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Archive for the ‘MUPSS Project’ Category

Medically Unexplained Psychologising of ME (MUPs) by Peter Kemp

Posted by meagenda on November 10, 2009

An essay by Peter Kemp orginally published on Co-Cure

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

 

Medically Unexplained Psychologising of ME (MUPs)

Permission to repost

10 October 2009

In this essay I will explore some psychic phenomena that might be relevant to psychologising of illness.

Generalisations cannot practically be made, MUPs is not just heterogeneous from a psychic viewpoint – it is likely to be individual. So I can only explore my impressions and I hope you will read my theories as falling somewhere between the Origin of Speciousness and A Tale of Two Settees.

Use of some terminology has been unavoidable but I include a few definitions and illustrations as ‘Asides’ that I hope will help make the essay accessible to PWME.

Peter Kemp

Acronyms:

PWME = Person (or People) With ME

MUPs = Medically Unexplained Psychologising of ME

 

Medically Unexplained Psychologising of ME (MUPs)

Aside 1

AN ILLUSTRATION OF ‘PROJECTION’

Jack thinks that it would be very bad to be envious; this might be something his parents taught him. He notices envy in other people and condemns them for being envious. The envy that he so often notices might be real or not, it does not matter because it is HIS envy he is seeing. He is Projecting his envy onto other people to try and hide and control it within himself.

WITHDRAWAL OF PROJECTION

Projection is an unconscious process, people are not aware when they are doing it, but if they can become aware of the true source of a problem there may be an opportunity for growth.

One day Jack says to Jill, ‘I think you are envious of Mary’s little lamb’; and Jill says, ‘actually, I love Mary so much I gave her that lamb. I think you are envious because I get on so well with Mary.’ Jack’s theories fall apart and his projection is laid bare. If he is honest and humble enough he can then discover his own envy and stop projecting it. It may help if Jill points out ‘what’s wrong with being envious anyhow? It is part of how I know what I like and what I want’.

Through this uncomfortable experience Jack stops projecting envy and finds that natural feelings of envy can help him to make decisions about what he wants in life.

———————————————

Projected Fear

PWME represent ‘ideal’ subjects for the projection of all sorts of fears, Fear of losing control, Fear of weakness, Fear of illness, Fear of physical inadequacy, and perhaps worst of all, Fear of fear. For some MUPs I suspect that subtler projections and issues arise, such as Fear of being wrong and Fear of being misunderstood. All these fears have their roots in the psyche and are most troublesome when their origins are unconscious and when strongly denied. This may result in odd behaviour that may nevertheless be easily justified, but the justifications do not reveal the true motives behind the behaviour, instead they contribute to their concealment.

To confront fear it must be acknowledged but if it originates from an intense inner conflict it might be that the ego is not ready to withstand it. In these circumstances an internal struggle is maintained to repress some aspects of a complex in order to protect the ego. Enacting these conflicts in the world is a common way of reinforcing defences and avoids addressing the conflict directly. Unfortunately, this never resolves the issue at its source and means that substitute conflicts must constantly be found. As such projecting Fear may be predisposing and initiating; and because projection is an avoidance strategy, it is likely to be a maintaining factor in MUPs.

Withdrawal of Projection

For some people in whom contact with PWME arouses issues with fear, the psyche may seize this as an opportunity for growth. If someone projects fear onto another they may sometimes be able to compare their projection with the actual person. If discrepancies are found then the projection might start to weaken, then the projector has an opportunity to challenge and eventually withdraw the projection.

For example; a person fearful of losing control might project this onto a PWME; if they then realize that the PWME is actually coping well (with what for many people is a terrifying aspect of disability), the projector may think something like; ‘I thought he was weak, but I could not cope so well with such a loss of control’. This represents a stage of withdrawal of a projection as the projector has discovered that the source of the fear is within himself. Such situations might be considered MUPs based on transient / opportunistic factors; and is I suspect, a very common occurrence. Some MUPs might be able to relate to this if they find they vacillate between impatience and respect towards a PWME. This could be a sign that projections are weakening and the source of fear might be discoverable. Read the rest of this entry »

Posted in Benefits, CBT/GET, Care, Child protection, DSM revision process, Elephant Series DSM-V, ICD revision process, ICD-11, ME in children, MSBP (FII), MUPSS Project, MUS | Comments Off

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

Posted by meagenda on October 30, 2009

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

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

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

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

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

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

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

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

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

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

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

PDF file: ONGOING FB Q and A document. 29.10.09

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

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

—————-

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

In response to this question, on Page 23:

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

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

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

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

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

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

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

Open PDF files here:

CISSD project report 1

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

Conceptual Issues in Somatoform and Similar Disorders

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

Richard Sykes December 2007

CISSD project report 2

Covering letter

The CISSD Project 2003-2007

(Conceptual Issues in Somatoform and Similar Disorders)

Summary

FINAL REPORT OF CO-ORDINATOR   Richard Sykes PhD, CQSW

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

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

 

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

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

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

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

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

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

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

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

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

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

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

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

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

this should read “G93.3″ and “G93.4″.

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

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

 

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

—————–

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

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

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

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

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

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

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

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

Posted in A4e, AfME, Action for M.E., CISSD Project, DSM revision process, Elephant Series DSM-V, Freedom of Information, ICD revision process, ICD-11, MUPSS Project, NICE Judicial Review, PACE Trials, Professor Peter White, WHO (World Health Organization), WHO Collaborating Centre, WHO Somatisation Project, XMRV Retrovirus | Comments Off

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

Posted by meagenda on October 24, 2009

elephant3

Image | belgianchocolate | Creative Commons

Keywords

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

The Elephant in the Room Series Three:

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

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

24 October 2009

 

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

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

A white paper of the EACLPP Medically Unexplained Symptoms study group

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

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

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

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

EACLPP Working group on MUS version 16 Jan 2009

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

Journal of Psychosomatic Research

In Press

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

Abstract: http://tinyurl.com/jpsychoresMUS

doi:10.1016/j.jpsychores.2009.09.004

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

Editorial

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

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

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

Article Outline

Introduction

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

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

Terms suggested as alternatives for “medically unexplained symptoms”

Implications for treatment

Implications for DSM-V and ICD-11

Conclusion

References

Note:

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

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

Michael Sharpe was UK Chair for the CISSD Project.

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

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

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

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

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

 

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

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

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

See section: Psychological factor affecting general medical condition 

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

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

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

 

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

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

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

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

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

Humberto Marin, MD and Javier I. Escobar, MD

According to Escobar and Marin:

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

Table 1

Functional somatic syndromes

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

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

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

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

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

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

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

Posted in CBT, CBT/GET, CISSD Project, Criticism of DSM-V, DSM revision process, Elephant Series DSM-V, ICD revision process, ICD-11, Institute of Psychiatry, MUPSS Project, MUS, Professor Peter White, WHO (World Health Organization), WHO Collaborating Centre, WHO Somatisation Project | Comments Off

Observer: Flagship mental health scheme faces cutbacks 04.10.09

Posted by meagenda on October 6, 2009

On Sunday, the Observer reported on cutbacks faced by Improving Access to Psychological Therapies (Iapt) programme which is failing to meet government tarkets:

The Observer | 4 October 2009

http://www.guardian.co.uk/society/2009/oct/04/mental-health-therapy-cbt-psychiatry

Flagship mental health scheme faces cutbacks

Only 400 therapists have been trained out of the 3,600 needed for the scheme

by Jamie Doward

“A flagship government strategy to train an army of therapists to get the nation off antidepressants and into work could be dramatically scaled back amid claims it is experiencing problems.”

The government claims the Improving Access to Psychological Therapies (Iapt) programme will treat 900,000 people and help about half of them to make a full recovery. It also aims to get 25,000 people suffering from anxiety and depression off sick pay and benefits by 2010/11.

But the Observer understands there are now concerns about whether these targets can be met.”

Read full article here

————————-

Related material

Tories would force jobless to work  |  Sunday Times  |  4 October 2009
http://www.timesonline.co.uk/tol/news/politics/article6860233.ece

Cameron to slash benefit payouts to 500,000 now deemed ‘unfit to work’  |  Times |  5 October 2009 http://www.timesonline.co.uk/tol/news/politics/article6861137.ece 

Iapt documents: http://www.iapt.nhs.uk/publications/

See also: The Elephant in the Room Series Two: More on MUPS

See also: Lords Debate on CBT

Posted in CBT, CBT/GET, DoH, Labour, MUPSS Project, MUS, NHS | Comments Off

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

Posted by meagenda on September 30, 2009

elephant3

Image | belgianchocolate | Creative Commons

Keywords

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

The Elephant in the Room Series Three:

Who’s watching the WHO?

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

30 September 2009

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

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

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

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

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

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

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

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

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

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

Here you will find:

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

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

Participants’ CVs [MS Word]

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

Content Model Style Guide document [MS Word]

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

ICD11 Model Representation Comparison document [MHTML]

Content Model Blank document [Excel]

Content Model Myocardial infarction example document [Excel]

Content Model Urticaria example document [Excel]

Content Model Hypertension Category example document [Excel]

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

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

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

Myocardial infarction Content Model presentation [MS ppt slides]

Workflow document [pdf]

and ancillary material.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Suzy Chapman
30 September 2009

Posted in CISSD Project, Criticism of DSM-V, DSM revision process, Elephant Series DSM-V, ICD revision process, ICD-11, MUPSS Project, MUS, WHO (World Health Organization), WHO Collaborating Centre, WHO Somatisation Project | Comments Off

Reference to Psychological Medicine manuscripts in Summary of 4th meeting of Advisory Group for Revision of ICD-10 Chapter V

Posted by meagenda on September 20, 2009

Elephant70

Image | belgianchocolate | Creative Commons

Keywords

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

————

The Elephant in the Room Series Three:

Reference to Psychological Medicine manuscripts in the Summary of the 4th meeting of the Advisory Group for Revision of ICD-10 Chapter V (Mental and Behavioural Disorders)

WordPress shortlink for this posting:  http://wp.me/p5foE-22o

On 18 September, I posted a copy of the Summary Report of the 4th Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders held on 1-2 December 2008, which has only just been published by the WHO.

When reading the Advisory Group’s latest report, bear in mind that it is a summary of a meeting held nine months ago. It has not yet been established when the Advisory Group anticipates publishing a summary of its next meeting which is scheduled for the end of this month (28-29 September).

Since the December 2008 meeting took place, the DSM-V “Somatic Symptom Disorders” Work Group has published an Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report by DSM-V Work Group members, Joel Dimsdale (Chair) and Francis Creed. The report, published in the June 2009 issue of the Journal of Psychosomatic Research, expands on proposals in the very brief DSM-V Work Group update, published on the APA’s website, in April.

Page 1 of the Summary of the 4th Meeting of the International Advisory Group reports:

2. Update on proposal for large groupings of mental and behavioural disorders: Overview of Psychological Medicine articles

Presenter: Dr. David Goldberg

“Dr. Goldberg described key changes and additional specifications in the proposal for large groupings of mental disorders discussed at the AG meeting in March, 2008. Manuscripts based on this proposal are now in press in Psychological Medicine. The current version of the proposals includes five clusters of disorders. Each of these clusters meets some, though not all, of the validation criteria as modified from Robins and Guze by Hyman and colleagues. Similarities within the proposed clusters make it reasonable to view the different disorders within the cluster as variations on a single theme rather than separate and ‘comorbid’ disorders. The AG emphasized that decisions about an overarching architecture of categories will need to be made within the next year, keeping in mind WHO’s emphasis on clinical utility in a broad range of settings and countries…”

and goes on to discuss the relevance of large groupings to ICD revision and the testing of clinical utility in various contexts.

The “Cluster” manuscripts referred to as “in Press in Psychological Medicine” are listed on the APA’s recently published webpage:

“Peer-Reviewed Publications from DSM-V Development”

http://www.psychiatry.org/MainMenu/Research/DSMIV/DSMV/DSMRevisionActivities/DSMV-Publications.aspx

“As part of the efforts to make information about DSM-V development as widely disseminated as possible, the American Psychiatric Institute for Research and Education is maintaining an ongoing list of peer-reviewed journal publications arising from the DSM-V planning conference series (2002-08) and from DSM-V Task Force and Work Group discussions (e.g., empirical literature reviews, secondary data analyses). This list will be continually updated.”

[...]

“119. Andrews G, Goldberg DP, Krueger RF, Carpenter Jr WT, Hyman SE, Sachdev P & Pine DS. Exploring the Feasibility of a Meta-Structure for DSM-V and ICD-11: Could It Improve Utility and Validity? Psychological Medicine; in press.

120. Sachdev P, Andrews G, Hobbs MJ, Sunderland M & Anderson TM. Neurocognitive Disorders: Cluster 1 of the Proposed Meta-Structure for DSM-V and ICD-11. Psychological Medicine; in press.

121. Andrews G, Pine DS, Hobbs MJ, Anderson TM & Sunderland M. Neurodevelopmental Disorders: Cluster 2 of the Proposed Meta-Structure for DSM- V and ICD-11. Psychological Medicine; in press.

122. Carpenter Jr WT, Bustillo JR, Thaker GK, van Os J, Krueger RF & Green MJ. Psychoses: Cluster 3 of the Proposed Meta-Structure for DSM-V and ICD-11. Psychological Medicine; in press.

123. Goldberg DP, Krueger RF, Andrews G & Hobbs MJ. Emotional Disorders: Cluster 4 of the Proposed Meta Structure for DSM-V and ICD-11. Psychological Medicine; in press.

124. Krueger RF & South SC. Externalizing Disorders: Cluster 5 of the Proposed Meta-Structure for DSM-V and ICD 11. Psychological Medicine; in press.

125. Goldberg DP, Andrews G & Hobbs MJ. Where Should Bipolar Appear in the Meta-Structure? Psychological Medicine; in press.”

Gavin Andrews, MD, is a member of the DSM-V Anxiety, Obsessive-Compulsive Spectrum, Posttraumatic, and Dissociative Disorders Work Group.

Sir David Goldberg, MD, is a member of the DSM-V Mood Disorders Work Group

Robert Krueger, PhD, is a member of the DSM-V Personality and Personality Disorders Work Group

William T Carpenter, Jr., MD, chairs the DSM-V Psychotic Disorders Work Group and is a member of the DSM-V Task Force

Steven E Hyman, MD, is a member of the DSM-V Task Force and chairs the International Advisory Group for the Revision of ICD Mental and Behavioural Disorders

Perminder Sachdev MD, PhD, FRAZCP, is a member of the DSM-V Neurocognitive Disorders Work Group

Daniel S. Pine, MD, chairs the DSM-V Disorders in Childhood and Adolescence Work Group and is a member of the DSM-V Task Force

Juan R. Bustillo, MD, is a member of the DSM-V Psychotic Disorders Work Group

————

The June 2009 Journal of Psychosomatic Research Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report by Joel Dimsdale and Francis Creed was published as free access.

It is not yet known which issue of Psychological Medicine these manuscripts are to be published in or whether they will be freely available to non subscribers to the journal.

Given that the DSM-V Task Force insists that its oversight of the DSM revision is a transparent process, one assumes that these manuscripts are going to be made freely accessible to all stakeholders irrespective of whether the proposals contained within them still stand or are now superseded by alternative proposals.

See also: Summary Report of 3rd Meeting International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders 11 – 12 March 2008, Geneva

See also: Pages 3 and 4 Diagnostic Issues Symposium programme

————

Psychological Medicine is published by Cambridge Journals

http://journals.cambridge.org/action/displayJournal?jid=PSM

The Editors of Psychological Medicine are:

Kenneth S. Kendler
Psychiatric Genetics Research Program
Dept of Psychiatry
P O Box 980710
Richmond, VA 23298-0710 USA

and

Robin M. Murray
Institute of Psychiatry
de Crespigny Park
Denmark Hill
London SE5 8AF

The Editorial Board for Psychological Medicine includes:

Sir David Goldberg*
Institute of Psychiatry, London, UK

Professor Matthew Hotopf
Institute of Psychiatry, UK

Dr James Levenson*
Virginia Commonwealth University, USA

and

Professor S. C. Wessely
King’s College London, UK

———————–

*Dr James Levenson, MD, is a member of the DSM-V Somatic Symptoms Disorders Work Group and had been a member of the CISSD Project.

*Professor Sir David Goldberg, MD, Professor (Emeritus) Institute of Psychiatry, has been a member of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders and is a member of the APA’s DSM-V Work Group for Mood Disorders.

Professor Goldberg was a member of the UK National Editorial Team and UK National Consensus Group for the WHO “Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version”.

For archived correspondence between Connie Nelson, the WHO, Geneva, and the WHO Collaborating Centre, Institute of Psychiatry, from 2001, concerning the issue of the WHO Collaborating Centre’s flexible use of terminology around chronic fatigue, fatigue syndrome and neurasthenia, and chronic fatigue syndrome and ME see:

http://www.meactionuk.org.uk/whomisc.htm

I will update when these manuscripts have been published.

————

On the DSM-V Peer-Reviewed Publications from DSM-V Development page under “Somatoform Disorders” is listed the paper: 

88. Kanaan RAA, Lepine JP, & Wessely SC. The association or otherwise of the functional somatic syndromes. Psychosomatic Medicine, 2007; 69:855-859.

This paper can be accessed via Google Books “Preview”, published as Chapter 2 of:

“Somatic Presentations of Mental Disorders: Refining the Research Agenda for DSM-V”

Monograph published by the American Psychiatric Association, in 2009, summarising the proceedings of the September 2006 APA/WHO Beijing Symposium: Somatic presentations of mental disorders

See Chapter 2: Pages 9-18   http://tinyurl.com/somaticpresentationsDSM-V

————

For latest “Elephant in the Room” series report (compiled before the release of the Advisory Group’s 4th meeting Summary Report)

see: DSM, ICD: transparency and timelines 03 September 2009.

Posted in AfME, Action for M.E., CISSD Project, Criticism of DSM-V, Elephant Series DSM-V, ICD revision process, ICD-11, Institute of Psychiatry, MUPSS Project, MUS, Simon Wessely, WHO (World Health Organization), WHO Collaborating Centre, WHO Somatisation Project | Comments Off

Summary Report: 4th Meeting of International Advisory Group for Revision of ICD-10 Mental and Behavioural Disorders

Posted by meagenda on September 18, 2009

Elephant70

Image | belgianchocolate | Creative Commons

Keywords

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

————

WordPress shortlink for this posting:  http://wp.me/p5foE-21S

18 September 2009

The International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders (Chapter V) was constituted by the WHO in 2007 with the primary task of advising WHO on all steps leading to the revision of mental and behavioural disorders classifications in ICD-10 in line with the overall revision process.

Timelines for the revision process towards ICD-11 are set out here:  http://wp.me/p5foE-1Yh

A 4th meeting of the Advisory Group was held in Geneva on 1 – 2 December 2008.

I am advised by the WHO that no meetings have taken place since this December 2008 meeting and that a 5th meeting is scheduled this month, for 28 – 29 September.

Since late March, I have been liaising with the Advisory Group Senior Project Officer and the ICD-11 Revision Steering Group Chair for a copy of the summary report for the Advisory Group’s last meeting (December 2008).

A summary report has been released today and is published on the WHO website in PDF format. A list of participants has been provided in an Annex and both documents are appended.

It is unfortunate that this important summary of a meeting held over nine months ago has been published less than two weeks before the Advisory Group’s next meeting.

The Advisory Group (AG) and all its working groups (including the ICD-DSM Harmonization Group) were appointed in 2007 for a period of two years, this has now expired. A new Advisory Group has been appointed for the next two year period.

The names of the members of the reconstituted Advisory Group and the professional and scientific organizations that have been asked to appoint representatives to it have been provided to me.

I have also been provided with the names of the members of the Topic Advisory Group (TAG) for Neurology and a list of the professional and scientific societies and their appointed representatives associated with this TAG.

I intend to circulate these when clearance has been obtained for the publication of information not currently available on the WHO website or the ICD Update and Revision Platform.

The WHO maintains an ICD Revision Facebook presence at: http://www.facebook.com/ICD11

When reading this document please bear in mind that it is a summary of a meeting held nine months ago. It is not yet established when the Advisory Group anticipates publishing a summary of the meeting scheduled for the end of this month. Since the December 08 meeting took place, the DSM-V “Somatic Symptom Disorders” Work Group has published an Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report by DSM-V Work Group members, Joel Dimsdale (Chair) and Francis Creed. This was published in the June issue of the Journal of Psychosomatic Research and expands on the proposals in the brief DSM-V April 2009 Work Group update (links for both these documents at the end of this posting).

PDF icon l

ICD Advisory Group Meeting Summary December 08

 

Text:

Summary Report: 4th Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders

http://www.who.int/mental_health/evidence/en/

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

PDF Page 1

World Health Organization
Department of Mental Health and Substance Abuse
Geneva, Switzerland

Meeting of the International Advisory Group
for the Revision of ICD-10 Mental and Behavioural Disorders
1 – 2 December 2008, Geneva, Switzerland

Meeting Summary Report

The fourth meeting of the International Advisory Group (AG) for the Revision of ICD-10 Mental and Behavioural Disorders was held in Geneva during 1 – 2 December 2008. A list of participants is provided in the Annex. The AG was constituted by WHO for a period of 2 years (2007 – 2008) with the primary task of advising WHO on all steps leading to the revision of the mental and behavioural disorders classification in ICD-10 in line with the overall revision process.

This Summary Report provides a summary of the conclusions reached during the meeting

1. Opening Remarks

The meeting was opened by Dr. Benedetto Saraceno, Director, Department of Mental Health and Substance Abuse, WHO. Dr. Mario Maj was introduced as the new representative of the World Psychiatric Association (WPA) on the AG, and Dr. Ann Watts as the new representative of the International Union of Psychological Science (IUPsyS). Dr. Saraceno announced that the International Advisory Group for the Revision of ICD-10 Diseases of the Nervous System (Chapter VI) has been approved and members appointed. The Department of Mental Health and Substance Abuse will manage the technical part of the revision of Chapter VI, as it is doing for Chapter V. Dr. Saraceno reminded the AG that this would be the final meeting of this group in its current composition. As noted, the AG was appointed in January, 2007 for a 2-year period.

Dr. Steven Hyman, AG Chair, discussed the growing public awareness and concern about conflict of interest issues as they relate to the development and revision of systems for mental and behavioural disorders classification. It is very important that any potential or apparent conflict of interest be clearly disclosed as required by WHO policy, but also that the AG be fully aware of all such issues so that it can manage them appropriately and transparently. Dr. Hyman suggested that it is also important to be transparent about AG members’ involvement in the American Psychiatric Association’s revision of its Diagnostic and Statistical Manual of Mental Disorders (DSM), in the light of discussions about harmonization and copyright issues that may have financial implications.

Regarding the formation of a new AG, the AG was aware of the importance of appropriate representation by region, gender, and profession. In addition, the AG agreed that it would be useful to select AG members who have an institutional base that will facilitate their implementation of the types of testing programmes in multiple settings, countries, and cultures.

2. Update on proposal for large groupings of mental and behavioural disorders: Overview of Psychological Medicine articles

Presenter: Dr. David Goldberg

Dr. Goldberg described key changes and additional specifications in the proposal for large groupings of mental disorders discussed at the AG meeting in March, 2008. Manuscripts based on this proposal are now in press in Psychological Medicine. The current version of the proposals includes five clusters of disorders. Each of these clusters meets some, though not all, of the validation criteria as modified from Robins and Guze by Hyman and colleagues. Similarities

Page 2

within the proposed clusters make it reasonable to view the different disorders within the cluster as variations on a single theme rather than separate and ‘comorbid’ disorders. The AG emphasized that decisions about an overarching architecture of categories will need to be made within the next year, keeping in mind WHO’s emphasis on clinical utility in a broad range of settings and countries.

3. Relevance of large groupings to ICD revision: Testing clinical utility of large groupings in low and middle-income countries

Presenters: Dr. Rangaswamy Thara, Dr. Oye Gureje, Dr. Maria Elena Medina-Mora, and Dr. Khalid Saeed

Based on their experience in a variety of institutional settings in low and middle-income countries, Drs. Thara, Gureje, Medina-Mora, and Saeed were asked to describe briefly the major issues and challenges related to assessing the utility of the proposed large groups of mental disorders in those countries and settings. Dr. Thara emphasized that behavioral and functional descriptions would be more helpful in community settings than lists of criteria. Dr. Gureje pointed out that treatment of mental disorders in primary care and the need for a simpler, user friendly system are not just issues for low and middle-income countries. Dr. Medina-Mora described possibilities for a range of demonstration projects, particularly in Latin America, that would provide useful information about the proposed groupings. The primary goal of these projects would be to examine clinical utility within specific cultural and economic contexts, and the types of additional support that may be needed to improve identification and treatment of mental disorders. Dr. Saeed suggested that may be little correspondence between public health needs in mental health and the issues that would be addressed by a re conceptualization of mental disorders categories along the lines of the proposed meta-structure.

4. Relevance of large groupings to ICD revision: Testing clinical utility in other contexts

Presenters: Dr. Michael Klinkman, Dr. Mario Maj, Dr. Norman Sartorius, Dr. Graham Mellsop, and Dr. Toshimasa Maruta

The next series of presentations focused on the potential utility of the proposed large groups of mental disorders and possibilities for testing their clinical utility in a variety of other contexts, including professional societies and national or regional networks. Dr. Klinkman discussed the potential utility of the proposed large groupings in primary care. WONCA’s International Classification of Primary Care (ICPCP) provides a limited number of categorical mental disorders diagnoses (e.g., depressive disorder), as well as a variety of commonly presented symptoms and a list of social problems. Dr. Maj suggested that the proposed large groupings may be no simpler and no less confusing to the average clinician than existing clusters, and may not represent the natural world any better. Dr. Sartorius discussed the possible role of the Global Scientific Partnership Network in testing the global applicability of the proposals. Dr. Mellsop pointed out that even if the evidence for the proposed clusters is mixed if examined in relationship to the Hyman validation criteria, it may compare favorably to an evaluation of the current nine groupings against the same validation criteria. Dr. Maruta decribed efforts underway in Japan to prepare for field trials, and identified several questions that should be addressed.

Conclusions, Items 2 – 4

The AG emphasized that in considering these and other proposals for the ICD, it is important to make a distinction between validity and utility. This distinction is useful even though they can be considered as overlapping constructs. Utility must always be considered with respect to a particular purpose (e.g., clinical, public health, communication, education, research). From a research perspective, the AG considered the large groupings proposal to be useful as a hypothesis. From a clinical perspective, grouping disorders for which the same interventions are effective (e.g., most of the emotional disorders) will likely be helpful; groupings that do not inform assessment and treatment will be less clinically useful. While WHO views validity as an important priority for the

Page 3

classification, the goal of increasing the utility of the classification for identifying and treating mental disorders and reducing associated disease burden also provides a compelling basis for making changes. The development of methods and specific plans for testing questions related to clinical utility in relevant settings should be among the priorities for work during the next year.

5. Epidemiological evidence coordination group: Available datasets, information needs, and work plan

Presenters: Dr. Ronald Kessler and Dr. Somnath Chatterji

The purpose of this presentation was to inform the Advisory Group of the work conducted and planned by the Epidemiological Evidence Coordination Group, specifically including the assessment of available databases for relevant epidemiological analyses, a description of analyses in process and potential future analyses, and examples of results. Activities of the group include conducting secondary analyses of the World Mental Health Survey data, designing and soliciting new data collections, and collaborating with existing networks of researchers focused on particular disorders or disorder clusters.

6. Secondary data analyses for DSM-V

Presenter: Dr Darrel Regier

Dr Regier described strategies and methods for secondary analyses of epidemiological data that are being used in the DSM revision process. To date, secondary data analyses have focused on:

a) the developmental expression of disorders across the lifespan; b) differences in expression of disorders by gender and culture; c) disorder spectra; and d) the interface between mental and general medical disorders. Longitudinal data sets are being used to conduct analyses on the developmental expression of disorders. The AG requested that the results of epidemiological and secondary data analyses conducted in the context of the DSM and ICD revisions be made available to both groups.

7. Global Scientific Partnership Network and Coordinating Group

Presenter: Dr. Norman Sartorius

Dr. Sartorius described the current composition of the Global Scientific Partnership Network (GSPN) and highlighted the need for additional representation from particular geographic regions – most particularly Latin America and Southeast Asia – and with specific types of experience and expertise, including experts with professional backgrounds other than psychiatry. AG members and professional societies will make recommendations for additional members for the GSPN. The WHO Secretariat will work with Dr. Sartorius to improve representation.

8. Broadening revision inputs

a) Summary of comments received from ICD Update and Revision Platform

Presenter: Dr. Geoffrey Reed

Dr. Reed reported that the Update and Revision Platform is easy to use and works extremely well, and again commended members of the Classifications, Standards, and Terminology group for their work on it. He provided a summary of comments received to date, which have generally been highly specific proposals in areas of particular professional or personal interest to the commenter.

b) Soliciting input from international professional societies

Presenters: Dr. Mario Maj (WPA), Dr. Ann Watts (IUPsyS), Dr. Nicholas Hardiker (ICN), Dr. Michael Klinkman (WONCA), and Mr. Rolf Blickle-Ritter (IFSW)

Page 4

Dr. Maj described how World Psychiatric Association (WPA) member societies could provide a cross-cultural perspective in the several important areas related to the revision. Dr. Watts described how the International Union of Psychological Science (IUPsyS) could help to expand revision input by identifying and nominating global experts, providing comments through a global, electronically-based network of national and regional members, and affiliates; and participating in field trials. Dr. Hardiker described how the International Council of Nurses (ICN) can provide access to nurses’ experience with classification in the delivery of mental health services. Dr. Klinkman described how the World Organization of National Colleges, Academies and Academic Associations of General Practitioners/Family Physicians (WONCA) can contribute to the revision effort, for example by helping the Advisory Group to re-conceptualize somatoform presentations and risk factors for mental illness, and clarifying which aspects of psychosocial factors need to be revised. Mr. Blickle-Ritter indicated that the International Federation of Social Workers (IFSW) can collect information relevant to the ICD revision from social workers across countries. As the need arises, the AG or the WHO Secretariat will direct specific, targeted question to the professional societies, and may also want to ask for background literature or scientific information. However, professional organizations are also encouraged to initiate input regarding the direction, method, and content of the revision process based on the perspectives of their membership and the aims of their organizations.

9. ICD/DSM Harmonization Group

Presenters: Dr. Darrel Regier and Dr. David Kupfer (APA); Dr. Benedetto Saraceno and Dr.Shekhar Saxena (WHO).

Dr. Hyman began this discussion by raising the issue of how the international community might best be involved in the DSM process. To the extent that ICD and DSM diverge, this may create unintentional divergence in treatment, research, and epidemiology. It is often clear that the two systems agree about the nature of the phenomenon that categories represent, but approach them in slightly different ways. This challenge is elevated when groups begin to revise individual criteria sets, as research has demonstrated that relatively minor differences in criteria can have a large impact on prevalence estimates.

Speaking for the APA side of the harmonization agenda, Dr. Regier placed the current situation in a historical context. While there had been early collaboration between ICD and DSM for DSM-I and DSM-II, DSM-III made a major break and as a result was substantially different from ICD-9. In retrospect, this represented a failure to communicate and collaborate. At the same time, it is possible that DSM-III was so different from ICD that it would have been very difficult for WHO to obtain the necessary agreement to make so dramatic a change in any case. Dr. Regier indicated that APA had made a major effort to make the DSM process as collaborative as possible beginning in 1999, and characterized the DSM process as cross-cultural and interdisciplinary. He described the DSM process as a very transparent one; the proceedings from all of the working conferences have been published or are in process. He emphasized the importance of an advisory review process that can help to make sure that DSM-V will fit the needs of the world, crossculturally, and to make sure that it can be integrated with other components of the ICD. Dr. Regier suggested that a unique contribution that WHO can make is to facilitate an international consensus that avoids some of the risks of independent national classifications.

Dr. Kupfer, also speaking from the APA side of the harmonization issue, emphasized that he saw communication between APA and WHO as having been very successful, with open conversations, active involvement, and observer status at one another’s meetings. There continues to be discussion about larger clusters as a part of the DSM process, which is a theme that came out of the WHO/APIRE Public Health conference. A joint discussion about the issue of impairment is now becoming more prominent. The DSM effort is now looking into adopting or creating measures of impairment that are relatively independent of each diagnosis. This should

Page 5

help tremendously, particularly with co-morbidity. It is important that such instrumentation efforts not be undertaken separately, but as a part of a collaborative work plan.

Dr. Saraceno, speaking from the WHO side of the harmonization issue, raised a number of concerns related to harmonization. As Director of the WHO Department of Mental Health and Substance Abuse, he routinely receives communications from global leaders in the field. In recent months, the topic of the ICD revision has been prominent, and the issue of harmonization with the DSM has been raised frequently. The importance of harmonization is widely endorsed, but many have emphasized that the two processes should be parallel and independent and that WHO’s development of ICD should not be substantially influenced by the DSM process. Some have specifically criticized APA’s and WHO’s attendance at one another’s revision meetings, pointing out that other classification groups – Chinese, Cuban, etc. – are not treated equivalently. There has also been criticism of cross-membership on DSM and ICD working groups. These issues regarding the interaction of the ICD and DSM processes will need to take into account, both in terms of their substance and in terms of perception, even in the overall context of harmonization as a general goal.

Dr. Saxena, also speaking on behalf of WHO, acknowledged a history of successful collaboration between WHO and APA, including the recent conferences, but also noted significant challenges. The mandates, organizational requirements, and interests of WHO and APA do not overlap entirely and cannot be put aside. The constitutional responsibility of WHO for ICD is a unique and serious one. As the ICD process goes forward, there will be a demand for increasing specificity, which will create more difficulties if uniformity is seen as the most important goal. There are also issues related to copyright and publication revenues. There was a Memorandum of Understanding between APA and WHO in 1990 regarding ICD-10 and DSM-IV, which seems to have worked well. However, changes in organizational priorities, global health care, and technology suggest that it may not be a simple matter to achieve a similarly workable agreement in the current context. Commercial issues may become more prominent the greater the degree of harmonization achieved.

10. Functional Status, Disability, and Diagnosis

Presenters: Dr. Geoffrey Reed and Dr. Somnath Chatterji

The purpose of this session was to articulate the implications for the ICD revision of the model of functioning and disability provided by the International Classification of Functioning, Disability,and Health (ICF). In particular, this was considered in relation to the AG’s expressed goal of separating diagnosis and functional status. In examining the differences between ICD and DSM, the ‘clinical significance’ criterion – most often operationalized in terms of functional status – is one of the most important source of differences between the two systems, and there is evidence that this is largely responsible for difference in prevalence estimates using the two systems. A major source of confusion in this discussion is that there is no agreement about the meaning and use of terms – e.g., functional status, impairment, disability – so that the degree of consensus about these issues is difficult to evaluate.

Signs and symptoms of most diseases or health conditions involve impairments in body functions or body structures (e.g., insulin deficiency, spinal cord injury, high blood pressure, loss of vision, impaired reuptake of serotonin). Therefore, impairments in body functions and structures – even though the ICF includes these in its conceptualization of disability – must be allowable as diagnostic criteria. Moreover, there are some important symptoms of mental disorders that in the ICF would be considered to be part of Activities and Participation. Examples include disturbances in social-emotional functioning in autism, ‘persistent refusal to accept medical advice’ in somatization disorder, and such behaviours as lying, breaking the law, putting one’s job at risk, and acquiring debts in pathological gambling. In some cases, these may be defining features of a disorder that are assumed to correspond to some underlying brain process that cannot be directly observed. In other cases, these may be considered observable manifestations of a

Page 6

disorder in a particular environment. And in still others, these may in fact be best conceptualized as consequences of a disorder.

The AG noted that there are at least two separable projects related to the interaction of mental disorder and disability. The first is the question of how disability related to mental disorders should be assessed as a separate construct. The second is an evaluation of the extent to which disability is already embedded in mental disorder criteria and a consideration of whether at the criteria level disorder and disability can be teased apart. A part of this second project concerns the separation of disability and disorder severity, and whether this would be the same for all disorders. The AG affirmed that it was important to continue to work on issues related to the relationship of diagnosis, functioning, and disability. Where possible, it will be helpful to do this collaboration with the DSM revision given the relative importance of this issue among the differences between ICD and DSM. However, the AG made a distinction between the discussion of how criteria are defined in relationship to disability, which is of direct concern to the ICD revision effort, and the instrumentation of disability within the DSM as a more general issue. This second area is not as directly relevant to the ICD mental and behavioural disorders revision effort.

11. Closing Remarks

Dr. Saraceno described his view of the needs for the reconstituted AG that will be appointed in 2009. For the first 2 years, the AG has really focused on conceptual discussions and decisions about the overall direction of the ICD revision. This phase of the work is over. The next stage will require more concrete and specific decisions about the shape and content of the classification. While there are specific needs for regional and gender representation that WHO must satisfy, there is also a great need to consider representation of expertise in relation to the tasks that will be required over the next 2 years. There must be an ability to consult more effectively and efficiently with external people who can provide specific and needed inputs without having to be members of a continuing advisory structure. There will also be a need for smaller, technical groups to conduct specific, targeted pieces of work. A more flexible model will be required, as well as people who will actually be able to assist with implementation and be accountable for those tasks. Dr. Saraceno extended WHO’s sincere thanks to the group and to the Chair for their work over the past two years.

[Ends]

Annex: LIST OF PARTICIPANTS

WORLD HEALTH ORGANIZATION

4th Meeting of the Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders

1 – 2 December 2008 Geneva, SWITZERLAND

Venue: Conference Room M.105 (1st day) and conference room D (2nd day) WHO Main building

LIST OF PARTICIPANTS

1. Gavin Andrews, Clinical Research Unit for Anxiety Disorders, St. Vincent’s Hospital, 299 Forbes Street, Darlinghurst, NSW 2010, Australia. Email: gavina@unsw.edu.au (unable to attend)

2. Rolf Blickle-Ritter, International Federation of Social Workers, Psychiatrizentrum Münsingen, Leitung Sozialdienst, 3110 Münsingen, Switzerland. Email: rolf.blickle@gef.be.ch

3. David Goldberg, Institute of Psychiatry, King’s College, London, United Kingdom. Email: davidpgoldberg@yahoo.com

4. Oye Gureje, Department of Psychiatry, University College Hospital, PMB 5116 Ibadan, Nigeria. Email: ogureje@comui.edu.ng

5. Nicholas Hardiker, International Council of Nurses, Salford Centre for Nursing, Midwifery & Collaborative Research, University of Salford, Greater Manchester, United Kingdom. Email: N.R.Hardiker@salford.ac.uk

6. Steven Hyman (Chairman), Harvard University, Massachusetts Hall, Cambridge, MA 02138, USA. Email: steven_hyman@harvard.edu

7. Michael Klinkman, The World Organisation of Family Doctors (Wonca), University of Michigan Depression Center, 1500 E Medical Center Drive, F6321 MCHC Ann Arbor, MI 48109-0295, USA. Email: mklinkma@med.umich.edu

8. Mario Maj, World Psychiatric Association, Institute of Psychiatry, University of Naples, Largo Madonna Delle Grazie, I-80138 Naples, Italy. Email: majmario@tin.it

9. Maria Elena Medina-Mora, Instituto Nacional de Psiquiatria Ramon de la Fuente, Calzada Mexico-Xochimilco, Col. San Lorenzo Huipulco, México, D.F. 14370, Mexico. Email: medinam@imp.edu.mx

10. Karen Ritchie, Institut National de la Santé et de la Recherche Médicale, E 361 Pathologies of the Nervous System Epidemiological and Clinical Research, Hôpital La Colombière, 34093 Montpellier Cedex 5, France. Email: karen.ritchie@inserm.fr

11. Norman Sartorius, 14 chemin Colladon, 1209 Geneva, Switzerland. Email: sartorius@normansartorius.com

12. Rangaswamy Thara, Schizophrenia Research Foundation (SCARF), R/7A, North Main Road, West Anna Nagar Extension, Chennai- 600 101, India. Email: scarf@vsnl.com

13. Ann D. Watts, International Union of Psychological Science, Entabeni Hospital, Medical Centre West, 148 South Ridge Road, Durban 4001, South Africa. Email: anndwatts@iafrica.com

14. Xin Yu, Institute of Mental Health, Peking University, Huayuanbeilu 51, Haidian District, 100083, Beijing, China. Email: yuxin@bjmu.edu.cn (unable to attend)

SPECIAL INVITEES:

15. Ronald C. Kessler, Ph.D., Professor, Department of Health Care Policy, Harvard Medical School, 180 Longwood Avenue, Suite 215, Boston, MA 02115, USA. Email: kessler@hcp.med.harvard.edu

16. Toshimasa Maruta, Department of Psychiatry, Tokyo Medical University,6-7-1 Nishi-Shinjuku, Shinjuku-Ku, Tokyo 160-0023, Japan. E-mail: maruta@tokyo-med.ac.jp / t-maruta@bd5.so-net.ne.jp (Representative of the Government of Japan)

17. Graham Mellsop, University of Auckland, P O Box 128469, Remuera, Auckland New Zealand Email: Mellsopg@waikatodhb.govt.nz (Representative of the Government of New Zealand)

18. Kimmo Kuoppasalmi, National Public Health Institute, Mannerheimintie 166, 00300 Helsinki, Finland. Email: kimmo.kuoppasalmi@ktl.fi (Representative of the Government of Finland) (unable to attend)

OBSERVERS:

19. David Kupfer, Department of Psychiatry, University of Pittsburgh, Western Psychiatric Institute & Clinic, 3811 O’Hara Street, Pittsburgh, PA 15213-2593, USA. Email: kupferdj@upmc.edu

20. Darrel Regier, American Psychiatric Association, 1000 Arlington Blvd, Suite 1825, Arlington, VA 22209-390, USA. Email: dregier@psych.org

WHO SECRETARIAT:

21. Somnath Chatterji, Country Health Information, Department of Measurement and Health Information Systems, WHO. Email: chatterjis@who.int

22. Tarun Dua, Evidence, Research and Action on Mental and Brain Disorders, Department of Mental Health and Substance Abuse, WHO. Email: duat@who.int

23. Robert Jakob, Classifications and Terminology, Department of Measurement and Health Information Systems, WHO. Email: jakobr@who.int

24. Vladimir Poznyak, Management of Substance Abuse, Department of Mental Health and Substance Abuse, WHO. Email: poznyakv@who.int

25. Geoffrey Reed, Evidence, Research and Action on Mental and Brain Disorders, Department of Mental Health and Substance Abuse, WHO. Email: reedg@who.int

26. Khaled Saeed, WHO Regional office for the Eastern Mediterranean, Cairo, Egypt. WHO Email: Saeedk@emro.who.int

27. Benedetto Saraceno, Director, Department of Mental Health and Substance Abuse, WHO. Email: saracenob@who.int

28. Shekhar Saxena, Evidence, Research and Action on Mental and Brain Disorders, Department of Mental Health and Substance Abuse, WHO. Email: saxenas@who.int

29. Bedirhan Ustun, Classifications and Terminology, Department of Measurement and Health Information Systems, WHO. Email: ustunb@who.int

30. Rosemary Westermeyer, Evidence, Research and Action on Mental and Brain Disorders, Department of Mental Health and Substance Abuse, WHO. Email: westermeyerr@who.int

[Ends]

————

Summaries of the first three meetings of the Advisory Group can be found here:

http://www.who.int/mental_health/evidence/en/

Summary Report of the 1st Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders 11 – 12 January 2007, Geneva
http://www.who.int/mental_health/evidence/icd_advisory_group_meeting_jan_%202007_summary.pdf

Summary Report of the 2nd Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders 24 – 25 September 2007, Geneva
http://www.who.int/mental_health/evidence/icd_summary_report_sept_2007.pdf

Summary Report of the 3rd Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders 11 – 12 March 2008, Geneva
http://www.who.int/mental_health/evidence/icd_summary_report_march_2008.pdf

————

The April 2009 report of the APA DSM-V Somatic Distress Disorders Work Group (also known as the Somatic Symptom Disorders Work Group) can be read here: http://tinyurl.com/DSMSDDWGApril09

The Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report by DSM-V Work Group members, Joel Dimsdale and Francis Creed, published in the June issue of the Journal of Psychosomatic Research expands on the proposals in the April 2009 update.

Free access to both text and PDF versions of the Editorial here:

http://download.journals.elsevierhealth.com/pdfs/journals/0022-3999/PIIS0022399909000889.pdf

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

ME agenda DSM-V and ICD-11 Directory page:  http://meagenda.wordpress.com/dsm-v-directory/ 

Latest “Elephant in the Room Series”: DSM, ICD: transparency and timelines:  http://wp.me/p5foE-1Yh

Suzy Chapman
18 September 2009

Posted in AfME, Action for M.E., CISSD Project, DSM revision process, Elephant Series DSM-V, ICD revision process, ICD-11, MUPSS Project, MUS, WHO (World Health Organization), WHO Collaborating Centre | Comments Off

The Elephant in the Room Series Three: Action for M.E. stuffs the elephant back into the cupboard

Posted by meagenda on August 25, 2009

elephant3

Image | belgianchocolate | Creative Commons

Keywords

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

The Elephant in the Room Series Three:

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

WordPress Shortlink for this posting: http://wp.me/p5foE-1TO

————

The Conceptual Issues in Somatoform and Similar Disorders (CISSD) Project ran from 2003 and was wrapped up by autumn 2007. But the Project’s principal administrator, Action for M.E., has only just this week published an article around the Project.

Were it not for the fact that I and a small number of others have been agitating for information on the CISSD Project since early 2007, it is likely that Action for M.E. would have published nothing at all.

“Classification conundrum” is published on pages 16 and 17 of the August 2009 issue of Action for M.E.’s membership magazine, InterAction (Issue 69).

Note that although the Project had been initiated by Dr Richard Sykes PhD, Dr Sykes does not appear to have contributed to this article, which is authored by Dr Derek Pheby. In fact, Dr Sykes and his role as instigator and co-ordinator of the Project is not mentioned at all. Nor is the Project’s funder – the charitable Trust run by Dr Sykes’ brother, Sir Hugh Sykes, a non-executive director of A4e, the largest European provider of Welfare to Work programmes.

A considerable portion of this article’s second page is given over to an image of a man, most aptly holding up a large question mark. There have been a very large number of questions about the nature and implications of the CISSD Project, the most obvious one being: why has Action for M.E. sought to keep the lid on it for so long?

Action for M.E. could have used this space to expand on the nature of the Project and list the names of those involved in it.

But I guess there is no easy way of broaching that the Project was chaired by psychiatrists, Professors Michael Sharpe and Kurt Kroenke; or that the workgroup comprised a couple of dozen international researchers and clinicians from the field of liaison psychiatry and psychosomatics and that not a single researcher outside this field was a member of the workgroup; or that the sole patient rep on board just happens to have co-authored books on CFS with the Project’s UK Chair, Michael Sharpe; or that none of our other national ME patient organisations were consulted; or that as stakeholders, we were kept in the dark about this Project for six years; or that the workgroup included influential, international researchers like Francis Creed, Kurt Kroenke, Arthur Barsky, Charles Engel, James Levenson, Javier Escobar, Per Fink, Peter Henningsen, Wolfgang Hiller, Bernd Löwe, Richard Mayou, Winfried Rief et al… several of whom now sit on the DSM-V Somatic Symptoms Disorders Work Group and the DSM Task Force, at the very core of the APA’s DSM revision process.

Easier by far to pad out this apologia piece with a stock photo…

Action for M.E. could usefully have linked to the review paper published by Project leads, Sharpe, Kroenke and Sykes, in July 2007, that resulted out of the CISSD workshops, but hasn’t done so; it could have linked to the CISSD Project “summary report” published on the ME Association’s website, in association with Dr Sykes, in June; it could have published a link to a copy of the CISSD “Final report” it received from Dr Sykes, in December 2007, which contains material omitted from the “summary report” as provided to the ME Association – but it has not published this document, either.

For links to these documents and an unauthorised version of the December 2007 “Final report” see:

The Elephant in the Room Series Two: Status of the CISSD Project unscrambled: http://wp.me/p5foE-1GL

Appended is the article published in InterAction, yesterday, which represents all that Action for M.E. does want you to know.

Before it stuffs this Project back into the cupboard, I call on Action for M.E. to publish a copy of the December 2007 “Final report” by Dr Richard Sykes on its website, prefaced with an erratum note addressing the errors of coding within “Appendix B” of the document and also addressing Dr Sykes’ misconception that “Chronic fatigue syndrome” does not appear in the International Statistical Classification of Diseases and Related Health Problems: 10th Revision Version for 2006, Volume 3, the Alphabetical Index:

( Indexed on page 528, top right hand column: http://www.scribd.com/doc/7350978/ICD10-2006-Alphabetical-Index-Volume-3 )

Once again, I call on the ME Association to publish a commentary and analysis of the CISSD Project, because to date, the MEA has made no comment whatsoever on the Project, itself, nor around the revision and “harmonization” processes towards DSM-V and ICD-11 that the CISSD Project was set up to inform.  The ME Association has yet to publish a copy of the “summary report” provided by Dr Sykes in its own magazine, ME Essential.

In June, an Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report: Francis Creed and Joel Dimsdale was published in the Journal of Psychosomatic Research, for which Francis Creed is co-editor.

Neither Action for M.E., the ME Association, Dr Sykes or Dr Derek Pheby has published commentary on the most recent proposals of the DSM-V Somatic Symptoms Disorders Work Group, as set out in this Editorial and in a very brief report on the APA’s DSM-V webpages:

JPsychRes: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext
April ‘09 report of the DSM-V Somatic Symptoms Disorder Work Group: http://tinyurl.com/DSMSDDWGApril09

I also call on the ME Association to approach Dr Sykes to set out the nature, aims and objectives of the “London Medically Unexplained Physical Symptoms and Syndromes (MUPSS) Project” for which he receives a research award of £27,000 per year through the Institute of Psychiatry for a new project that is once again being funded by the Hugh and Ruby Sykes Charitable Trust.

For information on the DSM-V and ICD-11 revision processes, and on the CISSD Project see: http://meagenda.wordpress.com/dsm-v-directory/

“Classification conundrum” by Dr Derek Pheby, InterAction 69, Action for M.E. membership magazine, August 2009, pp 16 and 17:

We are at a moment in time when the underlying pathology of M.E. is on the point of elucidation at last, writes Dr Derek Pheby. It is becoming apparent that the syndrome we know as M.E. consists of several different phenotypes, each with its own distinctive pathological basis…

These should in due course be recognised as individual disease entities, a process that would be helped by the identification of specific biomarkers. This will be a major historical change. It should bring to an end the long running concern about the nature of M.E. and what sort of illness it should be regarded as being. In particular, it will end the argument that has been a serious concern of many people with M.E., that many doctors and others have regarded the illness as primarily psychiatric and that this is reflected in the main classification systems by which diseases are recorded.

Much concern has centred around so-called ’somatoform disorders,’ as people with M.E. have frequently been assigned to this category and its position in the main statistical classification in current use, which is the International Classification of Diseases (10th. revision) (ICD-10).

‘Somatoform disorders’ are located in the ‘Mental and behavioural disorders’ chapter of ICD-10. They are also a category within a specifically psychiatric classification, widely used by psychiatrists, entitled the Diagnostic and Statistical Manual (4th edition) (DSM-IV).

Both ICD-10 and DSM-IV are statistical classifications. They are simply tools that doctors and researchers need if they are to examine trends in the occurrence of disease and assess the effectiveness of treatments and other interventions designed to reduce the occurrence of disease or mitigate its impact.

There is a paradox though, in that medical research looks forward into a future in which medical knowledge is increasing all the time, while medical terminology, including classification systems, essentially looks backwards to a time when medical knowledge was less advanced than it is today.

Thus ICD-10, which was introduced into the UK in 1994, was the product of thinking that mostly took place in the 1980s. It is therefore now a quarter of a century old, so it is not surprising if it is now beginning to look somewhat frayed around the edges.

Indeed in two areas it was already out of date when it was introduced into the UK, having already been supplanted by new classifications developed as a result of new scientific knowledge acquired since ICD-10 was first developed. These two areas were brain tumours and lymphomas and the new classifications were the Kleihuis histological classification of neurological tumours and the REAL (Revised European American Lymphoma) classification.

CISSD

ICD-10 and DSM-IV will both soon be replaced by lCD-11 and DSM-V respectively. One input into the development of ICD-11 has come from a project entitled Conceptual Issues in Somatoform and Similar Disorders (CISSD). This was an international project, coordinated from Westcare.

When Action for M.E. merged with Westcare a few years ago, it found itself the residual legatee of this project. This caused unease among some people with M.E. who concluded, mistakenly, that the charity had committed itself to a party line which treats M.E. as a somatoform and hence essentially as a psychiatric condition. This is not the view of Action for M.E., which supports the World Health Organisation’s classification of M.E. as a neurological condition.

The CISSD project did not resolve the key question of whether the category of somatoform disorders should be retained in the classifications of mental disorders or not. However, it did recommend that if the category were to be retained, the diagnosis should not be made solely on the basis of the patient manifesting ‘medically unexplained’ symptoms but should require that the patient manifest ‘positive psychological criteria’ as well.

The authors also recommended that the subcategory in DSM-IV of ‘undifferentiated somatoform disorder’ – which is a pigeon hole into which it has not been uncommon for people with M.E. to be pushed – should be abolished.

These two changes should be beneficial to people with M.E. That benefit is likely to be marginal though, because it is not unknown for ‘positive psychological criteria’ to be wrongly attributed to people with M.E., in a process of post hoc rationalisation, in order to justify an inappropriate diagnostic label.

What is really needed to resolve this diagnostic problem is not a change in classifications but an increase both in scientific knowledge so that there is no longer any doubt as to how M.E. should be classified and in the respect in which people with M.E. are held and in the quality of health care they receive. There would be a few problems if all doctors and other health professionals deployed the same level of clinical knowledge and skill that the best do already.

Knowledge gap

Realistically, our knowledge of the various phenotypes within the M.E. umbrella is not yet adequate for this to be reflected in the revised classification. It remains to be seen also whether the CISSD recommendations are acted upon or not. However, one thing that is very clear is that ICD-11, on the day it is promulgated, will like ICD-10 already be  in part out of date and will become increasingly so over the decade or so that it will be in use.

Much of the difficulty arises from the concept of ‘medically unexplained’ symptoms. There is nothing innate about this. What may be medically unexplained to one generation of doctors may be perfectly capable of explanation to  the next, given the onward march of science.

It is entirely wrong to assign a person to a category of psychiatric illness because his or her symptoms are medically unexplained. Such a label points more to a deficiency in doctors because of their inability to explain symptoms, than in the patient. Indeed to assign someone to the wrong category on the basis of a false understanding of the nature of the illness and its context is an example of a well-known phenomenon which psychologists term ‘fundamental attribution error.’

Freud’s legacy

This tendency to regard people as having a primary psychiatric diagnosis when they are physically ill is probably a consequence of the baleful influence of Sigmund Freud on 20th century medicine.

Sarah Vaughan, a GP from Bristol, writing recently in the British Medical Journal, refers to Freud’s: “…most damaging legacy – namely, the widespread belief that all symptoms that elude diagnosis are psychosomatic in origin. This assumption has caused untold frustration and distress to patients who, on top of having illnesses that elude medical diagnosis, have to face being misdiagnosed as having psychological illness despite their protestations to the contrary.

“With the benefit of modern medical knowledge, Freud’s patients can be seen to have been relating histories that point clearly towards physical illnesses that weren’t known or diagnosable at the time.”

She concludes: “All too often, the medical profession ignores one of the most important lessons to be learned from Freud’s story – that, if we are unable to explain a patient’s symptoms, the reason may not be that the symptoms are psychosomatic but simply that our knowledge is imperfect.” (The dark side of Freud’s legacy (letter). BMJ 2009; 338: b1606).

Eventually, ICD-11 will be replaced by ICD-12, which in turn will rapidly become out of date.

CISSD is not a devious plot to “psychiatrise” M.E. Rather it should be seen as an honest attempt to rationalise an issue which has only arisen because medical knowledge is incomplete and which, at the end of the day, is no substitute for detailed scientific research to unravel the fundamental basis of this illness.

Dr Pheby is Project Coordinator for the National CFS/M.E. Observatory. He was formerly Chair of the Project Assurance Team at the NHS Centre for Coding and Classification. Read his report of the IACFS conference on p 12.

InterAction 69 August 2009

http://www.afme.org.uk

Posted in A4e, AfME, Action for M.E., CISSD Project, DSM revision process, Elephant Series DSM-V, ICD revision process, ICD-11, Institute of Psychiatry, ME Association, MUPSS Project, MUS, WHO (World Health Organization), WHO Collaborating Centre | Comments Off

The Elephant in the Room Series Three: Channel 4: Benefit Busters; A4e and the Sykes brothers

Posted by meagenda on August 14, 2009

elephant3

Image | belgianchocolate | Creative Commons

Keywords

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

The Elephant in the Room Series Three:

Channel 4: Benefit Busters, A4e and the Sykes brothers

WordPress Shortlink for this posting: http://wp.me/p5foE-1RY 

The CISSD Project (Conceptual Issues in Somatoform and Similar Disorders), co-ordinated by Dr Richard Sykes, PhD, between 2003 and 2007, and administered by UK patient organisation, Action for M.E., was funded by The Hugh and Ruby Sykes Charitable Trust to the tune of £62,750.

The recommendations of the CISSD Project and papers that resulted out of its workshops have fed into the revision processes towards DSM-V and ICD-11.

Dr Sykes is currently engaged in the London Medically Unexplained Physical Symptoms and Syndromes (MUPSS) Project for which he receives a research award from the Institute of Psychiatry for £27,000 per year.

This award is also funded by a grant from The Hugh and Ruby Sykes Charitable Trust.

We are still waiting for the ME Association and for Action for M.E. to provide analyses of the CISSD Project and commentary on the DSM and ICD revision processes.

I call upon both organisations to report on the nature and purpose of the MUPSS Project, too, for it is not yet known how the MUPSS Project is being carried out, who is involved in it or who its stakeholders are, but Dr Sykes is reported as having said that the Project has relevance to “all conditions characterised by medically unexplained symptoms, not just CFS/ME”.

Virtually nothing is known at present other than that the Project relates to what Dr Sykes perceives as “medically unexplained symptoms (MUS)” and that he includes within this category, “CFS/ME”.

Dr Richard Sykes and Sir Hugh Sykes are brothers.

Sir Hugh Sykes is a non executive director of A4e (Action for Employment) – the largest European provider of Welfare to Work programmes.

For links for information on A4e see:  The WHO Somatisation Project: The Elephant in the Room Part Six

Sir Hugh has authored pamphlets for the right-wing think-tank “Politeia”, see:

http://www.politeia.co.uk/about/default.asp

“Politeia, a forum for social and economic thinking, opened in November 1995 as a focus for thinking on social and economic policy. Its aim is to encourage reflection, discussion and debate about the place of the state in the daily lives of men and women across the range of issues which affect them, from employment and tax to education, health and pensions.”

Current areas for work include:

Tax and benefits: a fairer framework for incentives;
The potential consequences of the Euro or other European measures for British social and economic policy, employment, taxation and trade;
International comparisons of educational standards;
Policies for high employment: the role of the state, the employer and the employee;
Covering for lost income: health, long term care, pensions and unemployment Welfare reform, pensions, benefits and taxation;
Constitutional change and stability;
Policing in the UK”

Sir Hugh is the author of

“Working for Benefit”
Hugh Sykes
£5.00

Although it continues to fall, unemployment remains a serious problem both economically and socially. Does it not make better sense, asks Hugh Sykes, to pay people to work than, as the present benefits system does, to remain idle? The workfare scheme he proposes here would achieve a reduction of at least 200,000 in unemployment over three years. Developing from and extending the government’s own schemes, it is – unlike other schemes suggested by left and right – both straightforward and detailed enough to be put into practice immediately. It gives incentives to employers to create, and to the unemployed to take, real productive jobs, whilst also providing opportunity to work where such jobs are not available. NERA, the leading experts on the economies of workfare, have provided technical advice and data for the scheme.”

and

“Welfare to Work – The New Deal: Maximising the Benefits”
Hugh Sykes
£5.00

The New Deal – the government’s welfare to work scheme – aims to increase employment in the long term by helping some of the unemployed to become more employable, thereby increasing the pool of effective labour and so facilitating sustainable economic expansion. Sir Hugh Sykes, until recently Chairman of the Sheffield Development Corporation, welcomes the scheme and its aims. But, he argues, there are serious problems in implementing the scheme which should be urgently addressed. The fact that the scheme does not aim to create new jobs in the short term will cause widespread disappointment, unless the public is given a better understanding of the scheme’s aims. Sir Hugh also contends that the scheme should aim at short-term job creation – something which will be possible if it can be flexibly implemented in the regions, rather than rigidly run from the centre, and if it takes proper account of regional and local priorities.”

 

Later this month, Channel 4 begins a series called “Benefit Busters”:

http://www.channel4.com/programmes/benefit-busters

Benefit Busters

Series Summary

In 2009, Britain will pay out more in benefits than it raises in income tax. Welfare and pension payments cost more than education, health or defence.

Now, as the government attempts to revolutionise the welfare system – controversially rewarding private companies according to their ability to coax people off benefits and into jobs – this documentary series follows the people on both sides of this new welfare state.

Watch again on:

http://www.channel4.com/programmes/benefit-busters/4od

Series | Episode 1 | Benefit Busters  [48 mins]

Hayley Taylor’s job is to persuade single mothers on benefits to go back to work.

The company she works for, A4E, which is helping to tackle the Government’s target of getting 70 per cent of lone parents into paid work by 2010, is the largest welfare reform company in the world.

A4E is run by multimillionaire entrepreneur Emma Harrison, who believes her business is ‘improving people’s lives by getting them into work.’

Until recently, the 700,000 lone parents receiving benefit didn’t have to look for work until their youngest child was 16. Soon, they must either work, or be looking for work, once their youngest child is seven.

At Doncaster A4E, Hayley runs a course called Elevate that aims to give lone parents the skills and confidence to enter the workplace and convince them they’ll be better off doing so. Cameras follow her group of ten single mothers during their intensive six-week course to prepare them for work.

Next Episode: Thu 20 Aug, 9PM on Channel 4, Monday 24 August 4AM Channel 4

 

Series 1 | Episode 2 | Benefit Busters

Unemployment is rife in Hull, but for one company business is booming: A4E has won the lucrative contract to help get the long-term unemployed back to work. Mark Pilkington is an ex-soldier who hasn’t worked for 10 years. He welcomes help and within a fortnight he finds a job. But the joy of receiving his first pay cheque is short-lived; after just four weeks a business downturn results in Mark being laid off.

Facing a return to A4E and potentially a four-week wait to restart his benefit payments, Mark begins to wonder if there is more security in a life on benefits.

It appears to be a shockingly common perception amongst the clients at A4E, who are at the mercy of an increasingly casual labour market.

Date Time Channel
Thursday 27 August 9PM Channel 4

 

Series 1 | Episode 3 | Benefit Busters

One of the government’s targets is to shift one million people off long-term sickness benefits and get them back to work.

In Oldham, the charity Shaw Trust* has won the contract to implement this policy.

Sherrie Jepson, a former car saleswoman, has the job of selling the idea of employment to people who were previously considered too sick to work.

Keiron Tandy fell from a third-floor balcony while celebrating his 18th birthday in Turkey. He has metal pins in his back and has restricted mobility.

His family doctor had confirmed him as ‘unfit for work’ but under the new system he’s examined by an independent medical examiner employed by a private health care company, which will determine whether he is fit enough to return to work. Meanwhile, Sherrie starts to try to convince Keiron that he could work if a suitable job that allowed for his condition could be found.

*The Shaw Trust

 

Shaw Trust accounts show crippling cost of DWP contracts

By John Plummer | Third Sector Online |10 August 2009

Charity blames Pathways to Work programme for huge deficit

The Shaw Trust made a £2.8m loss in 2008/09 compared with a surplus of £7.4m the previous year, according to its annual report.

The charity, which is the largest voluntary sector provider of employment services for disabled people, blamed the loss on the huge start-up costs involved in delivering Pathways to Work programmes on behalf of the Department for Work and Pensions.

“The DWP funding structure is making it more difficult for charities to deliver services,” said Catherine A’Bear, chief officer for corporate affairs at the trust.

“We are one of the few charities still in the business of providing services for disabled people under DWP contracts, and when you see how heavily we have had to invest in it you can see why.”

She said the start-up costs involved in setting up services and recruiting staff for Pathways to Work were so high that private companies were increasingly the only ones that could afford to bid. “The voluntary sector is seen as a sub-contractor,” said A’Bear.

The trust’s annual income increased by £8.48m to £81.39m during the same period, of which £45.8m came from the DWP. But this was offset by rising costs. Wages and salaries rose from £37m to £43m.

John Briffitt, chairman of the trust, says in the annual report: “There’s no denying that the Shaw Trust’s financial performance, like that of many other organisations in our field, has been adversely affected by the challenging economic environment.”

He said “past prudence” had built up sufficient cash resources to help it cope.

The 2008/09 financial year was a turbulent one for the trust, with chief executive Ian Charlesworth put on gardening leave pending dismissal in July 2008. The annual accounts say he resigned on 12 December.

——————————

For information on the development of DSM-V which is to be harmonised for congruency with ICD-11, and on the CISSD Project, see:

http://meagenda.wordpress.com/dsm-v-directory/

Compiled by Suzy Chapman
http://meagenda.wordpress.com

Posted in A4e, Benefits, CISSD Project, DSM revision process, DWP, Elephant Series DSM-V, Employment legislation, ICD revision process, Institute of Psychiatry, MUPSS Project, MUS, WHO (World Health Organization), Welfare reform | Comments Off

BBC Radio 4: Rewriting The Psychiatrist’s Bible Tuesday 4 August

Posted by meagenda on July 30, 2009

Update:  Available via BBC iPlayer until

8:42pm Tuesday 11th August 2009

http://www.bbc.co.uk/iplayer/episode/b00kf117/Rewriting_the_Psychiatrists_Bible/

 

http://www.bbc.co.uk/pressoffice/proginfo/radio/2009/wk31/7day.shtml

Rewriting The Psychiatrist’s Bible

Tuesday 4 August

8.00-8.40pm BBC Radio 4  |  Sky 0104  |  Freeview 704

Matthew Hill explores the ties between psychiatry and the pharmaceutical industry, in Rewriting The Psychiatrist’s Bible.

The Diagnostic And Statistical Manual Of Mental Health Disorders (DSM) is currently being revised. It has a huge influence, not only in the United States where it is published by the American Psychiatric Association (APA), but globally. In Britain, most psychiatrists would not get their work published if they did not follow the DSM diagnostic guidelines.

Panellists are selected by the APA. Its critics say the manual provides an invaluable service for the drug industry by defining new conditions for which new drugs can be marketed. Previous editions have been heavily criticised for a lack of transparency between the panel members and pharmaceutical companies. But the last edition was published in the Nineties and the APA says that things have changed since then and that this time it will be different. Members of the panel have to declare their interests and there is a limit to the amount they can earn from outside interests.

Also under review is the “Chinese Menu” aspect of its diagnostic criteria and the sheer number of conditions it includes. Many British psychiatrists are concerned about the prospect of bipolar disease in children being added to the next edition – not least because the drugs used to treat the disorder have serious side effects.

For the fifth edition, new conditions under consideration include shopping addiction, internet addiction and sex addiction.

Rewriting The Psychiatrist’s Bible investigates whether the APA’s new transparency policy goes far enough and whether real conditions are being medicalised or just traits of human personality.

Presenter/Matthew Hill, Producer/Geraldine Fitzgerald

BBC Radio 4 Publicity

Repeated Sunday 9 August 5.00pm and should also be available on R4 iPlayer

Posted in CISSD Project, Criticism of DSM-V, DSM revision process, Elephant Series DSM-V, ICD revision process, ICD-11, MUPSS Project, MUS, Simon Wessely, WHO (World Health Organization), WHO Collaborating Centre, WHO Somatisation Project | Comments Off