THE CISSD PROJECT 2003-2007
(Conceptual Issues in Somatoform and Similar Disorders) FINAL REPORT OF CO-ORDINATOR (Richard Sykes PhD, CQSW)
Somatoform Disorders are one of the categories of "Mental and Behavioural Disorders" listed in the tenth edition of the International Classification of Diseases (ICD-10) produced by the World Health Organisation (WHO). They are also one of the categories of "Mental Disorders" listed in the fourth edition of the Diagnostic and Statistical Manual (DSM-IV) produced by the American Psychiatric Association (APA). (For a brief account of Somatoform Disorders in DSM-IV see Appendix 1).
The CISSD (Conceptual Issues in Somatoform and Similar Disorders) project was developed in order to make a background contribution to the complex task of revising the sections on Somatoform Disorders in these two influential and internationally used classifications.
1. Impetus for project
The impetus for the CISSD project came from 4 main sources.
The first was the frequent difficulties in communication between doctors and patients about the nature of Chronic Fatigue Syndrome (CFS). These included disagreement as to whether or not CFS should properly be considered a "mental" disorder, falling within the category of "somatoform" disorders.
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 4)
The fourth was the impending revision of the international classifications, due from 2012 onwards.
From this background it seemed reasonable to expect that there would be major benefits if clarity could be achieved 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 but could lead to improved communication between doctors and patients in relation to CFS and similar disorders. 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.
2. 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.
Membership of the project was open to anyone with a professional interest in the subject. 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 3 for a list of the "active" and "advisory" consultants.)
Organising Group Chair:
Co-Chair (UK): Principal Collaborator:
Project Advisor: Co-ordinator:
Prof. Kurt Kroenke
Professor of Medicine, Regenstrief Institute, Indianapolis, USA Prof. Michael Sharpe
Professor of Psychological Medicine, Edinburgh University. Prof. Rachel Jenkins
Professor of Psychiatry, WHO Collaborating Centre, Institute of Psychiatry, London University. Prof. John Bradfield
Emeritus Professor of Histopathology, Bristol University. Dr. Richard Sykes
Hon Visiting Research Associate, WHO Collaborating Centre, Institute of Psychiatry, London University.
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.
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.
The many "additional" consultants all expressed an interest in the project and a willingness to be consulted. Their interest was encouraging and most welcome.
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.
From the London 2005 workshop, 8 articles were published in the April 2006 issue of the Journal of Psychosomatic Research. A final article, summarising the project discussions and recommendations, has been published in the July/August 2007 issue of Psychosomatics. (These are listed in Appendix 3).
6. 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.
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,
Al 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,
Bl 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.
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.
1. An important question is to what extent the views of patients and of non-psychiatric clinicians should be considered.
These recommendations and the July/August 2007 Psychosomatics article (referred to above) will be 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.
7. Support and Affiliation
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.
As co-ordinator, I held appointments as Hon Visiting Research Associate at the WHO Collaborating Centre, Institute of Psychiatry, University of London and as Consultant to Action for ME.
8. Acknowledgements and Appreciation
I would like to express my most appreciative thanks to all those who gave support to the project: to the funding bodies and affiliated organisations 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 cooperative 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, CISSD Project Co-ordinator 26.10.07
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.
Appendices Appendix 1 Somatoform Disorders in DSM-IV
DSM-IV introduces the category of Somatoform Disorders in the
"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
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 2 Published articles resulting from the CISSD project
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-Vfacilitate 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.
Kroenke K, Sharpe M, Sykes R Revising the classification of Somatoform Disorders. Key Questions and Preliminary Recommendations: Psychosomatics 2007; 48:277-285.
Appendix 3 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.
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
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,
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,
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 Bemd Lowe, 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
Prof Bill Fulford, Professor of Philosophy and Mental Health, Warwick University, Coventry Prof Peter Campion, Professor of Primary Care, University of Hull
Prof em Dr med Martha Koukkou, University Hospital of Clinical Psychiatry, Bern Prof Norman Sartorius, WHO Expert Advisory Council, Geneva
Appendix 4 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.
*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