CISSD Project: Report from Dr Richard Sykes

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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

 

If you have arrived at this site via a link on a CFS related Wikipedia article or Talk page please read this posting first:

https://meagenda.wordpress.com/2009/06/10/the-elephant-in-the-room-series-two-status-of-the-cissd-project-unscrambled/

The report by Dr Richard Sykes, below, contains information about the aims, objectives and administration of the CISSD Project that Action for M.E. (Principal Administrators for the Project) sought not to disclose to its membership and to the wider ME community. The CISSD Project ran from 2003 to 2007 – it has taken years for much of this information to reach the public domain.

The sum total that Action for M.E. has published to date on the aims and objectives of the CISSD Project amounts to the following:

“WHO Somatisation Project    Incoming Resources 2006: £24,000    Outgoing Resources 2006: £24,000

“This grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its re categorisation as a physical illness.”
—————-

“WHO Somatisation Project    Incoming Resources 2007: £18,750    Outgoing Resources 2007: £18,750

“This grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its recategorisation as a physical illness. This grant ceased in March 2007.”
—————-

“CISSD Project    Restricted Funds 2008: £20,000    Total Funds 2008: £20,000

“This grant, from the Hugh and Ruby Sykes Charitable Trust is provided to disseminate the findings of the WHO Somatisation Project whose research came to an end in 2006. The aim is to produce a number of recommendations which, if accepted by the World Health Organisation, would be of direct benefit to people with M.E.”

 

Since 10 March 2009, I have been liaising with the Institute of Psychiatry for, amongst other information and documents, a copy of any report tendered to the WHO Collaborating Centre by Dr Richard Sykes.  These requests for information have been made under the FOI Act. 

Although some information has been provided to me, in relation to the CISSD Project and to Dr Sykes’ latest project, the “MUPSS Project”, I was advised by the Institute of Psychiatry’s Legal Compliance department that a final report had been provided to the WHO Collaborating Centre but that Dr Sykes had arranged for a report and other detailed information to be made available in the near future on the ME Association’s website and in their magazine (ME Essential) and that therefore it was consider that this information was exempt under Section 21 of the Act (information accessible by other means).

Today, the following report has been published on the ME Association’s website and a copy has also been provided to me by the Insitute of Psychiatry. I have also received, today, responses to further enquiries made under the Act pertaining to the funding of the CISSD Project; this additional information which is not included in the report, below, will be published on ME agenda in due course.

Note 1) Frankie Campling, member of the CISSD Project Work Group and listed as a Patient Representative, has co-authored books on CFS with Professor Michael Sharpe.

Note 2) Francis Creed, CISSD Project Work Group member, is a co-editor of  the Journal of Psychosomatic Research which published the papers and articles listed under Publications, excluding the review paper by the CISSD Project leads, Kroenke, Sharpe and Sykes which was published in July/August 2007 edition of Psychosomatics.

Note 3) I am advised by the Institute of Psychiatry that no Conflict of Interest Disclosures were required of members of the CISSD Project.

Note 4) Dr Sykes states that seven of the CISSD project participants have now been invited to join the formal DSM revision groups.  Michael Sharpe (UK), Francis Creed (UK), James Levenson (US) and Arthur Barsky (US) are now members of the APA’s DSM-V Work Group for Somatic Symptom Disorders; Javier Escobar (US) is a member of the DSM-V Task Force group but has also been listed as a collaborator of the Somatic Symptom Disorders Work Group in the Editorial: The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report. Psychosom Res. 2009 Jun;66(6):473-6. Epub 2009 Apr 16.

This Editorial by Francis Creed and Joel Dimsdale, provides the most recent and comprehensive update on the progress of the DSM-V Somatic Symptom Disorders Work Group.

Free access to both text and PDF versions of this Editorial at:

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

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

———————————————–

Report as published by the ME Association 3 June 2009

http://www.meassociation.org.uk/content/view/878/161/

CISSD Project: Report from Dr Richard Sykes

There has been a great deal of internet discussion about this project – so The ME Association asked Dr Richard Sykes if he could produce a report summary that could be placed on our website in order to explain the background, implications and conclusions.

Please note that The MEA has not had any input into or involvement with the CISSD Project.

 

THE CISSD PROJECT 2003-2007

(Conceptual Issues in Somatoform and Similar Disorders)

SUMMARY REPORT

This report is in three parts. The first describes the nature, achievements and potential impact of the project overall. The second describes its activities and achievements in relation to Chronic Fatigue Syndrome (CFS). The third gives a brief concluding review. (The term “CFS” will be used in this report rather than CFS/ME”. Although “CFS /ME” is the preferred term in the UK, “CFS” is the term used internationally.)

PART 1 THE CISSD PROJECT – GENERAL REVIEW

1.1 Impetus for project

The impetus for the CISSD project came from 4 main sources.

The first was the suggestion made by some psychiatrists and others that CFS should be considered a “mental” disorder, falling within the category of “somatoform” disorders. This suggestion had caused great difficulties in doctor-patient communication, since patients with CFS generally consider their illness to be a physical, not a mental, disorder.

The second was the evident conceptual confusions and other difficulties surrounding the concept of somatoform disorder. These had led some researchers to call for an abolition of the whole category of somatoform disorders (1).

The third was the background of the co-ordinator, which included work for a charity for people with CFS and prior training and research in linguistic philosophy (Appendix D)

The fourth was the impending revision of the international classifications, due from 2012 onwards. For practical and operational reasons, the two main international classifications are only rarely reviewed and revised. However, a major review is to be undertaken from 2012 onwards, which presents an opportunity for input from major stakeholders. This project was an attempt to provide such input.

From this background it seemed reasonable to expect that there would be major benefits if clarity and widespread agreement could be reached about how the conditions now listed as Somatoform Disorders could better be characterised and classified. This could not only facilitate international communication and research in the field of somatoform and similar disorders but could also help to resolve classification difficulties in relation to CFS. This led to the idea of an international and interdisciplinary group to investigate the problems and to make a preliminary contribution towards more satisfactory classifications.

1.2 Somatoform disorders and the International Classifications

Somatoform Disorders are a class of Mental Disorders that are listed in the two main internationally used classifications of Mental Disorders – the International Classification of Diseases (ICD) produced by the World Health Organization (WHO) and the Diagnostic and Statistical Manual (DSM) produced by the American Psychiatric Association (APA). ( See also Appendix D.)

While ICD is the official WHO classification of all diseases and disorders and is used worldwide for the recording of health data, DSM is concerned only with “Mental Disorders” and is primarily designed for use in the USA. Nevertheless DSM has established a very high reputation and is often used in research studies, both in Europe and internationally, in preference to the ICD section on “Mental and Behavioural” Disorders.

In ICD-10, the latest edition of ICD, every disease or disorder is listed either in the section on “Mental and Behavioural Disorders” or it is listed elsewhere in ICD-10. One general term that is used to refer to disorders listed elsewhere in ICD-10 is “General Medical Condition”.

“Mental and Behavioural Disorders” is often shortened, both popularly and by DSM, to simply “Mental Disorders”. For “General Medical Condition” a popular equivalent is “Physical Disorder”.

This yields a contrast between “Mental Disorders” and “Physical Disorders”. The contrast is both exhaustive and exclusive. It is exhaustive in that there are no other types of disorders besides mental disorders and physical disorders. It is exclusive in that no disorder can be both a mental and a physical disorder (Note 2). Consequently any considerations which weaken the claim for a disorder to be classified as a mental disorder implicitly strengthen the claim for it to be considered a physical disorder.

1.3. Aims and evolution of the Project

In the early stages the aims of the project were defined as follows: “The production of a report by an international and multi-disciplinary expert group on Conceptual Issues in Somatoform and Similar Disorders. Topics to be discussed include key terms and their definitions and concepts such as psychological association and causation.  Wider issues such as the distinction between physical and mental illness will also be considered. The report will set out the conceptual problems involved, will discuss different possible solutions and will make recommendations. It will be presented to the WHO and the APA by December 2006.”

As discussions developed, they tended to concentrate on the more specialist issues relating to Somatoform Disorders rather than on the wider underlying concepts. Much attention, for example, has been given to the category of Somatization Disorder – whether the category should be retained and, if so, on the need for less restrictive criteria for the disorder. Additionally, the ending of the project was extended from December 2006 to October 2007.

1.4. Scope and Nature of Project

Salient features of the project include the following:

(a) It was an independent and innovative project. It was not specifically commissioned by the WHO or the APA. It originated from a personal concern about the problems for CFS and the evident confusions and difficulties associated with Somatoform Disorders.

(b) It was a low cost project with a strictly limited budget. CISSD consultants contributed their own time without payment in addition to their usual duties.

(c) The scope of the project was the whole field of Somatoform Disorders rather than purely the classification of CFS.

(d) Its wide scope and limited budget meant that it was a background project, designed to provide helpful suggestions and recommendations on some topics rather than final answers on all issues.

(e) The project was interdisciplinary and international and was thus able to cover a wide range of opinion.

(f) The intention and practice was open exploration of the relevant issues rather than the promotion of a particular viewpoint.

(g) Although participation was open to all relevant disciplines, it turned out that, due to the nature of the subject, the large majority of the participants were psychiatrists.

1.5 Membership

Membership of the project was open to anyone with a professional interest in Somatoform Disorders. The number of consultants and contacts grew from a small nucleus at the start of the project to a total of over 80. Of these, 44 played an organisational or active or advisory role. They settled into four groups. (See appendix B for a list of the “active” and “advisory” consultants.)

Organising Group

Chair: Prof. Kurt Kroenke
Professor of Medicine, Regenstrief Institute, Indianapolis, USA
Co-Chair (UK): Prof. Michael Sharpe
Professor of Psychological Medicine, Edinburgh University.
Principal Collaborator: Prof. Rachel Jenkins
Professor of Psychiatry, WHO Collaborating Centre, Institute of Psychiatry, London University.
Project Advisor: Prof. John Bradfield
Emeritus Professor of Histopathology, Bristol University.
Co-ordinator: Dr. Richard Sykes
Hon Visiting Research Associate, WHO Collaborating Centre, Institute of Psychiatry, London University.

“Active” Consultants

There were 28 “active” consultants who attended workshops, or took part in formal discussions. The majority were Psychiatrists but there were also expert members from Pathology, Primary care, Psychology, and Philosophy. Among this interdisciplinary group were participants from the UK (10), the USA (7), The Netherlands (5), Germany (4), Denmark (1) and Norway (1),). They included researchers, clinicians, a patient representative and a research assistant. Some are already involved in the preparation of DSM-V.

“Advisory” consultants
There were a further 11 “advisory” consultants, from the USA (7), the UK (2) and Switzerland (2). These all discussed the project with the co-ordinator and made helpful comments and suggestions.

“Additional” consultants
The many “additional” consultants all expressed an interest in the project and a willingness to be consulted. Their  interest was encouraging and most welcome.

1.6 Activities

There were three formal CISSD Project International Workshops:

. London – May 2005
. Oxford – March 2006
. Indianapolis – May 2006.

Nine CISSD Bulletins have been circulated to consultants and contacts to provide information about project developments and discussions.

A workshop entitled “Conceptual Issues in Somatoform and Similar Disorders” and chaired by the CISSD project co ordinator, was held at the 27th European Conference of Psychosomatic Research in Cavtat, Croatia, in September 2006.

In addition, several project members have given presentations at international conferences and workshops during the life of the project.

1.7 Publications

From the London 2005 workshop, 8 papers were published in the April 2006 issue of the Journal of Psychosomatic Research. A final paper, summarising the project discussions and recommendations, was published in the July/August 2007 issue of Psychosomatics. (The papers are listed in Appendix A).

1.8. Main recommendations

Recommendations were made on 3 main types of issues – Category Issues, Terminological Issues, and Stakeholder Issues. The full recommendations are given in the article by Kroenke K, Sharpe M and Sykes R Revising the classification of Somatoform Disorders. Key Questions and Preliminary Recommendations in: Psychosomatics July/August 2007; 48:277-285. A very brief summary is given below.

FREE Text:  http://psy.psychiatryonline.org/cgi/content/full/48/4/277
FREE PDF:   http://psy.psychiatryonline.org/cgi/reprint/48/4/277  

Category Issues
One of the key category issues is whether the whole category of Somatoform Disorder should be abolished, as some advocated. Agreement was not reached on this key issue. Consequently, in addition to some unequivocal recommendations, some qualified recommendations are made, dependent on whether or not the category of Somatoform Disorder is retained.

Unequivocal category recommendations
1. The category of Pain disorder should be deleted. All pain symptoms should be coded on Axis III with concomitant  psychiatric co-morbidity coded on Axis I.
2. The category of Undifferentiated Somatoform Disorder should be deleted.
3. Revised criteria are needed for Hypochondriasis.

Qualified category recommendations (Either A or B)
A If the category of Somatoform Disorder is retained,

A1 The criteria for Somatization Disorder should be made more inclusive (less restrictive).
A2 The diagnosis of a Somatoform Disorder (or other psychiatric disorder) should not be made solely on the basis that the symptoms of the disorder are medically unexplained. Positive “psychological” criteria are also needed.

Or B If the category of Somatoform Disorder is abolished,
B1 Hypochondriasis could be placed with the Anxiety disorders.
B2 Conversion Disorder could be placed with Dissociative disorders.
B3 Body Dysmorphic Disorder could be placed with Obsessive-Compulsive Disorder.
B4 Somatization Disorder could be regarded as a combination of Personality Disorder and Affective or Anxiety disorder.

Terminological Issues
1. Where possible, language that gives offence to patients should be avoided.
2. “Hypochondriasis” should be replaced by “Health Anxiety Disorder”.
3 Replacement terms are needed for “Pseudoneurological”, “Doctor Shopping”.
4 The terms “Somatoform”, “Somatization”, “Functional” need review.

Stakeholder Issues
1. An important question is to what extent the views of patients and of non-psychiatric clinicians should be considered.

These recommendations have been submitted to the ICD revision website and have been brought to the attention of the Revision Committees of the WHO and the APA. We trust that they will make a positive contribution to the difficult task of producing a more satisfactory classification of the conditions now classified as Somatoform Disorders.

1.9. Achievements

From modest beginnings the project developed into a high calibre project. It was chaired by Professor Kurt Kroenke, perhaps the foremost international researcher in the field of symptoms that are not well understood. It succeeded in attracting many of the leading international experts on the topic. (For a list of participating consultants, see App B).

The project was marked by rationality and mutual respect. When opinions differed, as they frequently did, arguments were exchanged in a rational manner. This is strikingly different from many previous discussions where the nature of CFS has been debated with psychiatrists, which have frequently yielded more heat than light. This atmosphere of rationality and mutual respect led to discussions that were productive as well as informative for participants (See Appendix C for some comments from participants).

In view of the way in which the project was set up, there was no attempt to thrash out complete or final answers to all the many and diverse problems associated with the category of Somatoform Disorders. Several key issues such as, “What makes a disorder a mental disorder rather than a physical disorder?” were barely touched on. Similarly, on the key issue “Should the category of Somatoform Disorders be abolished?” no agreement was reached. These important topics await further examination.

Despite the constraints imposed by the scope and nature of the project, the final published report can claim two clear achievements. It made a number of important recommendations and it placed firmly on the international agenda a number of key issues.

1.10. Overall impact

The ultimate test of the overall impact of the project will lie in how many of the project’s recommendations are incorporated in the next revisions of ICD and DSM and in what answers are given to the issues that have been highlighted. This will not be known until 2012 or later when the revised classifications are produced.

In the meantime, in attempting to assess the likely impact of the project, the constraints within which the project operated need to be kept in mind. This was an independent project with a restricted budget which aimed to make a limited background contribution to a complex task.

Despite its limitations, there are reasons for thinking that the impact will be considerable. In the first place the changes proposed have been backed by careful arguments and these have been tested in high-level discussions. Secondly, the recommendations were backed by the large majority of the participants, among whom were many of the foremost international experts in the field. Thirdly, seven of the CISSD project participants have now been invited to join the formal DSM revision groups. Fourthly, many of the consultants, including myself, have been involved in other workshops and conferences internationally and will continue to be involved in further international conferences.

PART 2 THE CISSD PROJECT AND CFS

2.1 Background

There is a major problem for people with CFS that arises from the claim, made by many psychiatrists and others, that CFS should be regarded and classified as a Mental Disorder, specifically as a Somatoform Disorder. This claim has caused great offence and concern to patients and has often led to major difficulties in doctor-patient communication. Patients generally consider that their illness is a physical disorder and that to regard it a mental disorder indicates medical misunderstanding and can lead to mistreatment.

As mentioned earlier, these disputes were the starting point for the CISSD project. They led to questions such as “Why should CFS be considered a Somatoform Disorder?”, “What precisely are Somatoform disorders?” “How should they be described and defined?” “Why should they be considered Mental Disorders?” Etc.

In trying to find answers to these questions, it became clear that there were many complex issues involved and that the answers were not simple.

2.2 Somatoform Disorders, the International Classifications and CFS

There are still problems associated with the classification of CFS. It is true that CFS is listed under “syndrome” in Volume III, the Index, of ICD-10 and placed in G93.3, a category of neurological illness. But there remain the problems:

(1) some psychiatrists and others contest this classification of CFS as a neurological disorder,

(2) “fatigue syndrome” is listed in ICD-10 as F48, a mental disorder – which creates the apparent anomaly that “fatigue syndrome” is a mental disorder, but “chronic fatigue syndrome” is a neurological disorder, and

(3) the classification of CFS as a neurological disorder does not seem to be fully integrated into ICD-10.

As far as I have discovered this seems to be the only reference to CFS in all the relevant ICD -10 volumes. For example, CFS is not mentioned in main Volume 1, the Tabular List, of ICD-10 – where one would expect it to be – nor is it included in the current (2007) online version of ICD-10.

It is also true that the WHO gave permission in 2004 for the UK adaptation of the WHO primary care management and diagnostic guidelines on mental health, which in this edition expanded to include some common neurological conditions. This edition of the good practice diagnostic and management guidelines follows the ICD-10 Index code for CFS as G93. It remains to be seen, however, whether this practice will be followed in ICD-11.

2.3 Achievements in relation to CFS

As already mentioned, the focus of the project was on the whole field of Somatoform Disorders, rather than on CFS. Nevertheless, three of the recommendations made and two of the issues highlighted are important and relevant to the classification of CFS. They bring out considerations which undermine the case for classifying CFS as a mental  disorder and so implicitly support the case for classifying CFS as a physical disorder.

The first of the three recommendations is that the subcategory of “Undifferentiated Somatoform Disorder” is deleted. This is the main subcategory or “pigeonhole” in DSM-IV where some psychiatrists have wished to place CFS. (See also Note 3)

The second recommendation is that, if the category of Somatoform Disorder is retained, some kind of “psychological” criterion should be added to the existing characterization of Somatoform Disorder. This recommendation takes the debate to a deeper level and is somewhat technical. But its immediate effect is to make it more difficult to classify CFS as a Somatoform Disorder. It also has a further, more subtle effect, in that it raises an additional difficulty about the whole category of Somatoform Disorder. Because finding an adequate psychological criterion is likely to prove very difficult, this recommendation in effect adds another argument in favour of dispensing with the whole category of Somatoform Disorder (within which is the subcategory of Undifferentiated Somatoform Disorder) and so removing the suggested pigeonhole for CFS.

The third recommendation is that, if possible, language that gives offence to patients should be avoided. This recognition that the perspective of the patient should be taken into consideration could lead to discarding terms such as “pseudoneurological”, “doctor-shopping” and similar derogative terms which have been applied to the symptoms and behaviour of people with CFS.

The first issue that that was placed clearly on the agenda for discussion was whether the whole category of Somatoform Disorders should be abolished. Since the abolition of the whole category would remove a pigeonhole for CFS, this is clearly very relevant.

The second issue that was highlighted was the extent to which the views of patients should be taken into consideration in drawing up formal classifications of disorders. Until very recently the classification of disorders has generally been considered a purely professional issue. Since patients with CFS tend to have strong views that CFS should not be considered or classified as a mental illness, this is also very relevant.

2.4 Impact in relation to CFS

Although the focus of the project was Somatoform Disorders in general rather than CFS, the project is likely to have significant influence on the classification of CFS. Some of the difficulties in classifying CFS as a Somatoform Disorder, and hence a mental disorder, are now appreciated and debated by a large number of the leading experts in the field, several of whom are on the relevant committees that will debate and construct the next revision of DSM-IV.

The issue of patient participation is clearly on the agenda and it seems reasonable to expect that the views of patients will be given greater weight than in the past. I was able to make limited personal contributions to this process in discussions with individual experts and with papers presented at international conferences.

In bringing out objections to classifying CFS as a Somatoform Disorder, the CISSD project will have strengthened the case for classifying CFS as a neurological disorder.

PART 3 CONCLUDING REVIEW

3.2 Achievements and Impact

In spite of starting as an independent project with a limited budget, the CISSD Project developed into a high calibre  international venture that attracted many of the leading experts in the field of Somatoform Disorders. It produced several journal articles and a final published report which made a number of recommendations and highlighted some key issues for Somatoform Disorders generally.

The final impact of the project will not be known until the international revisions are produced from 2012 onwards. In the meantime there are good reasons for thinking that the CISSD project will make a significant contribution to future international communication and research and will be influential in shaping final decisions in the field of Somatoform Disorders. The project’s recommendations were backed by detailed arguments and were supported by leading experts, several of whom are directly involved in revising the international classifications.

Three of its recommendations are relevant and important for CFS and strengthen the case for classifying CFS as a physical rather than as a mental disorder. Two of the key issues highlighted are also very relevant and important for CFS.

The work of the CISSD project has strengthened the case for classifying CFS as a neurological disorder, rather than as a mental disorder.

3.2. Acknowledgements and Appreciation

The project was supported by grants from the Wellcome Trust, administered by Edinburgh University and from the Hugh and Ruby Sykes Charitable Trust, administered by the registered charity Action for ME (AfME).

As co-ordinator, I held appointments as Hon Visiting Research Associate at the Institute of Psychiatry, University of London and as Consultant to Action for ME.

I would like to express my most appreciative thanks to all those who gave support to the project: to the funding bodies and to AfME for their indispensable support: to Natalie Banner for her most helpful research assistance; to all the consultants who not only most generously donated their time and knowledge but did so in a most friendly and co-operative way.

Most of all, my warmest thanks go to the organising group for their consistent support; to Rachel Jenkins for her invaluable help as Principal Collaborator; to John Bradfield, the Project Advisor, whose patient and perceptive comments on numerous draft documents were invaluable; to Michael Sharpe for his encouragement and work as Co chair UK; and, above all, to Kurt Kroenke for giving us the benefit of his internationally acclaimed expertise and for chairing the project so vigorously and effectively. My heartfelt thanks to all.

Richard Sykes PhD, CQSW

References

1. Mayou R, Kirmayer LK, Simon G, Kroenke K, Sharpe M Somatoform Disorders:
Time for a New Approach in DSM-V. Am J Psychiatry 2005; 162:847-855.

Notes

Note 1. I am most appreciative of the help given by Professor John Bradfield, former Professor of Histopathology at Bristol University, in compiling this report. In addition, he has made numerous other most valuable contributions as Project Advisor to the CISSD Project.

Note 2. There are, most confusingly, a few exceptions to this rule in ICD-10. For example, Irritable Bowel Syndrome is classified both as a disorder of the Digestive System (K 58) and as a Somatoform Autonomic Function Disorder (F45.32) – a mental disorder.

Note 3. The situation is more complex in ICD-10, since ICD-10 includes, besides Somatoform Disorders, a further possible pigeonhole for CFS/ME. This is the subcategory of “Neurasthenia” which ICD-10 includes in addition to the category of Somatoform Disorders. While the project did not specifically address the problems associated with Neurasthenia, there are some strong objections to this subcategory and it is possible that Neurasthenia will be omitted in the next revision of ICD-10.

Appendices

Appendix A Published articles resulting from the CISSD project

1. Final summary article

Kroenke K, Sharpe M, Sykes R Revising the classification of Somatoform
Disorders. Key Questions and Preliminary Recommendations: Psychosomatics 2007; 48:277-285.

2. Other articles

Levenson JL (Editorial) A Rose by any other name is still a rose J Psychosom Res 2006; 60: 325-326.

Bradfield JWB A pathologist’s perspective of the somatoform disorders J Psychosom Res 2006; 60: 327-330.

Creed F Can DSM-V facilitate productive research into the somatoform disorders? J Psychosom Res 2006; 60: 331-334.

Kroenke K Physical Symptom Disorder: A simpler diagnostic category for somatization-spectrum conditions J Psychosom Res 2006; 60: 335-339.

Sykes R Somatoform disorders in DSM-IV: Mental or Physical disorders? J Psychosom Res 2006; 60: 341-344.

Hiller W Don’t change a winning horse J Psychosom Res 2006; 60: 345-347.

De Gucht V, Maes S Explaining medically unexplained symptoms: Toward a multidimensional theory-based approach to somatization J Psychosom Res 2006; 60: 349-352.

Sharpe M, Mayou R, Walker J Bodily Symptoms: New approaches to classification J Psychosom Res 2006; 60: 353-356.

Appendix B List of consultants

Organising Group (5)
Chairman: Prof Kurt Kroenke, Professor of Medicine, Regenstrief Institute, Indianapolis, USA
Co-Chair (UK): Prof Michael Sharpe, Professor of Psychological Medicine, Edinburgh Univ
Principal Collaborator: Prof Rachel Jenkins, WHO Collaborating Centre, Institute of Psychiatry, London Univ
Project Advisor: Prof John Bradfield, former Professor of Histopathology, Bristol Univ
Co-ordinator: Dr Richard Sykes, Hon Visiting Research Associate, Institute of Psychiatry, London Univ

“Active” Consultants (28) – who attended one or more of the three workshops or were significantly involved in discussions or publications.

UK (10)
Prof Derek Bolton, Professor of Philosophy and Psychopathology, Institute of Psychiatry, London University
Dr Richard J Brown, Lecturer in Clinical Psychology, University of Manchester
Frankie Campling, Patient Representative, Oxford
Dr Rachel Cooper, Lecturer in Philosophy, Lancaster University
Prof Francis Creed, Professor of Psychological Medicine, Manchester University
Dr Richard Kanaan, Clinical Lecturer, Institute of Psychiatry, London University
Prof Richard Mayou, Professor of Psychiatry, University of Oxford
Dr Ruth Taylor, Senior Lecturer in Liaison Psychiatry, London University
Professor Michael Trimble, Professor of Behavioural Neurology, Institute of Neurology, London
Research Assistant Natalie Banner

USA (7)
Prof Arthur Barsky, Prof of Psychiatry, Harvard Medical School, Boston, Mass.
Dr Charles Engel, Assoc Prof of Psychiatry, Uniformed Services University, Washington, DC
Prof Javier Escobar, Prof of Psychiatry, Robert Wood Johnson Medical School, New Jersey
Prof James Levenson, Prof of Psychiatry, Medicine and Surgery, Virginia Commonwealth University, Richmond, Virginia
Prof Kathryn Rost, Prof in Mental Health, College of Medicine, Florida State University
Dr Robert C. Smith, Prof of Medicine and Psychiatry, Michigan State University, East Lansing, Michigan
Prof Mark Sullivan, Prof of Psychiatry, Washington University, Seattle

Germany (4)
Prof Dr Peter Henningsen, Prof of Psychosomatic Medicine, University Hospital, Munich
Prof Dr Wolfgang Hiller, Psychological Institute, University of Mainz
Prof Dr Bernd Löwe, Director, Institute for Psychosomatic Medicine and Psychotherapy, Hamburg
Prof Dr Winfried Rief, Professor of Psychology and Psychotherapy, Marburg

The Netherlands (5)
Dr Ingrid Arnold, Department of Public Health and Primary Care, Leiden University Medical Center
Dr Veronique de Gucht, Department of Clinical and Health Psychology, Leiden University
Prof dr Stan Maes, Professor of Health Psychology, Leiden University
Prof Dr Philip Spinhoven, Faculty of Social Sciences, Leiden University
Dr Margot de Vaal, Department of Public Health and Primary Care, Leiden University Medical Center

Denmark (1)
Prof Per Fink, Professor of Psychiatry, Aarhus University Hospital

Norway (1)
Dr Kari Ann Leiknes, Research Fellow, Institute of Basic Medical Sciences, Oslo University

“Advisory” consultants (11) – who have offered helpful comments and suggestions.

USA (7)
Prof Caroline Doebbeling, Research Scientist, Regenstrief Institute, Indiana University School of Medicine, Indiana
Dr Michael First, Research Psychiatrist, Biometrics Research Department, New York State Psychiatric Institute, New York, NY
Prof Robert D Martin, Assistant Professor of Psychiatry, Albert Einstein College of Medicine, Long Island Jewish Medical Center Campus, New York, NY
Prof Christian Perring, Associate Professor of Philosophy, Dowling College, Long Island, NY
Dr Claire Pouncey, Cornell Hospital, New York, NY
Prof Jennifer Radden, Professor of Philosophy, Massachusetts University, Boston
Prof John Z Sadler, Professor & Director Undergraduate Medical Education, Dept of Psychiatry, UT Southwestern, Dallas, Texas

UK (2)
Prof Bill Fulford, Professor of Philosophy and Mental Health, Warwick University, Coventry
Prof Peter Campion, Professor of Primary Care, University of Hull

Switzerland (2)
Prof em Dr med Martha Koukkou, University Hospital of Clinical Psychiatry, Bern
Prof Norman Sartorius, WHO Expert Advisory Council, Geneva

Appendix C Some Consultants’ Comments

1. “Thanks for all your efforts Richard. You gave birth to CISSD, and now it’s graduated and left home, and you should be a very proud father. One very clear measure of the success of CISSD is the number of CISSD participants who have been appointed to the DSM V Somatoform Disorders Work Group
… I fully expect more of them will be enlisted as consultants or members of the work group.”

2. “Richard: You are to (be) congratulated on this extraordinary achievement. I hope you will write about your experience of preparing this advice for the DSM process, from the public sector and involving broad involvement. Please keep me appraised of progress, and certainly feel free to ask for my assistance.”

3. “Congratulations on such a successful and productive project. Let’s keep our fingers crossed that DSM-V and other efforts lead to a more rational diagnostic system.”

4. “I am convinced that the discussions within CISSD will, in the end, prove to be helpful also for the patients. I have learned a lot!”

5. “Many congratulations for putting together such a stimulating programme”

6. “A terrific effort, well done.”

Appendix D Somatoform Disorders in DSM-IV

DSM-IV introduces the category of Somatoform Disorders in the following way:*

“The common feature of the Somatoform Disorders is the presence of physical symptoms that suggest a general medical condition (hence the tern somatoform) and are not fully explained by a general medical condition, by the direct effects of a substance, or by another mental disorder. The grouping of these disorders in a single section is based on clinical utility… rather than on assumptions regarding shared aetiology or mechanism.”

The individual somatoform disorders are introduced as follows:*

“Somatization Disorder (historically referred to as hysteria or Briquet’s syndrome) is a polysymptomatic disorder that begins before age 30 years, extends over a period of years and is characterized by a combination of pain, gastrointestinal, sexual, and pseudoneurological symptoms.

Undifferentiated Somatoform Disorder is characterized by unexplained physical complaints, lasting at least 6 months, that are below the threshold for a diagnosis of Somatization Disorder.

Conversion Disorder involves unexplained symptoms or deficits affecting voluntary motor or sensory functions that suggest a neurological or other general medical condition. Psychological factors are judged to be associated with the symptoms or deficits.

Pain Disorder is characterized by pain as the predominant focus of clinical attention. In addition psychological factors are judged to have an important role in its onset, severity, exacerbation or maintenance.

Hypochondriasis is the preoccupation with the fear of having, or the idea that one has, a serious disease based on the person’s misinterpretation of bodily symptoms or bodily functions.

Body Dysmorphic Disorder is the preoccupation with an imagined or exaggerated defect in physical appearance.

Somatoform Disorder Not Otherwise Specified is included for coding disorders with somatoform symptoms that do not meet the criteria for any of the specific Somatoform Disorders.”

*From Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, Washington, DC. American Psychiatric Association, 1994.

(The characterisation of Somatoform Disorders in ICD-10 is along the same lines though there are some important differences.)

Appendix D Co-ordinator’s background for the CISSD project

Three factors in the background of the co-ordinator provided a basis for the project.

The first was previous work as director of Westcare UK, a Bristol based charity for people with CFS/ME which operated from 1988 to 2002 and then merged with Action for ME. It adopted a biopsychosocial approach to CFS/ME and provided services on this basis. The experience of our charity was that there was frequently conflict between doctors and patients about the nature of the patient’s illness.

Most patients thought that their illness had primarily an undiscovered physical cause and should be classed as a physical illness. Some doctors, though, thought that their illness was primarily a mental disorder and that its primary causes were mental – some said that it should be classed as a “somatoform disorder”. Conflict on this issue sometimes led to a breakdown in communication between doctor and patient.

The second factor was work on the production of two reports (1,2), jointly authored with Professor Peter Campion, on the interface between physical and mental factors in CFS/ME. During this work it became very clear that there were major problems associated with the category of somatoform disorder and that many of these problems were of a conceptual rather than empirical nature.

The third factor was prior training, teaching and research in linguistic philosophy. Linguistic philosophy is a branch of philosophy which combines an analytic approach with an emphasis on the need to pay very careful attention to the way in which terms and concepts are used. It demonstrates that conceptual problems and disagreements are often resolved when imprecision and ambiguity in language is uncovered and corrected (3).

1. Sykes, R.D. and Campion, P. 2002 The Physical and the Mental in Chronic Fatigue Syndrome/ME. Principles of Psychological Help. Bristol: Westcare UK*
2. Sykes, R.D. and Campion, P. 2002 Chronic Fatigue Syndrome/ME. Trusting Patients’ Perceptions of a Multi dimensional Physical Illness. Bristol: Westcare UK
3. For the relevance of linguistic philosophy to psychiatry, see, e.g., Fulford KWM Philosophy and Medicine: The Oxford Connection. Br J Psychiatry 1990; 157:111-115.

Notes

*These reports are available on the Action for ME website: www.afme.org.uk or from Action for ME, Third Floor, Canningford House, 38 Victoria Street, Bristol BS1 6BY

Appendix E Presentations by Richard Sykes at Professional Conferences

1.  28 June 2005 Leeds
Distinguishing between mental and physical disorder. Some proposals.
At the Conference “The concept of Disease” sponsored by the British Society for the Philosophy of Science, the Society for Applied Philosophy and the University of Leeds

2.  17 September 2005 Oxford
The Distinction between physical and mental disorders: Redefine or Discard?
At the Ninth Annual Conference “Reconstructing Consciousness, Mind and Being” of the Consciousness and Experiential Psychology Section of the British Psychological Society   Abstract Page 20 in PDF below: http://www.bps.org.uk/downloadfile.cfm?file_uuid=3805E010-1143-DFD0-7EC0-CCB468AB03FA&ext=pdf

3.  19 May 2006 Heidelberg, Germany
Somatoform Disorders: mental or physical disorders?
At the Congress/Symposium: “Functional/somatoform disorders. Concepts and Management.” organized by the Klinik fur Psychosomatische und Allgemeine Klinische Medizin, Heidelberg University

4.  30 September 2006 Cavtat, Croatia
Chair of Workshop on “Conceptual Issues in Somatoform and Similar Disorders”.
Presentations: Emerging proposals from the CISSD project and Somatoform Disorders: What are patients concerns and do they matter?
At the 26th European Conference of Psychosomatic Research.

5.  20 April 2007 London
Conceptual Issues in the Classification of ME/CFS
At the Annual Meeting of the Melvin Ramsay Society.

6.  June 2007 Maastricht, The Netherlands
Somatoform Disorders in the DSM V: Physical or Mental Disorders?

At the 13th Triptych Congress, “Psychosomatics in the 21st century” organized by the Department of Psychiatry, Maastricht University

Ends

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Related material:

The April 2009 report of the APA DSM-V Somatic Distress Disorders Work Group can be read on the APA’s site here: http://tinyurl.com/DSMSDDWGApril09

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 on behalf of the APA’s DSM-V Somatic Symptoms Disorders Workgroup was published in the June 09 issue of the Journal of Psychosomatic Research. Free access to both text and PDF versions at:

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

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

Latest in the “Elephant Series” of reports here:

The Elephant in the Room Series Two: More on MUPS  18 May 2009

The Elephant in the Room Series Two: DSM-V Revision Activities: New reports  13 May 2009

 

Previous reports in the Elephant in the Room series and DSM-V and ICD-11 Directory:   http://tinyurl.com/dsm-vdirectory

[1] Summary of work of CISSD Project provided by Dr Richard Sykes, October 2008
Open file:  CISSD Sykes Summary

[2] 18 Proposals submitted by Dr Richard Sykes to ICD Update and Revison Platform, March 2008
Open file:  CISSD Sykes ICD Proposals

[3] Questions raised with Dr Richard Sykes by Suzy Chapman, 26 February 2009
Open file:  CISSD Sykes Questions 1

[4] Information obtained under Freedom of Information Act
Information obtained under FOI Act

[5] Extract, transcript, RSM CFS Conference presentation: Prof Peter White discouraging Conference from using ICD.
Open file:  RSM Transcript Prof Peter White

[6] DSM-IV and ICD-10 classifications around the so-called Somatoform Disorders and Functional Somatic Syndromes; Neurasthenia; ME, PVFS, CFS
Open file:  DSM-IV ICD-10 Classifications

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