients.

The agenda for this meeting is being developed. The agenda will be posted on the CFSAC Web site,
http://www.hhs.gov/advcomcfs  when it is finalized. The meeting will be broadcast over the Internet as a real-time streaming video. It also will be recorded and archived for on demand viewing through the CFSAC Web site.

[Ed: the real-time streaming also has real-time auto transcription.]

Public attendance at the meeting is limited to space available.

Individuals must provide a government-issued photo ID for entry into the building where the meeting is scheduled to be held. Those attending the meeting will need to sign-in prior to entering the meeting room.

Individuals who plan to attend and need special assistance, such as sign language interpretation or other reasonable accommodations, should notify the designated contact person at cfsac@hhs.gov in advance.

Members of the public will have the opportunity to provide oral testimony at the May 10-11, 2011, meeting if pre- registered.

Individuals who wish to address the Committee during the public comment session must pre-register by Monday, April 18, 2011, via e-mail to cfsac@hhs.gov . Time slots for public comment will be available on a first-come, first- served basis and will be limited to five minutes per speaker; no exceptions will be made. Individuals registering for public comment should submit a copy of their oral testimony in advance to cfsac@hhs.gov  prior to the close of business on Monday, April 18, 2011.

If you do not submit your written testimony by the close of business Monday, April 18, 2011, you may bring a copy to the meeting and present it to a CFSAC Support Team staff member. Your testimony will be included in a notebook available for viewing by the public on a table at the back of the meeting room.

Members of the public not providing public comment at the meeting who wish to have printed material distributed to CFSAC members for review should submit, at a minimum, one copy of the material to the Executive Secretary, at cfsac@hhs.gov  prior to close of business on Monday, April 18, 2011. Submissions are limited to five typewritten pages. If you wish to remain anonymous, please notify the CFSAC support team upon submission of your materials to cfsac@hhs.gov

All testimony and printed material submitted for the meeting are part of the official meeting record and will be uploaded to the CFSAC Web site and made available for public inspection. Testimony and materials submitted should not include any sensitive personal information, such as a person’s social security number; date of birth; driver’s license number, State identification number or foreign country equivalent; passport number; financial account number; or credit or debit card number. Sensitive health information, such as medical records or other individually identifiable health information, or any non-public corporate or trade association information, such as trade secrets or other proprietary information also should be excluded from any materials submitted.

Dated: March 18, 2011.
Wanda K. Jones,
Executive Secretary, Chronic Fatigue Syndrome Advisory Committee.
[FR Doc. 2011-6702 Filed 3-21-11; 8:45 am]
BILLING CODE 4150-42-P

Previous two meetings:

 

May 10, 2010 Meeting

Agenda

Minutes

Presentations

Recommendations

Videocast    [RealPlayer is required to view]

CFSAC Recommendations – May 10, 2010

http://www.hhs.gov/advcomcfs/recommendations/05102010.html

The Secretary should ask the blood community to defer indefinitely from donating any blood components, any person with a history of chronic fatigue syndrome.

The Secretary should recognize the special challenges of ensuring that CFS is part of any efforts to train or educate health care providers under health reform.

The Secretary should direct CMS, AHRQ, and HRSA to collaborate on developing a demonstration project focused on better value and more efficient and effective care for persons with CFS. This can be a public-private effort, and monitoring outcomes and costs should be part of the overall evaluation.

The Secretary should ask the Designated Federal Officer to explore adding a web-based meeting to conduct CFSAC business.

CFSAC rejects proposals to classify CFS as a psychiatric condition in U.S. disease classification systems. CFS is a multi-system disease and should be retained in its current classification structure, which is within the “Signs and Symptoms” chapter of the International Classification of Diseases 9-Clinical Modification (ICD 9-CM).*

*DFO Note: The ICD 10-CM is scheduled for implementation on October 1, 2013. In that classification, two mutually exclusive codes exist for chronic fatigue [sic]:

post-viral fatigue syndrome (in the nervous system chapter), and
chronic fatigue syndrome, unspecified (in the signs and symptoms chapter).

HHS has no plans at this time to change this classification in the ICD 10-CM.

October 12, 2010 Science Day
October 13-14, 2010

Agenda

Minutes

Presentations

Recommendations

Videocast    [RealPlayer is required to view]

CFSAC Recommendations – October 13-14, 2010

http://www.hhs.gov/advcomcfs/recommendations/1012-142010.html

The specific recommendations articulated by the Committee are:

Develop a national research and clinical network for ME/CFS (myalgic encephalomyelitis/CFS) using regional hubs to link multidisciplinary resources in expert patient care, disability assessment, educational initiatives, research and clinical trials. The network would be a resource for experts for health care policy related to ME/CFS.

Engage the expertise of CFSAC as HHS moves forward to advance policy and agency responses to the health crisis that is ME/CFS.

Adopt the term “ME/CFS” across HHS programs.

Memo from Secretary Sebelius to Christopher Snell, CFSAC Chair, on the October 2010 Meeting

http://www.hhs.gov/advcomcfs/sebelius_memo.pdf

Posting of revised draft proposals for DSM-5 criteria postponed until August

The APA has postponed the release of revised draft proposals for DSM-5 criteria by three months

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

Slip slidin’ away…

[Information superceded by second and third DSM-5 draft propoals.]

[1] Screenshot iCAT, ICD-11: Chapter 5: F45 – F48.0: http://dxrevisionwatch.files.wordpress.com/2010/05/2icatchapter5f45somatoform.png

[2] Article: Erasing the interface between psychiatry and medicine (DSM-5), Chapman S, 13 February 2011: http://wp.me/pKrrB-Vn

[3] Article: Revisions to DSM-5 proposals on 14.01.11: New category proposed “Simple Somatic Symptom Disorder, Chapman S, 16 January 2011: http://wp.me/pKrrB-St

[4] DSM-5 Development website: http://www.dsm5.org/about/Pages/Timeline.aspx

“CFS orphaned in the “R” codes in US ICD-10-CM” and “Erasing the interface between psychiatry and medicine” (DSM-5)

Two new posts on Dx Revision Watch

Shortlink: http://wp.me/p5foE-3h3

“CFS orphaned in the “R” codes in US specific ICD-10-CM”

http://wp.me/pKrrB-V4

and

“Erasing the interface between psychiatry and medicine” (DSM-5)

http://wp.me/pKrrB-Vn

Action for M.E. and Facebook; CISSD Final Report finally published

Action for M.E. and Facebook; CISSD Final Report finally published

WordPress Shortlink: http://wp.me/p5foE-2gi

Action for M.E. maintains a Facebook site at: http://www.facebook.com/actionforme

Over the past few weeks, questions and criticism around Action for M.E.’s governance, the way in which it relates to its membership, its policies and operation and its relationship with government have been raised by various users on its Facebook “Wall”.

Action for M.E. has chosen not to respond to these questions individually, on the Wall, itself, but by issuing a set of responses in a PDF document. The first document was this one: Facebook responses 20.10.09

A second, updated, set of responses was issued yesterday. It’s not clear whether these responses have been compiled by Action for M.E.’s new Policy Manager or by another member of staff, as the document is unsigned, but it’s interesting to see how the organisation has fielded these questions and concerns.

[To clarify – none of the questions for which responses were provided had been raised by me. I prefer to liaise directly with organisations for information, documents or for policy and position statements or, where applicable, obtain information via the Freedom of Information Act.]

Action for M.E. is becoming rather discomforted that its Facebook site is being used by some as a vehicle for raising political issues but you cannot take the politics out of ME. Users are already asking how the organisation intends to define “political”.

Those of us who were members, in 2003, of the joint charities’ message board “MEssage-UK” will recall how rapidly first Action for M.E., then AYME pulled out of this venture when faced with too many awkward questions; how the message board was then set for pre-moderation by the ME Association; how the moderator, Tony Britton, vetoed posts of a “political nature” without ever setting out how he was going to define what came under the heading of “political” and what did not; how the archives were sifted through for “contentious” messages by senior ME Association staff and then quietly excised without the authors being informed; how the board was closed down suddenly just days before the critical December 03 AGM in which Dr Shepherd was standing as a candidate in the Trustee elections…

When will our patient organisations learn that if they are going to place themselves on public platforms they first need to develop policies for the fielding of questions?

This latest set of responses can be opened in PDF format here:

PDF file: ONGOING FB Q and A document. 29.10.09

Answers to questions raised on the Action for M.E. facebook page, October 2009. Updated

or from Action for M.E’s website, here: http://tinyurl.com/ongoingFB-responses291009

—————-

One of the responses is for a question raised (note, not by me) around the CISSD Project, for which Action for M.E. had acted as principal administrators throughout the project’s life (2003 to 2007).

In response to this question, on Page 23:

Question: “What was your involvement in the CISSD project Conceptual Issues in Somatoform and Similar Disorders for which you received a grant of 67k and why was this project kept so secretive from your members? Only information about it was released when freedom of information act requests were made that pushed you in to a corner where you had to confirm you were involved in it. Was this CISSD project set up with the purpose as suggested by other sources with the intent to look at changing the ME/CFS ICD-10 coding* to that of a Somatoform disorder?”

Action for M.E prefaces its reply with, “As a charity, Action for M.E. is not obliged to answer questions under the Freedom of Information Act but provides information of its free will, as resources allow.”

I should like to clarify that the Freedom of Information requests submitted by me in relation to the CISSD Project had been submitted to the Institute of Psychiatry. Information resulting out of these requests under the FOIA is available here: https://meagenda.wordpress.com/dsm-v-directory/information-obtained-under-foi-act/

One of my requests to the Institute of Psychiatry had been for a copy of the December 2007 “CISSD Final Report” from Dr Richard Sykes to Action for M.E. I had suggested to the Institute of Psychiatry’s Legal Compliance Office that the report ought to be provided with a erratum note, by Dr Sykes, addressing a number of errors he had made in the document that had come to light in June 09, when an unauthorised copy of the text had been placed in the public domain.

Unfortunately, what the Institute of Psychiatry were provided with by Dr Sykes, in order to fulfil the request, is evidently an earlier draft of the December 2007 text. It is missing the Contents page, and there are other disparities between the text that I was provided with and the Final version. No erratum note had been attached, either.

However, as part of its response to the Facebook question, Action for M.E. has now elected to publish two files. The first is a copy of the December 2007 CISSD “Final Report” to Action for M.E., the second, a copy of the “Co-ordinator’s Report”, with a covering letter and summary.

Action for M.E. has finally put these documents in the public domain!

Open PDF files here:

CISSD project report 1

The CISSD Project and CFS/ME Report on the CISSD Project for Action for ME 

Conceptual Issues in Somatoform and Similar Disorders

Report to be read in conjunction with Co-ordinator’s Final Report

Richard Sykes December 2007

CISSD project report 2

Covering letter

The CISSD Project 2003-2007

(Conceptual Issues in Somatoform and Similar Disorders)

Summary

FINAL REPORT OF CO-ORDINATOR   Richard Sykes PhD, CQSW

or from Action for M.E’s website, here:

http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%201.pdf
http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%202.pdf

 

In August, Action for M.E. had published an article titled “Classification conundrum” on pages 16 and 17 of Issue 69 of its membership magazine, InterAction.

You can read a copy of the article here, in an ME agenda posting dated 25 August 2009:

“Action for M.E. stuffs the elephant back into the cupboard”

Note that although the Project had been initiated by Dr Richard Sykes, Dr Sykes does not appear to have contributed to this article – basically an apologia piece authored by Dr Derek Pheby.

In fact, Dr Sykes and his role as instigator and co-ordinator of the Project is not mentioned in the article at all. Nor is the Project’s source of funding – the charitable Trust run by Dr Sykes’ brother, Sir Hugh Sykes, a non-executive director of A4e, the largest European provider of Welfare to Work programmes. 

The December 2007 “Final Report” document has historical significance.  It also contains material (including an entire Appendix) which was omitted from the “CISSD Summary Report” that the ME Association published in June, this year, having negotiated with Dr Sykes for an article. (But having trumped Action for M.E., the MEA has made no comment whatsoever on the implications of the CISSD Project nor provided its membership with an analysis of the various papers and documents that came out of it.  Nor has the MEA made any comment or published any information on the progress of the ICD-10 and DSM revision processes for which the CISSD Project was initiated and has fed into.)

The document sets out Dr Sykes’ views, opinions and perceptions (and misperceptions) that had not previously been publicly available. It would have been appropriate for Action for M.E. to have negotiated with Dr Sykes for this document to have been published in 2007.  Instead, it kept the lid on this project –  a project that had been chaired by Professors Michael Sharpe and Kurt Kroenke and had involved many influential, international researchers and clinicians from the field of liaison psychiatry and psychosomatics – several of whom are now directly involved in the revision of the American Psychiatric Association’s DSM-IV.

In August, I called publicly on Action for M.E. to publish a copy of the CISSD “Final Report” on its website and to preface it with an erratum note addressing both the errors of coding within “Appendix B” of the document and also Dr Sykes’ misconception that “Chronic fatigue syndrome” does not appear in ICD-10.

Chronic fatigue syndrome is listed in the International Statistical Classification of Diseases and Related Health Problems: 10th Revision Version for 2006, Volume 3, the Alphabetical Index (ICD-10 Volume 3).

For the entry in question, see page 528, top right hand column:

http://www.scribd.com/doc/7350978/ICD10-2006-Alphabetical-Index-Volume-3

Since no erratum note has been published with these documents please be aware that where Dr Sykes has written “G33.3” and “G33.4” on Pages 12 and 13 of document:

http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%201.pdf

this should read “G93.3” and “G93.4”.

Why has Action for M.E. published these documents without negotiating with Dr Sykes for an Erratum?

Why did Action for M.E. not publish these documents in August to accompany the article in InterAction?

 

*There is no coding for “ME/CFS” in ICD-10. 
Postviral fatigue syndrome is classified in Chapter VI of ICD-10 Volume 1: The Tabular List at G93.3.
(Benign) myalgic encephalomyelitis is classified in Chapter VI of ICD-10 Volume 1: The Tabular List at G93.3.
Chronic fatigue syndrome is listed in ICD-10 Volume 3: The Alphabetical Index under G93.3.

—————–

Text version of December 2007 CISSD “Final Report” here: CISSD Final Report to AfME 2007

Text version of December 2007 CISSD “Co-ordinator’s Report” here: CISSD PROJECT Coordinators Final Report

June 2009 Summary Report on CISSD as published by the ME Association

The Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report by DSM-V Work Group members, Joel Dimsdale and Francis Creed was published in the June issue of the Journal of Psychosomatic Research:

Free access to both text and PDF versions of this Editorial at: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

For detailed information on the proposed structure of ICD-11, the Content Model and operation of iCAT, the collaborative authoring platform through which the WHO will be revising ICD-10, please scrutinise key documents on the ICD-11 Revision Google site:

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

For information around the DSM and ICD revision processes see DSM-V and ICD-11 Directory page: https://meagenda.wordpress.com/dsm-v-directory/

Journal of Psychosomatic Research: In Press: Is there a better term than “Medically unexplained symptoms”?

elephant3

Image | belgianchocolate | Creative Commons

Keywords

APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS

The Elephant in the Room Series Three:

Journal of Psychosomatic Research In Press: Is there a better term than “Medically unexplained symptoms”?

WordPress Shortlink for this posting: http://wp.me/p5foE-2d6

24 October 2009

 

An In Press version of the Editorial: Is there a better term than “Medically unexplained symptoms”?, to be published in a forthcoming issue of the Journal of Psychosomatic Research, is already available online (purchase required). The Editorial needs to be read in conjunction with a white paper from:

The European Association for Consultation-Liaison Psychiatry and Psychosomatics (EACLPP) http://www.eaclpp.org/

A white paper of the EACLPP Medically Unexplained Symptoms study group

Patients with medically unexplained symptoms and somatisation – a challenge for European health care systems  (Gillian.D.Dunkerley@manchester.ac.uk )

The White Paper can be downloaded from the EACLPP site here: http://www.eaclpp.org/working_groups.html

The document is approx 76 pages long, including tables and charts.  I had considerable difficulty opening this document, in May, due to a corrupted table and I note that the file on the EACLPP site is still glitchy. A copy of the document was therefore obtained directly from the EACLPP and can be opened by clicking the link below.  Note that there may have been revisions to the document as supplied on 19 May, but it will serve as reference for those who might also experience difficulties opening the file from the EACLPP website. If you would like a copy of the file sent to you as a Word.doc, email ME agenda with “EACLPP MUS DOC” in the subject line and I will forward a copy [600 KB].  The tables and charts are slow to load.

Draft – prepared by: Peter Henningsen and Francis Creed January 2009

EACLPP Working group on MUS version 16 Jan 2009

The current issue of the Journal of Psychosomatic Research is Volume 67, Issue 5, Pages A1-A4, 367-466 (November 2009)  http://www.sciencedirect.com/science/journal/00223999

Journal of Psychosomatic Research

In Press

Editorial
Is there a better term than “Medically unexplained symptoms”?

Abstract: http://tinyurl.com/jpsychoresMUS

doi:10.1016/j.jpsychores.2009.09.004

References and further reading may be available for this article. To view references and further reading you must purchase this article.

Editorial

Francis Creed a, Elspeth Guthrie a, Per Fink b, Peter Henningsen c, Winfried Rief d, Michael Sharpe e and Peter White f

a University of Manchester, Manchester, UK 
b University Hospital Aarhus, Denmark
c Technical University, Munich Germany
d University of Marburg, Germany
e University of Edinburgh, UK
f Queen Mary University of London, UK

Received 24 August 2009; revised 24 August 2009; accepted 7 September 2009. Available online 17 October 2009.

Article Outline

Introduction

“Medically unexplained symptoms” – one advantage, but many reasons to discontinue use of the term

Criteria to judge the value of alternative terms for “medically unexplained symptoms”

Terms suggested as alternatives for “medically unexplained symptoms”

Implications for treatment

Implications for DSM-V and ICD-11

Conclusion

References

Note:

Francis Creed is Co-Editor of the Journal of Psychosomatic Research.

Francis Creed, Per Fink, Peter Henningsen and Winfried Rief were all members of the international CISSD Project, (Principal Administrators: Action for M.E.; Co-ordinator: Dr Richard Sykes. Dr Sykes is now engaged in the “London MUPSS Project” in association with the Institute of Psychiatry).

Michael Sharpe was UK Chair for the CISSD Project.

Michael Sharpe and Francis Creed have been members of the APA’s DSM-V Somatic Distress Disorders Work Group since 2007.

Francis Creed (UK), Peter Henningsen (Germany) and Per Fink (Denmark) are the co-ordinators of European EACLPP MUS Work Group.

Francis Creed and Peter Henningsen were the authors of “A white paper of the EACLPP Medically Unexplained Symptoms study group – Patients with medically unexplained symptoms and somatisation – a challenge for European health care systems”, January 2009.

Draft white paper here: http://www.eaclpp.org/working_groups.html

Per Fink is a member of the Danish Working Group on Chronic Fatigue Syndrome, established in August 2008 and expected to complete its work in spring 2009.

 

An Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report by DSM-V Work Group members, Joel Dimsdale and Francis Creed on behalf of the DSM-V Workgroup on Somatic Symptom Disorders was published in the June 2009 issue of the Journal of Psychosomatic Research.

Full text of the June 2009 DSM-V SSD Work Group preliminary report can be accessed here:

http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

See section: Psychological factor affecting general medical condition 

“…The conceptual framework that we propose will allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome…”

No updates or reports have been published on the APA’s website by DSM-V Task Force or Work Groups since brief reports issued in April 2009. DSM-V is anticipated to be finalised in May 2012 with field trials expected to start this October. No detailed Timeline for DSM-V is available.

Previous DSM Task Force chairs, Robert L Spitzer and Allen Frances, have been two of the most vocal critics of the current Task Force’s oversight of the revision process. Read their joint letter to the APA Board of Trustees here:  Letter to APA Board of Trustees July 09. In Dr Frances Responds to Dr Carpenter: A Sharp Difference of Opinion, Psychiatric Times, 9 July, Frances called for the posting of all the suggested wordings for DSM-V criteria sets well before considering field trials.

 

Javier Escobar, co-author of the Special Report: Unexplained Physical Symptoms: What’s a Psychiatrist to Do? Psychiatric Times, Aug 2008, was also a member of the Work Group for the “Conceptual Issues in Somatoform and Similar Disorders (CISSD) Project.

Javier Escobar is a member of the DSM-V Task Force, serves as a Task Force liaison to the Somatic Symptom Disorders Work Group and said to work closely with this work group.

http://www.psychiatrictimes.com/display/article/10168/1171223

01 August 2008
Psychiatric Times. Vol. 25 No. 9
Special Report

PSYCHIATRY AND MEDICAL ILLNESS
Unexplained Physical Symptoms What’s a Psychiatrist to Do?

Humberto Marin, MD and Javier I. Escobar, MD

According to Escobar and Marin:

“The list of somatoform disorders kept expanding with the addition of vague categories, such as “undifferentiated somatoform disorder” or “somatoform disorder NOS [not otherwise specified],” which, unfortunately, are the most common diagnoses within the somatoform genre. These terms failed to transcend specialty boundaries. Perhaps as a corollary of turf issues, general medicine and medical specialties started carving these syndromes with their own tools. The resulting list of “medicalized,” specialty-driven labels that continues to expand includes fibromyalgia, chronic fatigue syndome, multiple chemical sensitivity, and many others (Table 1).

Table 1

Functional somatic syndromes

Irritable bowel syndrome
Chronic fatigue syndrome
Fibromyalgia
Multiple chemical sensitivity
Nonspecific chest pain
Premenstrual disorder
Non-ulcer dyspepsia
Repetitive strain injury
Tension headache
Temporomandibular joint disorder
Atypical facial pain
Hyperventilation syndrome
Globus syndrome
Sick building syndrome
Chronic pelvic pain
Chronic whiplash syndrome
Chronic Lyme disease
Silicone breast implant effects
Candidiasis hypersensivity
Food allergy
Gulf War syndrome
Mitral valve prolapse
Hypoglycemia
Chronic low back pain
Dizziness
Interstitial cystitis
Tinnitus
Pseudoseizures
Insomnia
Systemic yeast infection
Total allergy syndrome”

These labels fall under the general category of functional somatic syndromes and seem more acceptable to patients because they may be perceived as less stigmatizing than psychiatric ones. However, using DSM criteria, virtually all these functional syndromes would fall into the somatoform disorders category given their phenomenology, unknown physical causes, absence of reliable markers, and the frequent coexistence of somatic and psychiatric symptoms.”

DSM-V and ICD-11 have committed as far as possible “to facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria” with the objective that “the WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are identical for ICD and DSM.”

The International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders most recent meeting took place on 28 – 29 September. It is anticipated that a Summary Report of the meeting will be available in late November/December.

For detailed information on the proposed structure of ICD-11, the Content Model and operation of iCAT, the collaborative authoring platform through which the WHO will be revising ICD-10, please scrutinise key documents on the ICD-11 Revision Google site:

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

For information around the DSM and ICD revision processes see DSM-V and ICD-11 Directory page: https://meagenda.wordpress.com/dsm-v-directory/

ICD Revision Advisory Groups: Mental and Behavioural Disorders and TAG Neurology

Information on the new International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders and the Topic Advisory Group (TAG) for Neurology

WordPress Shortlink for this posting: http://wp.me/p5foE-25M

The text below has been compiled using information provided by the Senior Project Officer, Department of Mental Health and Substance Abuse, WHO, Geneva, and is published with permission. The text may be reposted provided it is published unedited, in full and https://meagenda.wordpress.com is credited as the source.  

The International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders was constituted by the WHO for a period of two years (2007 – 2008) with the primary task of advising the WHO on all steps leading to the revision of the mental and behavioural disorders classification in ICD-10, in line with the overall ICD revision process.

The initial period of operation has now expired and the group has been reconstituted and reappointed for the next two year period. The appointment of the Harmonization Group and other working groups reporting to the Advisory Group has also now expired, and new working groups will be appointed based on the current needs of the revision.

The Advisory Group is co-ordinated by Senior Project Officer, Dr Geoffrey M Reed, PhD, who is seconded to the Department of Mental Health and Substance Abuse, WHO, Geneva, through the IUPsyS (International Union for Psychological Science). The Department of Mental Health and Substance Abuse will also be managing the technical part of the revision of Diseases of the Nervous System (currently Chapter VI), as it is doing for Chapter V.

The new Advisory Group expands and makes some changes to its composition in order to obtain better geographical representation and also based on the nature of the tasks of the next period of the revision process.

The members of the new International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders are:

Steven Hyman (Chair), Harvard University, Cambridge, Massachusetts, USA
José Luís Ayuso-Mateos, Universidad Autónoma de Madrid, Madrid, Spain
Alan Flisher, University of Cape Town, Rondebosch, South Africa
Wolfgang Gaebel, Heinrich-Heine University, Düsseldorf, Germany
Oye Gureje, University College Hospital, Ibadan, Nigeria
Assen Jablensky, University of Western Australia, Crawley, Australia
Brigitte Khoury, American University of Beirut Medical Center, Beirut, Lebanon
Anne Lovell, Institute National de la Santé et de la Recherche Médicale, Paris, France
Maria Elena Medina-Mora, Instituto Nacional de Psiquiatria Ramon de la Fuente, México, D.F., Mexico.
Afarin Rahimi, Tehran University of Medical Sciences, Tehran, Iran
Norman Sartorius, Geneva, Switzerland
Pratap Sharan, All India Institute of Medical Sciences, New Delhi, India
Pichet Udomratn, Prince Songkha University, Hat Yai, Thailand
Xiao Zeping, Shanghai Mental Health Center, Shanghai, China

The professional and scientific organisations that have been asked to appoint representatives to the International Advisory Group for Mental and Behavioural Disorders, and the names of their representatives, are:

International Association of Child and Adolescent Psychiatry and Allied Professions (IACAPAP):
Per-anders Rydelius, Karolinska Institutet, Stockholm, Sweden

International Council of Nurses (ICN):
Tesfamicael Ghebrehiwet, International Council of Nurses, Geneva, Switzerland

International Federation of Social Workers (IFSW):
Dr Sabine Bährer- Kohler, Psychiatric University Clinic, Basel, Switzerland

International Union of Psychological Science (IUPsyS):
Ann D. Watts, Entabeni Hospital, Durban, South Africa

World Organization of National Colleges, Academies, and Academic Associations of General Practitioners/Family Physicians (WONCA):
Michael Klinkman, University of Michigan, Ann Arbor, Michigan, USA

World Psychiatric Association (WPA):
Mario Maj, University of Naples, Naples, Italy

All of these organisations were also represented on the previous Advisory Group with the exception of IACAPAP.

The first meeting of the reconstituted Advisory Group took place on 28 – 29 September 2009, in Geneva. There have been no other meetings since the December 2008 meeting of the former group. It is anticipated that a Summary Report of the meeting held last month, 28 – 29 September will be available within two months.

The report of the meeting held on 1 – 2 December 2008 can be read here: http://www.who.int/mental_health/evidence/icd_advisory_group_december_08_summary.pdf

—————–

Topic Advisory Group for Neurology

Lead WHO Secretariat for TAG Neurology is Dr Tarun Dua, Management of Mental and Brain Disorders, Department of Mental Health and Substance Abuse, WHO. Email: duat@who.int.

Dr Dua, a neurologist, co-ordinated the Atlas Multiple Sclerosis Resources in the World 2008, a collaboration between the World Health Organization and the Multiple Sclerosis International Federation and was a co-author of the World Health Organization publication, Neurological Disorders: Public Health Challenges, 2006 or download by chapters in PDF format at: http://www.who.int/mental_health/neurology/neurodiso/en/index.html

The members of the Topic Advisory Group (TAG) for Neurology are:

Raad Shakir (Chair), Imperial College London, London, UK
Donna Bergen, Rush University Medical Center, Chicago, Illinois, USA
Pierre Bill, Inkosi Ambert Luthuli Central Hospital, Durban, South Africa
Mandaville Gourie-Devi, Institute of Human Behaviour and Allied Sciences, New Delhi, India
Mitsuru Kawamua, School of Medicine, Showa University, Tokyo, Japan
Marco Medina, National Autonomos University of Honduras, Tegucigalpa, Honduras
Mohamad Mikati, American University of Beirut Medical Center, Beirut, Lebanon

The professional and scientific organisations that have been asked to appoint representatives to the Topic Advisory Group for Neurology, and the names of their representatives, are:

Alzheimer’s Disease International:
Murat Emre, Istanbul Faculty of Medicine, Istanbul, Turkey

International Brain Research Organization:
Krister Kristensson, Karolinska Institutet, Stockholm, Sweden

International Child Neurology Association
Marc Patterson, Mayo Clinic, Rochester, Minnesota, USA

International Headache Society:
Jes Olesen, University of Copenhagen, Copenhagen, Denmark

International League Against Epilepsy:
Ettore Beghi, Istituto “Mario Negri”, Milan, Italy

International Neuropsychological Society:
Andreas Monsch, University Hospital Basel, Basel, Switzerland

Movement Disorders Society:
Kapil D Sethi, Medical College of Georgia, Augusta, Georgia, USA

Multiple Sclerosis International Federation:
Alan J. Thompson, Director, National Hospital for Neurology & Neurosurgery, London, UK

World Federation of Neurosurgical Societies:
Marc Levivier, Centre Romand de Neurochirurgie, Lausanne, Switzerland

World Federation of Neurology:
Johan Aarli, University of Bergen, Bergen, Norway

World Stroke Organization:
Bo Norrving, Lund University, Lund, Sweden

1 October 2009

—————————–

Daily iCAMP YouTubes on the WHOICD11 Channel: http://www.youtube.com/user/WHOICD11

Transcripts of YouTube narrations on the ICD11 blog: http://whoicd11.blogspot.com/

For further information on the proposed structure of ICD-11, the Content Model and iCAT, the collaborative authoring platform the WHO will be using to revise ICD-10:

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

Agenda for the 22 September – 2 October iCAMP Alpha Draft Training Meeting [MS Word]

Content Model Style Guide document [MS Word]

Morbidity Reference Group Discussion papers:
        ICD-11 rules, conventions and structure [MS Word]
        Revision topics for topic advisory groups [MS Word]

Content Model Blank document [Excel]

Content Model Myocardial infarction example document [Excel]

Content Model Hypertension Category example document [Excel]

ICD 11 Alpha Draft presentation by Dr B. Ustun [MS pptx slides]

Start-Up List presentation by Dr R. Jakob [MS pptx slides]

Myocardial infarction Content Model presentation [MS ppt slides]

[Note that some of these documents are “works in progress” and subject to ongoing review and revision.]

The Elephant in the Room Series Three: Who’s watching the WHO?

elephant3

Image | belgianchocolate | Creative Commons

Keywords

APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS

The Elephant in the Room Series Three:

Who’s watching the WHO?

WordPress Shortlink for this posting: http://wp.me/p5foE-25h

30 September 2009

It’s now Week Two of the Geneva iCAMP Meeting to test iCAT – the multi-layered, wiki-like collaborative authoring platform that the WHO will be using to revise ICD-10. Are you watching the video reports?

The most important difference between ICD-10 and ICD-11 will be the Content Model:

“Population of the Content Model and the subsequent review process will serve as the foundation for the creation of the ICD-11. The Content Model identifies the basic characteristics needed to define any ICD category through use of multiple parameters (e.g. Body Systems, Body Parts, Signs and Symptoms, Diagnostic Findings, Causal Agents, Mechanisms, Temporal Patterns, Severity, Functional Impact, Treatment interventions, Diagnostic Rules).”

For the next edition of ICD, we’re unlikely to be looking at just a couple of lines in Chapter VI*, or whatever…

Daily iCAMP YouTubes are being posted on the WHOICD11 Channel. They’re all less than five minutes long and you can watch Days 1 to 6 here: http://www.youtube.com/user/WHOICD11 or on ME agenda here and here

For those with connections too slow for YouTube, transcripts of the narrations that intersperse the footage are being posted on the ICD11 blog, here: http://whoicd11.blogspot.com/

There are three more YouTube reports to come before iCAMP disperses.

The videos will give a feel for the potential extent of the Content Model and how the iCAT platform is intended to function as a multi-user, web-based authoring and review tool, through which alpha and beta drafts will be developed.

But for better understanding of the proposed structure of ICD-11 and the potential implications for the population of content, you really need to go here:

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

Here you will find:

Minutes of the 3 – 7 August 2009 iCAMP Meeting, Geneva [MS Word]

Provisional List of Participants for 22 September – 2 October 2009 iCAMP Meeting [MS Word]

Participants’ CVs [MS Word]

Agenda for the 22 September – 2 October iCAMP Alpha Draft Training Meeting [MS Word]

Content Model Style Guide document [MS Word]

Morbidity Reference Group Discussion papers:
ICD-11 rules, conventions and structure [MS Word]
Revision topics for topic advisory groups [MS Word]

ICD11 Model Representation Comparison document [MHTML]

Content Model Blank document [Excel]

Content Model Myocardial infarction example document [Excel]

Content Model Urticaria example document [Excel]

Content Model Hypertension Category example document [Excel]

ICD 11 Alpha Draft presentation by Dr B. Ustun [MS pptx slides]

Start-Up List presentation by Dr R. Jakob [MS pptx slides]

iCAT Tool presentation by T. Tudorache [MS ppt slides]

Myocardial infarction Content Model presentation [MS ppt slides]

Workflow document [pdf]

and ancillary material.

[Note that some of these documents are “works in progress” and subject to ongoing review and revision, so you will need to monitor the site from time to time for revised and updated versions, which is why I’ve not given the file paths.]

[Note also, that those with Office 2003 installed may not be able to open the slides of two presentations produced using the more recent PowerPoint file format “pptx” and will need to download the free MS Office 2007 PowerPoint Viewer (pptx viewer) or in my case, in order to view the Robert Jakob Start-Up List presentation, the MS Office Compatibility Pack for Word, Excel, and PowerPoint 2007 File Formats.]

The ICD-11 alpha draft is planned for May 2010, the beta draft for May 2011 and the final draft expected to be submitted to WHA by 2014, for implementation in 2015.

The additional dimension of the concurrent DSM-V development process towards its own alpha draft, the ICD-DSM commitment to congruency and “harmonization” between the two systems and the involvement of DSM Task Force members in the Advisory Group for Mental and Behavioural Disorders needs to be borne in mind. The APA plans to publish DSM-V in May 2012, several years ahead of ICD-11.

We don’t have an ETA, yet, for the launch of iCAT.

“The starting point for the ICD-11 alpha draft will be the “Start-Up List” of categories which has been drafted by WHO/HQ to initiate the editing process. This list includes all the proposals received to revise the existing ICD as well as the input from ICD national modifications. During alpha drafting, detailed structured definitions will be added to these ICD categories according to a common model…”    Agenda, ICD-11 Alpha Draft Training Meeting

It’s not yet known whether other proposals that have relevance to the ME community have already been submitted for review, over and above those proposals evident from the ICD Update and Revision Platform; or what input coming from ICD national modifications, WHO affiliates or other sources may have significance for us. That is, we do not know what will be the starting point for the reviewing of those sections relevant to our patient community.

“The ICD-11 will be a collaboratively authored project, and many people will be submitting proposals for content, much like wikipedia. Unlike Wiki, however, the ICD will be peer reviewed with the TAGs serving as the editorial boards. The Managing Editor for each TAG…will collect, synthesize, and present the information for each proposal, and they are responsible for ensuring that the correct team of reviewers is selected…”

“The beauty of a collaborative authoring tool like the iCAT is that it allows the creation of the ICD-11 to draw on the expertise of anyone at anytime, anywhere in the world. After a proposal is created, the Managing Editor will serve as “postmaster”, ensuring that each proposal is complete and correctly formatted, as well as thoroughly supported, before forwarding the content proposal on to the specifically chosen team of independent peer reviewers. It is also the job of the Managing Editor to filter out or address those proposals which do not fulfill the necessary criteria.

“Those content proposals which receive the appropriate percentage of approvals by the peer reviewers will be passed along to the Topic Advisory Group for further review. The TAG is responsible for further evaluation of the content proposal and the supporting information provided. Each content proposal which reaches this stage may also require the review of other, parallel, TAGs, if the content of the proposal overlaps between multiple TAG areas. Each proposal which meets the exacting requirements of the TAG or TAGs will be passed along for further evaluation by the Revision Steering Group…”

The Summary of the December 2008 Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders reported that the Advisory Group for the Revision of Diseases of the Nervous System (that is TAG Neurology and Chapter VI) had been approved and its members appointed and that the WHO Department of Mental Health and Substance Abuse would be managing the technical part of the revision of Chapter VI, as it is doing for Chapter V.

The 5th Meeting of the now reconstituted Advisory Group for the Revision of Mental and Behavioural Disorders was scheduled to take place this week, on 28 – 29 September.

Following this meeting, I hope to be in a position to provide information about the appropriate channels of communication with TAG Neurology and TAG Mental Health, the process through which stakeholders will be able to submit proposals and what will be required of them.

In the meantime, I recommend familiarising yourselves with the documentation and processes evolving at:
https://sites.google.com/site/icd11revision/home/documents

There’s a lot of material here, but we need to be informing ourselves around these processes, now.

*According to a discussion paper on ICD-11 rules, conventions and structure, it is proposed that Arabic should replace roman numerals throughout the classification (eg chapter numbering), except where they are the standard for a disease concept.  So for ICD-11, we might anticipate Chapter 5, Chapter 6 etc. rather than Chapter V, Chapter VI.

Suzy Chapman
30 September 2009

ICD-11 iCAMP on YouTube: Week Two

ICD-11 iCAMP on YouTube: Week Two

Week Two of the Geneva iCamp Meeting to test the iCAT collaborative authoring tool that the WHO will be using to revise ICD-10.

iCamp YouTube videos at:  WHO ICD11 Channel

Follow WHO ICD-11 on Twitter: http://twitter.com/WHOICD11

Follow WHO ICD-11 on Blogspot: http://whoicd11.blogspot.com

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ICD-11 Revision on Google Sites: https://sites.google.com/site/icd11revision

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YouTubes Days 1, 2, 3 and 4 can also be viewed at: http://wp.me/p5foE-23l

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WHO ICD Revision: iCAMP daily YouTubes:

Day 5 | 28 September 2009 |  4.28 mins

Fifth day of the World Health Organization’s International Classification of Diseases (ICD) Revision iCamp Meeting. This meeting will discuss the Collaborative Authoring Tool (iCAT) that will be used to revise the ICD towards its 11th Edition.

 
Day 6 | 29 September 2009 | 4.16 mins

Sixth day of the World Health Organization’s International Classification of Diseases (ICD) Revision iCamp Meeting. This meeting will discuss the Collaborative Authoring Tool (iCAT) that will be used to revise the ICD towards its 11th Edition.


 

Day 7 | 30 September 2009 | 3.47 mins

Seventh day of the World Health Organization’s International Classification of Diseases (ICD) Revision iCamp Meeting. This meeting will discuss the Collaborative Authoring Tool (iCAT) that will be used to revise the ICD towards its 11th Edition.

Day 8 | 01 October 2009 | 2.44 mins

Eighth day of the World Health Organization’s International Classification of Diseases (ICD) Revision iCamp Meeting. This meeting will discuss the Collaborative Authoring Tool (iCAT) that will be used to revise the ICD towards its 11th Edition.

Day 9 | 02 October 2009 | 5.50 mins

Ninth and final day of the World Health Organization’s International Classification of Diseases (ICD) Revision iCamp Meeting. This meeting will discuss the Collaborative Authoring Tool (iCAT) that will be used to revise the ICD towards its 11th Edition.

YouTubes Days 1, 2, 3 and 4: http://wp.me/p5foE-23l

ICD-11 iCAMP on YouTube

ICD-11 iCAMP on YouTube (Days 1, 2, 3and 4 now available below)

22 September saw the start of the Geneva iCamp Meeting to test the iCAT collaborative authoring tool that the WHO will be using to revise ICD-10. Follow WHOICD11 on Twitter: http://twitter.com/WHOICD11

According to ICD Revision on Facebook

i-CAMP

The training meeting for the ICD-11 alpha draft will test the collaborative authoring tool (iCAT) and further develop the joint authoring tools and procedures. Aims of the iCAMP: Shared Learning Process: – Learn the tooling environment – Learn …how to populate the content model and make structural changes – Learn the overall workflows for the revision process – Revise the overall tooling and organization of alpha-drafting Simulating the “Managing Editor” tasks for alpha-drafting – Managing the input from different sources into the ICD categories – Identifying the reviewers – Managing Workflows Observing the interactions amongst the participants to develop ideas for social networking for the ICD-11 Beta Drafting Phase.

The starting point for the ICD-11 alpha draft will be the “Start-Up List” of categories which has been drafted by WHO/HQ to initiate the editing process. This list includes all the proposals received to revise the existing ICD-10 as well as the input from ICD national modifications. During alpha drafting, detailed structured definitions will be added to these ICD categories according to a common model. In the iCAMP, participants will review the proposed classification structure, and start filling in the content model: i.e. they will define the diseases according to a common template which identifies the parameters and corresponding values for each of these parameters. Discussions will clarify and improve the content model, value sets, workflows and the overall revision process. During this structured exercise, the iCAT will be pilot tested mainly by the TAG Managing Editors and classification experts.

TAG Managing Editors will assume three different roles: (a) proposal generator, (b) reviewer, and (c) managing editor. Thus, they will be learning-by-doing the details of different contributor roles and testing whether the collaborative platform is fit for the intended purposes of the revision process. Classification Experts will examine the start up list for its completeness, accuracy, conformance with national adaptations and specialty adaptations as well as its relevance for intended use cases. They will also start working on the compilation of the coding rules and instructions (Volume II) and index (Volume III). Informatics experts will assist in tooling and workflows to ensure effective interactions between the proposal generators, managing editors and Topic Advisory Groups as well as other experts. They will also work on the multilingual aspects of the tooling and the products.

ICD Revision is posting iCamp YouTube videos on WHO ICD11 Channel

 

WHO ICD Revision: iCAMP Day 1

Day 1 | 22 September 2009 | 5.23 mins

“First day of the World Health Organization’s International Classification of Diseases (ICD) Revision iCamp Meeting. This meeting will discuss the Collaborative Authoring Tool (iCAT) that will be used to revise the ICD towards its 11th Edition.”

 
WHO ICD Revision: iCAMP Day 2

Day 2 | 23 September 2009 | 4.39 mins

“Second day of the World Health Organization’s International Classification of Diseases (ICD) Revision iCamp Meeting. This meeting will discuss the Collaborative Authoring Tool (iCAT) that will be used to revise the ICD towards its 11th Edition.”

 
WHO ICD Revision: iCAMP Day 3

Day 3 | 24 September 2009 | 3.46 mins

“Third day of the World Health Organization’s International Classification of Diseases (ICD) Revision iCamp Meeting. This meeting will discuss the Collaborative Authoring Tool (iCAT) that will be used to revise the ICD towards its 11th Edition.”

 
WHO ICD Revision: iCAMP Day 4

Day 4 | 25 September 2009 | 3.57 mins

“Fourth day of the World Health Organization’s International Classification of Diseases (ICD) Revision iCamp Meeting. This meeting will discuss the Collaborative Authoring Tool (iCAT) that will be used to revise the ICD towards its 11th Edition.”

Week Two videos at: ICD-11 iCAMP on YouTube: Week Two

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Related material:

June 2009 PowerPoint presentation

Robert Jakob, Medical Officer, Classifications and Terminologies, WHO Geneva
Slides only, no audio [PDF format 1.3 MB]: Overview of ICD Revision towards ICD-11, includes Timelines for overall revision process and Alpha Draft Calendar; illustrates sample textual definition

April 2008 PowerPoint presentation

Christopher Chute, MD, Mayo Clinic bioinformatics specialist and ICD Revision Steering Group Chair
Audio and slides [31 mins plus question session]: ICD-11 Revision Update, Overview for the NCBO (National Center for Biomedical Ontology) of development process towards ICD-11 using wiki-like collaborative authoring tools (iCAT)

http://www.who.int/mental_health/evidence/icd_advisory_group_december_08_summary.pdf

Summary Report: 4th Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders (1-2 December 2008)