ME agenda: update on status of this site

ME agenda: update on status of this site

This site was created in June 2007 for ME patients, carers and advocates and provided information, resources and commentary on the political issues affecting the lives of UK Myalgic encephalomyelitis (ME) patients.

In 2009, my primary advocacy focus shifted towards monitoring the development of DSM-5* (published May 2013) and ICD-11 (currently scheduled for presentation to the World Health Assembly in May 2018).

In 2010, I created Dx Revision Watch (originally DSM-5 and ICD-11 Watch) specifically for monitoring the development of these two classification systems.

ME agenda site will remain online for its post archives (Post Index to approximately 980 posts) and for occasional, important information relating specifically to ICD-11, DSM-5 and ICD-10-CM.

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I have a number of other WordPress.com sites:

http://suzychapman.wordpress.com/ status: extension site for Dx Revision Watch for occasional, selected material.

Twenty-six soldiers of lead status: extension site to ME agenda for occasional, selected material.

Read ME UK Events status: archived.

Read ME UK Events was created in March 2008 in response to the considerable concerns surrounding the April 2008 Royal Society of Medicine conference on “Chronic Fatigue Syndrome” and to promote the various protests that were staged.

Suzy Chapman can be contacted via the Dx Revision Watch Contact page

Follow Dx Revision Watch on Twitter @dxrevisionwatch

*DSM; DSM-IV; DSM-IV-TR; DSM-IV-PC; DSM-V; DSM V; DSM-5; DSM 5 are registered trademarks of the American Psychiatric Association

New Twitter address and new domain for Dx Revision Watch

New Twitter address and new domain for Dx Revision Watch

Please note the domain for the sister site, Dx Revision Watch, has changed to

http://dxrevisionwatch.com

Previous links to posts and pages are being mapped across to the new domain but you may like to update Bookmarks and update links to the Home Page on websites and blogs.

The Twitter page associated with both sites has also changed from

http://twitter.com/meagenda

to

http://twitter.com/dxrevisionwatch

@dxrevisionwatch

Recent posts on Dx Revision Watch: ICD-11 Beta draft updates

Recent posts on Dx Revision Watch: ICD-11 Beta draft updates, DSM-5 Development site

Changes to ICD-11 Beta drafting platform: Bodily Distress Disorders (1)

Post #190 Shortlink: http://wp.me/pKrrB-2jB

This report updates on recent changes to the Somatoform Disorders section of the ICD-11 Beta drafting platform.

ICD-11 Beta drafting platform: Update (2):

Neurasthenia, Postviral fatigue syndrome (PVFS), Benign myalgic encephalomyelitis (ME), Chronic fatigue syndrome (CFS), Fibromyalgia (FM), Irritable bowel syndrome (IBS)

Post #193 Shortlink: http://wp.me/pKrrB-2mC

The report in this post updates on current proposals for the ICD-11 Beta drafting platform for revision of the following ICD-10 categories: Neurasthenia, Postviral fatigue syndrome (PVFS), Benign myalgic encephalomyelitis (ME), Chronic fatigue syndrome (CFS), Fibromyalgia (FM) and Irritable bowel syndrome (IBS) for the full version of ICD-11…

ICD-11 Revision Beta drafting process: stakeholder participation

Post #194 Shortlink: http://wp.me/pKrrB-2nw

Changes to content on DSM-5 Development site (1)

Post #189 Shortlink: http://wp.me/pKrrB-2jn

Content embargo

According to American Psychiatric Association’s (APA) recently published, highly restrictive DSM-5 Permissions Policy – following closure of the third and final public review, the content of DSM-5 will be under strict embargo until the manual is published…

Save

US advocate’s Call to action – DSM-5 comments needed by June 15, 2012

US advocate’s Call to action – DSM-5 comments needed by June 15, 2012

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

Patients, patient organizations and professional stakeholders have three weeks left in which to submit comments in the third and final stakeholder review of draft proposals for DSM-5 categories and criteria.

Comment period closes June 15.

US advocate, Mary Dimmock, has prepared a “Call to action”

Call to action – DSM-5 comments needed by June 15, 2012

The Diagnostic and Statistical Manual of Mental Disorders (DSM) is used in the U.S. to categorize mental disorders for patient diagnosis, treatment and insurance. The new version, DSM-5, includes a proposal for Somatic Symptom Disorder (SSD) that will have profound implications for ME/CFS patients. Your input is needed by June 15, 2012 to ensure that the DSM-5 authors understand your concerns…

…SSD can be applied to patients regardless of whether the symptoms are considered to be medically unexplainable or not. Severity is rated by the count and frequency of somatic symptoms. The “Justification for Criteria – Somatic Symptoms”, issued in May 2011, states that CBT, focused on “the identification and modification of dysfunctional and maladaptive beliefs”, is one of the most promising treatments.

Why this matters to ME/CFS patients
A diagnosis of SSD can be “bolted” onto any patient’s diagnosis. All that is required is for the medical practitioner to decide that the patient is excessively concerned with their somatic symptoms and their health. This is done using highly subjective and difficult to measure criteria for which very few independent reliability studies have been undertaken.

For patients with diseases that are poorly understood and misdiagnosed by the medical community, like ME/CFS, this will be disastrous. Once diagnosed inappropriately with SSD, the implications for diagnosis, treatment, disability and insurance will be profound…

Download Mary’s Call to action document here:

Word .docx format DSM-5 Response 2012

Word .doc format DSM-5 Response 2012 (MS 2004)

Update One from Dx Revision Watch January, 2012

Update One from Dx Revision Watch January, 2012

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

18 January 2012

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

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

This information is outdated.

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

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

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

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

DSM-5 Reform iPetition for professionals:

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

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

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

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

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

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

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

References:

1] DSM-5 Development site

2] DSM-5 Timeline

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

4] Somatic Symptom Disorders

Complex Somatic Symptom Disorder (CSSD) criteria

Simple Somatic Symptom Disorder (SSSD) criteria

Key documents:

       Disorders Description

       Rationale/Validity Propositions

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

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

Suzy Chapman
_____________________

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

British Psychological Society calls on members to sign petition for independent review of DSM-5 draft proposals

British Psychological Society (BPS) issues statement calling on its members to sign the Coalition for DSM-5 Reform’s petition for independent review of DSM-5 draft proposals

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

An Open Letter and Petition sponsored by the Society for Humanistic Psychology (Division 32 of the American Psychological Association), in alliance with several other American Psychological Association Divisions, has attracted over 8500 signatures since launching on October 22.

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

More than 30 mental health professional bodies are endorsing the Open Letter which is highly critical of many of the draft criteria and categories being proposed for the revision of DSM-IV by the 13 American Psychiatric Association DSM-5 Work Groups.

Alarmed by the potential dangers they see in many of the draft proposals released in May 2011 for a second stakeholder review and comment period, the petition sponsors are inviting mental health professionals and mental health organizations to sign up in support of a six page Open Letter to the DSM-5 Development Task Force.

Of particular concern to the Sponsors are:

(1) The lowering of diagnostic thresholds, which may artificially inflate the prevalence of numerous disorders. By increasing the number of people who qualify for a diagnosis, DSM-5 may lead to the excessive medicalization and stigmatization of normative or transient distress.

(2) The potential consequences of lowered thresholds and new disorder categories on vulnerable populations such as children and the elderly. These populations are already at risk for excessive and inappropriate treatment with medications that have dangerous side effects. We are particularly concerned about the overuse of medications for “Attenuated Psychosis Syndrome,” “Disruptive Mood Dysregulation Disorder,” “Mild Neurocognitive Disorder,” Attention Deficit/Hyperactivity Disorder, and Generalized Anxiety Disorder.

(3) The lack of scientific evidence substantiating many of these new proposals.

The American Psychiatric Association has timelined a third and final stakeholder review for two months in early 2012, with the next version of the Diagnostic and Statistical Manual of Mental Disorders scheduled for publication in May 2013.

When the third and final draft has been published, a notice and links will be posted on my sites with instructions on how to register with the DSM-5 Development site for submitting comment to the Task Force and 13 work groups.

According to Darrel Regier, Vice-Chair of the DSM-5 Task Force, the specific diagnostic categories that received the most feedback in the second public review of draft proposals, earlier this year, were sexual and gender identity disorders, followed closely by somatic symptom disorders and anxiety disorders.

Yesterday, December 13, the British Psychological Society (BPS) issued a statement encouraging its members to read and sign up to the Coalition for DSM-5 Reform’s petition.

Society issues statement in response to DSM-5

The Society has today (13 December 2011) released a statement expressing concerns regarding the proposed revisions of the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association, which is one the main internationally-used classification systems for diagnosis of people with mental health problems in clinical settings and for research trials.

The Society for Humanistic Psychology (Division 32) of the American Psychological Association (APA) has recently published an open letter to the DSM-5 taskforce raising a number of concerns about the draft revisions proposed for DSM-5 and citing a number of issues raised previously by the BPS.

In its statement today, the Society shares the concerns expressed in the open letter from the Society of Humanistic Psychology (Division 32) of the APA and encourages members of the Society to read the letter themselves and consider signing the petition.

David Murphy, Chair of the Society’s Professional Practice Board said:

“The Society recognises that a range of views exist amongst psychologists, and other mental health professionals, regarding the validity and usefulness of diagnostic frameworks in general and the Diagnostic and Statistical Manual of the American Psychiatric Association, in particular.

“However, there is a widespread consensus amongst our members that some of the changes proposed for the new framework could lead to potentially stigmatizing medical labels being inappropriately applied to normal experiences and also to the unnecessary use of potentially harmful interventions.

“We therefore urge the DSM 5 taskforce to consider seriously all the issues that have been raised and we would echo the American Psychological Association’s call for the taskforce to adhere to an open transparent process based on the best available science and in the best interest of the public”.

You can read the Society statement in full online.

Open PDF on the BPS site here: BPS Statement on DSM-5 12.12.11

Or open PDF here, on Dx Revision Watch: BPS statement on DSM-5 12-12-2011

Or read text version below:

British Psychological Society statement on the open letter to the DSM-5 Taskforce

The British Psychological Society recognizes that a range of views exist amongst psychologists, and other mental health professionals, regarding the validity and usefulness of diagnostic frameworks in mental health in general, and the Diagnostic and Statistical Manual (DSM) of the American Psychiatric Association in particular.

The Society for Humanistic Psychology (Division 32) of the American Psychological Association (APA) has recently published an open letter to the DSM-5 taskforce raising a number of concerns about the draft revisions proposed for DSM-5 which has, to date, been endorsed by 12 other APA Divisions.

A major concern raised in the letter is that the proposed revisions include lowering diagnostic thresholds across a range of disorders. It is feared that this could lead to medical explanations being applied to normal experiences, and also to the unnecessary use of potentially harmful interventions.

Particular concern is expressed about the inclusion of a new diagnostic category “Attenuated Psychosis Syndrome”. This proposes to include individuals who are experiencing hallucinations, delusions or disorganized speech “in an attenuated form with intact reality testing” but who do not meet current criteria for a psychotic disorder. The Society shares the concerns expressed in the open letter about the potentially harmful consequences of lowering diagnostic thresholds in general and the questionable validity of this proposed diagnosis in particular.

Another concern raised is about the impact of proposed revisions on vulnerable groups such as children and the elderly. The letter highlights that the proposed new diagnostic category “Mild Neurocognitive Disorder” might be diagnosed in elderly people whose memory decline simply reflects normal ageing. The Society welcomes the use of an  objective psychometric criterion within this particular DSM-5 diagnosis but shares concerns expressed in the letter about potential for misdiagnosis of normal ageing. We would further highlight the importance of valid psychological interpretation of test results since the proposed psychometric threshold encompasses 1 in 8 of the normal population. There is a particular danger that cognitive functioning of people from ethnic minorities is under-represented on psychometric tests. The Society also shares concerns about the potential for children and adolescents to be misdiagnosed with Disruptive Mood Deregulation Disorder.

We also concur that there is a lack of a solid basis in clinical research literature for this disorder and are also concerned about the risk of harm from inappropriate treatment with neuroleptic medication.

The proposals for the revision of the personality disorders section in DSM-5 are described in the open letter as “perplexing”, “complex” and “idiosyncratic”. The Society has welcomed the move to a dimensional-categorical model for personality disorder. However, we have said that this has not been as visible as expected in the draft revisions.

Moreover, we share concerns expressed in the open letter about the inconsistency of the proposed changes and their limited empirical basis.

Finally, the open letter also draws attention to proposals to revise the basic “Definition of a Mental Disorder” and, in particular, a statement proposed by Stein et al that it “reflects an underlying psychobiological dysfunction”. The Society shares concerns about any unsubstantiated shift in emphasis towards biological factors and in particular the entirely unjustified assertion that all mental disorders represent some form of biological dysfunction. We are, however, reassured by the response from the APA task force (4 November 2011) which states that there is no intent “to diminish the importance of environmental and cultural exposure factors” and hope that this will be reflected in the final version.

In conclusion, the British Psychological Society endorses the concerns expressed in the open letter from the Society of Humanistic Psychology (Division 32) of the APA and encourage members to view the letter themselves and consider signing the petition (http://www.ipetitions.com/petition/dsm5/ ). We also urge the DSM 5 taskforce to consider seriously the issues raised therein. These have been now been endorsed by a broad range of experts in mental health, including members of the British Psychological Society and two chairs of previous DSM revision taskforces.

We are, however, encouraged that the DSM taskforce has already responded positively to the open letter and that in their letter (4 November 2011) they emphasized that the manual is “still more than a year away from publication and is continually being refined and reworked”. They commented that “Final decisions about proposed revisions will be made on the basis of field trial data as well on a full consideration of other issues such as those raised by the signatories of the petition.”

In a statement issued on 2 December 2011 the American Psychological Association (APA) called upon the DSM-5 Task Force to “adhere to an open, transparent process based on the best available science and in the best interest of the public”. The British Psychological Society would certainly echo this call.

The final draft of the DSM-5 criteria is due for publication in early 2012 followed by a third, two month, period of public feedback. The Society encourages those members who have relevant expertise to contribute to the on-going process of refinement and improvement of the DSM-5. As a Society we are, as is our counterpart the APA, committed to promoting and disseminating psychological knowledge and, as such, we are keen to ensure that the final version of DSM-5, and other internationally used diagnostic frameworks such as ICD-11, are based on the best available psychological science and will continue to monitor the DSM-5 revision process and contribute further as appropriate.

[Ends]

References:

1] DSM-5 Development site
2] Somatic Symptoms Disorders current proposals
3] DSM-5 Timeline 
4] Coalition for DSM-5 Reform website
5] Petition for mental health professionals can be signed here
6] Dr Allen Frances MD, Chair, DSM-IV Task Force, blogs on DSM-5 on “Psychology Today”
7] Updates and developments on the Coalition for DSM-5 Reform’s petition
8] Media coverage for Coalition for DSM-5 Reform’s petition

Federal Notice of next CFSAC meeting, Tuesday 8 and Wednesday 9 November (US)

Federal Notice of next CFSAC meeting, Tuesday 8 and Wednesday 9 November (US)

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

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

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

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]

Position statement (ICD-10-CM proposed coding issue)

Position statement (ICD-10-CM proposed coding issue)

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

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
_____________________

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

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

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

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

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

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

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

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

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

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

http://wp.me/PKrrB-19a 

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

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

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

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

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

Second DSM-5 public review of draft criteria

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

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

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

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