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

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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…

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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

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  

Recent posts on Dx Revision Watch site around DSM-5 second public review

Recent posts on Dx Revision Watch site around DSM-5 second public review

Shortlink: http://wp.me/p5foE-3j7

A number of posts have been published recently on Dx Revision Watch, sister site to ME agenda, around the DSM-5 public review, so I am providing an Index:

5 May 2011  Post #73: http://wp.me/pKrrB-12k

American Psychiatric Association (APA) announces second public review of DSM-5 draft criteria and structure

Post announcing launch of second DSM-5 public review period with links to DSM-5 Development site and to media coverage.

6 May 2011  Post #74: http://wp.me/pKrrB-12x

APA News Release 4 May 2011: New Framework Proposed for Manual of Mental Disorders

Copy of APA News Release No. 11-27 announcing the posting on 4 May of revised draft criteria for DSM-5 on the DSM-5 Development website and a second public review period running from May to June 15.

8 May 2011  Post #75: http://wp.me/pKrrB-12P

What are the latest proposals for DSM-5 “Somatic Symptom Disorders” categories and why are they problematic? (Part 1)

Part 1 of this report is a Q & A addressing some of the queries that have been raised with me around the DSM-5 public review process. Includes table comparing “Current DSM-IV Codes and Categories for Somatoform Disorders and ICD-10 Equivalents”. Also includes a screenshot from Chapter 5 (V) Somatoform Disorders (the F codes) F45 – F48.0 (as displaying in the iCAT Alpha Drafting platform in November 2010; this drafting platform has since been replaced by another public Alpha drafting browser launched on 17 May 2011 – see Post #81: ICD-11 Alpha Drafting platform launched 17 May (public version): http://wp.me/pKrrB-16N).

10 May 2011  Post #77: http://wp.me/pKrrB-13z

What are the latest proposals for DSM-5 “Somatic Symptom Disorders” categories and why are they problematic? (Part 2)

In Part 2 of this report, I set out the latest proposals for draft criteria (dated 14 April 2011) from the DSM-5 Somatic Symptom Disorders Work Group, as published on the DSM-5 Development website, on 4 May.

12 May 2011  Post #78: http://wp.me/pKrrB-15q

Registering to submit comment in the second DSM-5 public review of draft criteria

Information on registering for and submitting comment in the second DSM-5 public review.

18 May 2011  Post #80: http://wp.me/pKrrB-15X

What are the latest proposals for DSM-5 “Somatic Symptom Disorders” categories and why are they problematic? (Part 3)

In Part 3 of this report, I posted extracts from “Disorders Description”, the first of the two key PDF documents that accompany the revised proposals, highlighting passages in yellow to indicate why ME and CFS patient representation organizations, professionals and advocates need to register their concerns via this second public review.

22 May 2011   Post #82: http://wp.me/pKrrB-16B

What are the latest proposals for DSM-5 “Somatic Symptom Disorders” categories and why are they problematic? (Part 4)

In Part 4 of this report, I posted the complete text of the key “Rationale” document that accompanies the draft proposals of the Somatic Symptom Disorders Work Group, omitting several pages of references to published and unpublished research papers.

22 May 2011   Post #83: http://wp.me/pKrrB-12d

Call for Action – Second DSM-5 public comment period closes June 15

Sets out why patients, patient organizations, advocates, clinicians, allied health professionals, lawyers and other professional end users need to review the proposals of the Somatic Symptom Disorders Work Group and submit responses. Includes copy of post in Word .doc and PDF formats.

29 May 2011   Post #85: http://wp.me/pKrrB-19o 

Submissions to the first DSM-5 stakeholder review (February to 20 April 2010)

Full copy of the submission made in last year’s DSM-5 public review, by Kenneth Casanova, Board member and past President, Massachusetts CFIDS/ME & FM Association.

29 May 2011   Post #86: http://wp.me/pKrrB-19G

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

2 June 2011   Post #87: http://wp.me/pKrrB-1a1

Action for M.E. publishes news item on DSM-5

Submissions for the 2010 public review are collated here: http://wp.me/PKrrB-AQ

Second DSM-5 public comment period closes 15 June: Final Call for Action

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

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

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

[Update: On June 1, Action for M.E. published a news item on DSM-5 confirming that it does intend to submit a response.]

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”.

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

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
http://dxrevisionwatch.wordpress.com