Next CFSAC meeting, Tuesday 8 and Wednesday 9 November (US)

October 18, 2011 by

Next CFSAC meeting, Tuesday 8 and Wednesday 9 November (US)

Post #101 Shortlink: http://wp.me/pKrrB-1gZ

Update @ October 19, 2011

An expanded version of the email I received from Mr Emmett Nixon on October 14 has now been posted on the CFSAC site at http://www.hhs.gov/advcomcfs/notices/n101811.html which includes the following:

“We will provide a video recording of the meeting on the CFSAC webpage, http://www.hhs.gov/advcomcfs, which will be posted within one week of the meeting. This recording will be compliant with Section 508 of the Rehabilitation Act and will include captions.”

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

Fall CFSAC meeting

The Federal Notice announcing dates for the Fall Chronic Fatigue Syndrome Advisory Committee (CFSAC) meeting was issued on October 5, 2011 and can be read here Federal Notice. At the time of publishing, an agenda for this meeting has yet to be released. I will update when the agenda has been published.

Custom TinyURL: http://tinyurl.com/November2011CFSAC

The two day meeting will be held on Tuesday, November 8, 2011 and Wednesday, November 9, 2011 at a new venue – the Holiday Inn Capitol, Columbia Room, 550 C Street, SW., Washington, DC.

Since May 2009, the entire meeting proceedings have been streamed as live video with videocasts posted online a few days after the meeting has closed. For the November meeting, CFSAC has stated that only a live audio feed will be provided rather than real-time visuals and auto subtitling and that a high quality video will be provided at a later date.

The Federal Notice can be read below and beneath that, a clarification received on October 14, from Mr Emmett Nixon (HHS/OAHS), CFSAC Support Team.

Meeting of the Chronic Fatigue Syndrome Advisory Committee

A Notice by the Health and Human Services Department on 10/05/2011

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.

Table of Contents

DATES:
ADDRESSES:
FOR FURTHER INFORMATION CONTACT:
SUPPLEMENTARY INFORMATION:

DATES:

The meeting will be held on Tuesday, November 8, 2011 and Wednesday, November 9, 2011. The meeting will be held from 9 a.m. to 5 p.m. on November 8, 2011, and 9 a.m. to 4:30 p.m. on November 9, 2011.

ADDRESSES:

Holiday Inn Capitol; Columbia Room; 550 C Street, SW., Washington, DC 20024; Hotel (202-479-4000).

FOR FURTHER INFORMATION CONTACT:

Nancy C. Lee, MD; Designated Federal Officer, 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 recorded and archived for on-demand viewing through the CFSAC Web site. It will be available by audio on both days and the call-in numbers will be posted on the CFSAC Web site.

Public attendance at the meeting is open. 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 on both days of the meeting; pre-registration for oral testimony is required. Individuals who wish to address the Committee during the public comment session must pre-register by Wednesday, October 26, 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. Priority will be given to individuals who have not presented public comment at previous CFSAC meetings. 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 Wednesday, October 26, 2011. If you wish to remain anonymous, please notify the CFSAC support team staff upon submission of your materials to cfsac@hhs.gov.

If you do not submit your written testimony by the close of business Wednesday, October 26, 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.

Individuals who do not provide public comment at the meeting, but who wish to have printed material distributed to CFSAC members for review should submit, at a minimum, one copy of the material to the Designated Federal Officer at cfsac@hhs.gov prior to close of business on Wednesday, October 26, 2011. Submitted documents should be limited to five typewritten pages. If you wish to remain anonymous, please notify the CFSAC support team staff upon submitting 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; this material will be 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 personal 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: September 30, 2011.

Nancy C. Lee,

Designated Federal Officer, Chronic Fatigue Syndrome Advisory Committee.

[FR Doc. 2011-25739 Filed 10-4-11; 8:45 am]

On October 14, I received the following clarifications from Mr Emmett Nixon, (HHS/OAHS) CFSAC Support Team, in response to queries first raised with Dr Nancy Lee, on October 11, concerning the arrangements for the recording and streaming of this meeting and the rationale behind the change of venue.

Mr Nixon’s response (October 14, 2011):

“We have heard concerns about changes we have made in the venue and the format of the upcoming 2011 November Chronic Fatigue Syndrome Advisory Committee meeting. Below we provide additional details about the meeting.

“We are working diligently to address major shifts in budget restrictions and protecting the personal safety of the public attending the meeting. We have moved the Fall CFSAC meeting to the Holiday Inn 550 C. St. SW, Columbia Room, Washington, D.C. 20024. This change was made because the HHS Humphrey Building Room 800 cannot accommodate more than 50 persons, and we are required to escort all persons attending the meeting due to security measures in place. The Columbia room at the Holiday inn holds a maximum of 300 people and provides an opportunity for the public to move freely about the hotel, rest in their rooms and use open hotel areas including the hotel cafeteria and restaurant. HHS will continue to provide a quiet area in the rear of the Columbia room to accommodate those needing a place to rest. HHS will not provide any medical services.

“There will be a live audio link to the two day meeting, which allows listeners to hear the entire meeting in real time. Due to budgetary considerations, we are unable to provide a live-video cast as previously arranged. We will provide a video recording of the meeting on the CFSAC webpage http://www.hhs.gov/advcomcfs/ . This recording will provide a higher quality video at substantially lower cost.

“Time slots for public testimony will be available on a first-come, first-served basis and limited to five minutes per speaker. Priority will be given to individuals who have not given public testimony in previous meetings. Three hours have been allotted for public testimony. As before, we will accommodate persons who want to provide their testimony by telephone.

“The CFSAC Support Team”

On October 17, I wrote again to Mr Nixon, CC Dr Nancy Lee and Dr Chris Snell, Chair, CFSAC Committee, requesting that the decision not to provide live video streaming be reviewed, citing the issue of accessability to a public meeting by a patient group with disabilities, sensory processing difficulties and cognitive impairment and that a precedent had been set in May 2009 when video streaming was introduced for these meetings, which are viewed live not just in the US, but internationally.

In raising this issue with CFSAC Support Team, I have presented my concerns as an individual and have no connection with any other initiatives or approaches that might be being made to the Committee in respect of similar concerns over the arrangements for this November meeting.

Related material

Minutes of May 10-11 2011 CFSAC meeting (Discussion of coding of CFS for ICD-10-CM)

Filed under American Psychiatric Association (APA), CFSAC meetings, DSM revision process, DSM-5, DSM-5 draft proposals, DSM-5 in the media, ICD-10, ICD-10-CM, Somatic Symptom Disorder, WHO (World Health Organization)

Minutes of May 10-11 2011 CFSAC meeting (Discussion of coding of CFS for ICD-10-CM)

October 18, 2011 by

Minutes of May 10-11 2011 CFSAC meeting (Discussion of coding of CFS for ICD-10-CM)

Post #100 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]

Filed under American Psychiatric Association (APA), CFSAC meetings, Clinical Modification, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, ICD-10, ICD-10-CM, ICD-11 Alpha Draft, Somatic Symptom Disorder, Somatoform Disorders

Position statement on proposed coding of CFS in ICD-10-CM

September 25, 2011 by

Position statement on proposed coding of CFS in ICD-10-CM

Post #99 Shortlink: http://wp.me/pKrrB-1gh

25 September 2011

Since I continue to be misrepresented on at least one platform I am reluctantly publishing a public position statement.

ME agenda is the name of one of several WordPress sites that I own. The site name was registered with WordPress in 2007. ME agenda is also the username I use on Facebook, Twitter and on a number of other internet platforms.

Within the last few days, ME agenda has several times been referred to as “a group” on Phoenix Rising forum and elsewhere. I have already clarified that ME agenda is not a “group” nor any kind of organisation.

On the Disclaimer page of my Dx Revision Watch website it states:

“Dx Revision Watch is not an organisation.

“This site has no connection with and is not endorsed by the American Psychiatric Association (APA), American Psychiatric Publishing Inc., World Health Organisation (WHO) or any other organisation, institution, corporation or company.

“This site has no affiliations with any commercial or not-for-profit organisation. The site operates independently of any patient or advocacy organisation or group.

“This site does not accept advertising, sponsorship, funding or donations and has no commercial links with any organisation, institution, corporation, company or individual.”

On my ME agenda website Disclaimer page it also states:

“ME agenda is not an organisation.

“This site has no connection with and is not endorsed by any organisation, institution, corporation or company. The site has no affiliations with any commercial or not-for-profit organisation and operates independently of any patient or advocacy organisation or group.

“This site does not accept advertising, sponsorship, funding or donations and has no commercial links with any organisation, institution, corporation, company or individual.”

So ME agenda is not “a group”; does not function as “a group” nor as any form of organisation, and the name ME agenda and my websites are associated only with one individual – myself.

The advocacy work that I do under my own name and in association with the name ME agenda is undertaken as an individual with an interest in a specific health area, as a primary carer of a young adult. I do not claim a mandate to represent others and the views and opinions I hold are the views and opinions of a single individual.

I therefore request that neither I nor ME agenda nor my websites are referred to on any platform as “a group”, since this is erroneous and misrepresents me.

It has also been misstated on Phoenix Rising forum and elsewhere, that I am “trying to get CFS reclassified as ME.”

This is not the case and again, misrepresents my position.  My position is this:

I consider as an individual, not as any form of “group”, since I am not any form of “group”:

that it will hurt patients if Chronic fatigue syndrome is coded in ICD-10-CM under Chapter 18, the chapter for “Symptoms, signs and ill-defined conditions”, under “R53.82 Chronic fatigue, unspecified > Chronic fatigue syndrome NOS”;

that Chronic fatigue syndrome should be coded to the “G93” parent class, in line with ICD-10, ICD-10-CA (Canada) and ICD-10-GM (Germany), and in line with ICD-11 proposals that Chronic fatigue syndrome should be classified within Chapter 6: Diseases of the nervous system;

that classifying Chronic fatigue syndrome under the Chapter 18 “R” codes, in ICD-10-CM, will render patients more vulnerable to the proposals of the DSM-5 “Somatic Symptom Disorders” workgroup.

These are views shared by other advocates, patients and carers, internationally, by the US CFSAC Committee (the Chronic Fatigue Syndrome Advisory Committee that provides advice and recommendations to the Secretary of Health and Human Services) and by a number of US 501(c)(3) registered patient advocacy organisations.

At no time have I stated or implied that I am “trying to get CFS reclassified as ME”.

It should also be noted that I have had no involvement in or input into the initiative of the US Coalition4ME/CFS to make representations to the NCHS Committee responsible for updates to the US specific ICD-9-CM and development of ICD-10-CM, which replaces ICD-9-CM in October 2013.

I hope this makes my position clear and I trust that there will be no future misrepresentation of my views or my actions on any platform.

Discussion of the issue of the long-standing proposals for the coding of Chronic fatigue syndrome in ICD-10-CM was on the agenda of the meeting of the ICD-9-CM Coordination and Maintenance Committee which took place on September 14.

An audio of this meeting and PDFs of meeting materials can be accessed from this page on the CDC website:

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

These materials and links and related ICD-10-CM coding issue material will be added to this site in due course.

Suzy Chapman
_____________________

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

Filed under American Psychiatric Association (APA), CFSAC meetings, Clinical Modification, DSM revision process, DSM-5, DSM-5 draft proposals, ICD-10, ICD-10-CM, ICD-11, ICD-11 Alpha Draft, Somatic Symptom Disorder

Minutes: Chronic Fatigue Syndrome Advisory Committee (CFSAC) Spring meeting: May 10 – 11

July 2, 2011 by

Minutes: Chronic Fatigue Syndrome Advisory Committee (CFSAC) Spring meeting: May 10 – 11

Post #95 Shortlink: http://wp.me/pKrrB-1dP

“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.”

 

The twentieth meeting of CFSAC Committee was held in Washington, DC, over two days in May.

Minutes for the proceedings on Day One (May 10) are now published on the CFSAC website. I will update this post when Minutes for Day Two (May 11) and the Recommendations resulting out of this meeting are also published.

Chronic Fatigue Syndrome Advisory Committee (CFSAC)

Meeting May 10-11, 2011

Documents

CFSAC website  

Agenda CFSAC Meeting May 10 – 11  

Presentations and Public Testimonies

Videocasts Day One and Two

Meeting background documents

Recommendations [not yet published]

Minutes Day One (May 10)

Minutes Day Two (May 10) [not yet published]

Open in PDF format: CFSAC Minutes 10 May 2011

43 Pages in PDF format

The Twentieth Meeting of THE CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE US DEPARTMENT OF HEALTH AND HUMAN SERVICES

Hubert H. Humphrey Building, Room 712E, 200 Independence Avenue, SW

Washington, DC 20101

Tuesday, May 10, 2011 – 9:00 am to 5:00 pm

Discussion of concerns around the long-standing proposals for the coding of Chronic Fatigue Syndrome in the forthcoming US specific “Clinical Modification” of ICD-10, known as “ICD-10-CM”, had been tabled on the agenda at 1.15pm on Day One of  the meeting. 

ICD-10-CM has been under development for many years. A public comment period ran from December 1997 through February 1998.

In 2001, the CDC were recommending that Postviral fatigue syndrome, Benign myalgic encephalomyelitis and Chronic Fatigue Syndrome should all be classified within Chapter 6 Diseases of the nervous system at G93.3, in line with the international ICD-10, from which ICD-10-CM was being adapted for US use.

By 2007, the proposal was (and still stands) that Postviral fatigue syndrome and Benign myalgic encephalomyelitis would be classified in Chapter 6 at G93.3, but that Chronic Fatigue Syndrome would be retained in the R codes (which will be Chapter 18 in ICD-10-CM) and coded under R53 Malaise and fatigue > R53.82 Chronic fatigue, unspecified” > chronic fatigue syndrome NOS, Excludes1: postviral fatigue syndrome (G93.3).

The history of the coding of PVFS, (B)ME and Chronic fatigue syndrome in ICD to 2001 is set out in this CDC document: http://www.co-cure.org/ICD_code.pdf

At the May 10 CFSAC meeting, around 50 minutes was given over to discussion of this agenda item which resulted in a motion proposing a new Recommendation to HHS that was unanimously voted in favour of by the committee.

 

As I have a particular interest in this issue, I have interspersed this section of the Minutes with notes addressing a number of errors and misunderstandings. My comments are inserted in blue, bold.

As these notes are inserted into official Minutes I give no permission to re-publish as both the formatting and the integrity of an official document will be lost – so permission to link to this post only.

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

Page 27:

LUNCH

The Chronic Fatigue Syndrome Advisory Committee recessed for lunch for one hour.

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

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.

Chronic fatigue syndrome is not being “reclassified” as such for ICD-10-CM, but being proposed to be retained in the R codes, as a legacy of ICD-9-CM, rather than follow international ICD-10.

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 for the 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.

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

PDF of Dr Jones’ background document here: ICD-related questions from CFSAC for May 2011 meeting
http://www.hhs.gov/advcomcfs/meetings/presentations/icd_ques201105mtng.pdf

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 [sic]) under a G-code, being G93.3 or diseases of the nervous system.

For ICD-11, the proposal is to classify all three terms within Chapter 6 Diseases of the nervous system but these categories may not retain the familiar “G93.3” code.

For ICD-11, the parent class “G93 Other disorders of brain” is proposed to be removed (this will affect many categories classified under or indexed to a code that is currently a child to the G93 parent class in ICD-10).

For ICD-11, categories within Chapter 6 Diseases of the nervous system are being reorganised and different codes have been assigned to Chapter 6 categories to those used in ICD-10. “Chronic fatigue syndrome” is proposed to be an ICD Title code and is currently assigned the code “06L00” in the ICD-11 Alpha Draft, under new parent class “06L Other disorders of the nervous system”.

For ICD-11, “Benign myalgic encephalomyelitis” is specified as an Inclusion term to “06L00 Chronic fatigue syndrome”. A change of hierarchy is recorded in the iCAT Alpha drafting platform for “Postviral fatigue syndrome” and “Chronic fatigue syndrome”.

See Dx Revision Watch report: ICD-11 Alpha Drafting platform launched 17 May (public version) for screenshots from the latest version of the ICD-11 Alpha Draft: http://wp.me/pKrrB-16N

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

That last sentence does not make sense. Retaining CFS under the R codes would exclude it from the Chapter 6, G93.3 classification.

Proposals for ICD-10-CM have “chronic fatigue syndrome NOS (R53.82)” specified as an Exclusion to “G93.3 Postviral fatigue syndrome > Benign myalgic encephalomyelitis”.

Proposals for ICD-10-CM have “Postviral fatigue syndrome (G93.3)” specified as an Exclusion to the “R53 Malaise and fatigue > R53.82 Chronic fatigue, unspecified” > Chronic fatigue syndrome NOS codes.

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.

Previous CFSAC recommendations for ICD-10-CM had read:

May 2010 CFSAC recommendation: 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).

August 2005 CFSAC recommendation: Recommendation 10: We would encourage the classification of CFS as a “Nervous System Disease,” as worded in the ICD-10 G93.3.

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].

Should be “Complex Somatic Symptom Disorder”, not as above.

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 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.

Should be “pain disorder” not “panic disorder”.

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.

(The justification given by CDC for not mirroring ICD-10 is this: If the clinician feels there is enough evidence to attribute the patient’s illness to a viral illness, they can code at G93.3; if not, they can code at R53.82 Chronic fatigue syndrome NOS. Testing for a viral illness is not required to assign a code, the coding would be based on the clinician’s judgment.)

Dr. Jason restated his recommendation.

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.

A link has been placed on the CFSAC site for the CDC page for information on meetings of the ICD-9-CM Coordination and Maintenance Committee  

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.

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.

[Discussion of this agenda item ends.]

As these are my notes inserted into an extract from official Minutes, no permission to republish. The Shortlink to this post is http://wp.me/pKrrB-1dP. The PDF of the Minutes for Day One (May 10) is here: CFSAC Minutes 10 May 2011

Related material:

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

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

[3] Post: US “Clinical Modification” ICD-10-CM. Article clarifying possible confusion between ICD-10, ICD-11 and the forthcoming US Clinical Modification, ICD-10-CM: http://wp.me/pKrrB-Ka

[4] Chronic Fatigue Syndrome Advisory Committee (CFSAC). The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the Secretary of Health and Human Services via the Assistant Secretary for Health of the U.S. Minutes of meetings, Recommendations and meeting videocasts:
http://www.hhs.gov/advcomcfs/meetings/index.html

Filed under CFSAC meetings, Clinical Modification, Criticism of DSM-V, DSM-5, DSM revision process, DSM-5 draft proposals, Functional Somatic Syndrome (FSS), ICD-10, ICD-10-CM, ICD-11, ICD-11 Alpha Draft, MUS, Somatic Symptom Disorder, Somatoform Disorders

Final Call for Action by UK patient orgs – Second DSM-5 public comment period closes 15 June

May 29, 2011 by

Final Call for Action by UK patient orgs – Second DSM-5 public comment period closes 15 June

Post #86 Shortlink: http://wp.me/pKrrB-19G

This communication has been sent to the following organizations:

Action for M.E.; The ME Association; AYME; The Young ME Sufferers Trust; The 25% ME Group; RiME; Invest in ME; BRAME; ME Research UK; Mrs Sue Waddle

A version of this communication will be posted on Co-Cure and selected platforms.

Final Call for Action by UK patient organizations

 

Second DSM-5 public comment period closes 15 June

29 May 2011

The above organizations were alerted to this second public review period on 5 May, the day after revised criteria were posted on the American Psychiatric Association’s DSM-5 Development website.

To date, not one patient organization in the UK has confirmed to me that they intend to submit feedback, this year. Please take some time to review these proposals and prepare a submission or consider submitting a joint response with another UK patient organization.

The American Psychiatric Association (APA) DSM-5 Task Force is again accepting public comment on the latest proposals for the revision of DSM diagnostic criteria for psychiatric disorders.

The deadline for this second stakeholder feedback period is June 15 – less than three weeks away!

Is this a US specific issue?

No. UK and international input is required from patient organizations.

The DSM-5 “Somatic Symptom Disorders” Work Group has responsibility for the revision of the existing DSM-IV “Somatoform Disorders” categories. Two UK Professors of psychological medicine and research, Professor Michael Sharpe and Professor Francis Creed, are members of the Somatic Symptom Disorders Work Group.

The Diagnostic and Statistical Manual of Mental Disorders is the primary diagnostic system in the US for defining mental disorders and is used to varying extent in other countries. The next edition of the manual is scheduled for publication in 2013 and will inform health care providers and policy makers for many years to come. DSM-5 will shape international research, influence literature in the fields of psychiatry and psychosomatics and inform perceptions of patients’ medical needs throughout the world.

All UK patient organizations need to submit responses in this second review, even if they submitted last year. The latest key documents that expand on the proposals are attached for ease of reference. (Note: These documents have been revised several times since last year’s public review. Yellow highlighting has been applied by the Work Group to indicate edits and revisions between these latest versions and the texts as they had stood, earlier this year.)

What is being proposed?

The DSM-5 “Somatic Symptom Disorders” Work Group is recommending renaming the “Somatoform Disorders” section to “Somatic Symptom Disorders” and combining the existing categories – “Somatoform Disorders”, “Psychological Factors Affecting Medical Condition (PFAMC)” and possibly “Factitious Disorders”, into one group.

(“Somatic” means “bodily” or “of the body”.)

The Work Group also proposes combining “Somatization Disorder”, “Hypochondriasis”, “Undifferentiated Somatoform Disorder” and “Pain Disorder” under a new category entitled “Complex Somatic Symptom Disorder” (CSSD). There is also a “Simple or Abridged Somatic Symptom Disorder” (SSSD) and a proposal to rename “Conversion Disorder” to “Functional Neurological Disorder”.

[Content removed as criteria for draft two superceded by criteria for draft three.]

If the various proposals of the Somatic Symptom Disorders Work Group were approved, there are considerable concerns that patients with a diagnosis of CFS, ME or PVFS, or awaiting diagnosis, would be vulnerable to the application of an additional “bolt-on” mental health diagnosis of a Somatic Symptom Disorder like “CSSD”, “SSSD” or “PFAMD”, or of misdiagnosis with a Somatic Symptom Disorder.

Because the APA and the WHO have a joint commitment to strive for harmonization between category names, glossary descriptions and criteria for DSM-5 and the corresponding categories in Chapter 5 of the forthcoming ICD-11, there could be implications for the revision of the “Somatoform Disorders” section of ICD-10 and therefore implications for UK patients – both adults and children.

Where can I find the full criteria for “CSSD”, “PFAMC” and other proposed categories?

Proposed criteria are set out on the DSM-5 Development site here: http://tinyurl.com/Somatic-Symptom-Disorders

The CSSD criteria are here: http://tinyurl.com/DSM-5-CSSD

There are two key PDF documents, “Disorders Descriptions” and “Rationale”, which expand on the Work Group’s proposals (attached for your convenience)

             Disorders Description   Key Document One: “Somatic Symptom Disorders”

             Rationale Document     Key Document Two: “Justification of Criteria — Somatic Symptoms”

 

Which patient groups might be hurt by these proposals?

The Chronic Fatigue Syndrome Advisory Committee (CFSAC) provides advice and recommendations to the US Secretary of Health and Human Services (HHS). On Day One of the May 10-11 CFSAC meeting, CFSAC Committee discussed the implications of these proposals for CFS, ME and Fibromyalgia patients as part of the agenda item around concerns for the proposed coding of CFS for the forthcoming ICD-10-CM.

If the Work Group’s proposals gain DSM Task Force approval, all medical diseases, whether “established general medical conditions or disorders”, like diabetes or heart disease, or conditions presenting with “somatic symptoms of unclear etiology” will have the potential for an additional diagnosis of a “somatic symptom disorder” – if the clinician considers that the patient’s response to their bodily symptoms and concerns about their health or the perception of their level of disability is “disproportionate”, or their coping styles, “maladaptive.”

But as discussed by CFSAC Committee members, patients with CFS, ME, Fibromyalgia and IBS (the so-called “Functional somatic syndromes”) may be especially vulnerable to the highly subjective criteria and difficult to measure concepts such as “disproportionate distress and disability”, “catastrophising”, “health-related anxiety” and “[appraising] bodily symptoms as unduly threatening, harmful, or troublesome.”

In a 2009 Editorial on the progress of the Work Group, the Work Group Chair wrote that by doing away with the “controversial concept of medically unexplained”, their proposed classification might diminish “the dichotomy, inherent in the ‘Somatoform’ section of DSM-IV, between disorders based on medically unexplained symptoms and patients with organic disease.” The conceptual framework the Work Group proposes:

“…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.”

In its latest proposals, the Work Group writes:

“…Having somatic symptoms of unclear etiology is not in itself sufficient to make this diagnosis. Some patients, for instance with irritable bowel syndrome or fibromyalgia would not necessarily qualify for a somatic symptom disorder diagnosis. Conversely, having somatic symptoms of an established disorder (e.g. diabetes) does not exclude these diagnoses if the criteria are otherwise met.”

“…The symptoms may or may not be associated with a known medical condition. Symptoms may be specific (such as localized pain) or relatively non-specific (e.g. fatigue). The symptoms sometimes represent normal bodily sensations (e.g., orthostatic dizziness), or discomfort that does not generally signify serious disease…”

“…Patients with this diagnosis tend to have very high levels of health-related anxiety. They appraise their bodily symptoms as unduly threatening, harmful, or troublesome and often fear the worst about their health. Even when there is evidence to the contrary, they still fear the medical seriousness of their symptoms. Health concerns may assume a central role in the individual’s life, becoming a feature of his/her identity and dominating interpersonal relationships.”

These proposals could result in misdiagnosis of a mental health disorder or the misapplication of an additional diagnosis of a mental health disorder in patients with CFS and ME. There may be considerable implications for these highly subjective criteria for the diagnoses assigned to patients, the provision of social care, the payment of employment, medical and disability insurance, the types of treatment and testing insurers and health care providers are prepared to fund, and the length of time for which insurers are prepared to pay out.

Dual-diagnosis of a “general medical condition” or a so-called “functional somatic syndrome” plus a “bolt-on” diagnosis of a “Somatic symptom disorder” may bring thousands more patients, potentially, under a mental health banner where they may be subject to inappropriate treatments, psychiatric services, antidepressants and behavioural therapies such as CBT, for the “modification of dysfunctional and maladaptive beliefs about symptoms and disease, and behavioral techniques to alter illness and sick role behaviors and promote more effective coping [with their somatic symptoms].”

Who should submit comment on these proposals?

All stakeholders are permitted to submit comment and the views of patients, carers, families and advocates are important.

But evidence-based submissions from the perspective of informed medical professionals – clinicians, psychiatrists, researchers, allied health professionals, lawyers and other professional end users are likely to have more influence. Patient organizations also need to submit comment.

Where can I read last year’s submissions?

Copies of international patient organization submissions for the first DSM-5 public and stakeholder review are collated on this page of my site, together with selected patient and advocate submissions:

DSM-5 Submissions to the 2010 review: http://wp.me/PKrrB-AQ

How to comment:

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

More information on registration and preparing submissions here: http://tinyurl.com/DSM-5-register-to-comment

This is the last alert I shall be sending out. I hope all UK patient organisations will take this opportunity to submit their concerns.

Remember, the deadline is June 15.

Thank you.

Suzy Chapman
https://dxrevisionwatch.wordpress.com

Filed under American Psychiatric Association (APA), Criticism of DSM-V, DSM-5, DSM revision process, DSM-5, DSM-5 consultation, DSM-5 draft proposals, DSM-V, ICD-10-CM, ICD-11, MUS, Somatic Symptom Disorder, Somatoform Disorders, WHO (World Health Organization)

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

May 10, 2011 by

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

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

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

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

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

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

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

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

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

The archived videocasts have had simultaneous subtitles.

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

ICD-10-CM proposed coding issue

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

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

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

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

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

[…]

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

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

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

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