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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
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The Elephant in the Room Series Three: Latest proposals from DSM-V Somatic Symptom Disorders Work Group
Update:
For commentary on this broadcast on the Co-Cure mailing list see:
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0909b&L=co-cure&T=0&F=&S=&P=3193
ACT: Update on MUS article 12 Sep 2009, Susanna Agardy
http://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind0908a&L=co-cure&T=0&F=&S=&P=2204
ACT: Medically Unexplained Symptoms = Failure to Diagnose 04 August 2009, Susanna Agardy
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BBC Radio 4
On Wednesday, 1 July, BBC Radio 4 broadcast a programme presented by Laurie Taylor in the “Thinking Allowed” series which included a strand on “Exploring medically unexplained symptoms”.
This broadcast (which raised the BP of many listeners) can be heard again at:
http://www.bbc.co.uk/programmes/b00lbn9y#synopsis
“From dizziness to chronic pain, the overstretched health service is faced with increasing numbers of patients with symptoms that defy a medical explanation. They are often subject to repeated tests and treatment yet their illness persists. Laurie Taylor is joined by Monica Greco, whose research suggests the practice of patient choice ensures that many such patients get worse rather than better.”
Dr Monica Greco, Senior Lecturer in the Department of Sociology at Goldsmiths, University of London, is author of a paper: “Medically unexplained symptoms: The failure of categories and the paradox of care” .
Also contributing to the broadcast was Dr Simon Cohn, Medical Anthropologist and Senior University Lecturer at Cambridge University, who has published on GWS with Professor Simon Wessely.
The broadcast can also be listened to here, on BBC iPlayer:
http://www.bbc.co.uk/iplayer/episode/b00lbn9y/Thinking_Allowed_01_07_2009/
Thinking Allowed – Wed, 01 Jul 2009
Broadcast on: BBC Radio 4, 4:00pm Wednesday 1st July 2009
Duration: 30 minutes
Available until: 12:00am Thursday 1st January 2099
The Feedback slot for this broadcast included extracts from a number of concerned responses received from members of the ME community in the wake of last Wednesday’s programme.
For more on Monica Greco see:
http://www.crassh.cam.ac.uk/page/361/greco.htm
Monica Greco (Goldsmiths, University of London)
Medically unexplained symptoms: the failure of categories and the paradox of care
The case of medically unexplained symptoms (or MUS) is one that draws our attention to situations where care, more often than not, is perceived to fail. The role of inadequate diagnostic categories in producing such failures of care is frequently acknowledged in the literature, particularly now that a fifth edition of Diagnostic and Statistical Manual of Mental Disorders (DSM) is in preparation, offering the opportunity to revise existing nomenclature. This paper offers a reading of this debate to argue that the failure associated with MUS points to the limits and paradoxes inherent not in specific diagnostic categories, but in the practice of diagnostic categorising more generally.
Monica Greco is a Senior Lecturer in the Department of Sociology at Goldsmiths, University of London, and a Research Fellow of the Alexander Von Humboldt Stiftung. She is the author of Illness as a Work of Thought (Routledge, 1998), co-editor (with Mariam Fraser) of The Body: A Reader (Routledge, 2005) and co-editor (with Paul Stenner) of The Emotions: A Social Science Reader (Routledge, 2008).
See also:
Centre for Research in the Arts, Social Sciences and Humanities
Promoting interdisciplinary research and innovation in the Arts, Social Sciences and Humanities
Borders, Boundaries and Thresholds of the Body
Friday, 12 June to Saturday, 13 June
Event programme
http://www.crassh.cam.ac.uk/events/612/programme/
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In April 09, the DSM-V Somatic Distress Disorders Work Group (also known as the Somatic Symptom Disorders Work Group) published a brief progress report which can be read on the APA’s website here:
http://tinyurl.com/DSMSDDWGApril09
The Somatic Symptom Disorders Work Group reported that they are exploring the potential for eliminating criteria such as “medically unexplained symptoms” because the term was considered “unreliable”, “divisive between doctor and patient” and “lead to mind-body dualism”.
This was followed, in June, by an Editorial by DSM-V Task Force member and Work Group Chair, Joel Dimsdale, and fellow Work Group member, Francis Creed, published on behalf of the Somatic Symptom Disorders Work Group and which expands on the themes in the APA’s update.
The Editorial:
The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report was published in the June 2009 issue of the Journal of Psychosomatic Research, for which Francis Creed is a co-editor.
Free access to full text and PDF versions here: http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext
Under the section “Psychological factor affecting a general medical condition” the Dimsdale/Creed Editorial reports that some authors have recommended wider use of this existing DSM-IV category as “a diagnosis that encompasses the interface between psychiatric and general medical disorders” and it references the 2005 paper by Mayou R, Kirmayer LJ, Simon G, Kroenke K, Sharpe M: Somatoform disorders: time for a new approach in DSM-V. Am J Psychiat. 2005;162:847–855.
Free access to full paper at: http://ajp.psychiatryonline.org/cgi/content/full/162/5/847
The Editorial reports that the [Psychological factors affecting a general medical condition] diagnosis “has been underused because of the dichotomy, inherent in the “Somatoform” section of DSM-IV, between disorders based on medically unexplained symptoms and patients with organic disease”, and that by doing away with the “controversial concept of medically unexplained”, the proposed classification might diminish the problem.
The conceptual framework the Somatic Symptom Disorders Work Group currently proposes “will allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome”.
It goes on to list a variety of different subtypes included within the diagnosis of “Psychological factors affecting a general medical condition” including a specific psychiatric disorder which affects a general medical condition; psychological distress in the wake of a general medical condition and personality traits or poor coping that contribute to worsening of a medical condition. It suggests that these might be considered in the rubric “adjustment disorders” but that the location of this type of adjustment disorder had yet to be settled within the draft of DSM-V and that the text and placement for these different variants of the interface between psychiatric and general medical disorders was still under review.
The current use of the diagnosis “Psychological Factors Affecting Medical Condition” in DSM-IV is set out here: http://www.behavenet.com/capsules/disorders/psyfactorsmedcon.htm
The proposal that the concept of “medically unexplained symptoms” might usefully be eliminated is interesting as Francis Creed is currently working with EACLPP colleagues, Henningsen and Fink* on a draft white paper for the EACLPP MUS Study Group called: “Patients with medically unexplained symptoms and somatisation – a challenge for European health care systems”
A copy of the MUS Study Group working draft, which is still out for consultation, can be downloaded here: http://www.eaclpp.org/documents/Patientswithmedicallyunexplainedsymptomsandsomatisation.doc
See section [5] of previous ME agenda posting for contact details for submission of comments to the EACLPP:
http://meagenda.wordpress.com/2009/05/18/the-elephant-in-the-room-series-two-more-on-mups/
Extract from draft White Paper: “Patients with medically unexplained symptoms and somatisation – a challenge for European health care systems”
Classifications
There is no simple way to classify MUS in medicine and many doctors, especially in primary care, are rather reluctant to code them at all. These facts seriously hamper recognition, research and treatment of MUS and somatisation and communication with patients and among health professionals about them.
Classification depends on two related differentiations: classification on the level of either symptoms, syndromes or disorders and classification either as physical, mental or unspecified.
Classification as a single symptom is done for instance with the ICD-9 code 780-789 “Signs, symptom and ill-defined conditions” or its equivalent in ICD-10, chapter XVIII (R00-R99). This classification is easy to use and respects the fact that, at least early in its course, it is hard to tell whether a symptom can be organically explained, or has a physical or mental nature. But it is therefore very unspecific, and it is not adequate for multiple symptoms and severe accompanying distress.
Classification as a specific functional somatic syndrome (FSS) is possible for those patients who have a constellation of (usually more than one) medically unexplained symptoms that fit with the description of this FSS. Examples are Irritable bowel syndrome(IBS), fibromyalgia (now called chronic widespread pain), chronic fatigue syndrome (CFS), temporomandibular joint pain. A large proportion of patients with one FSS also meet the criteria for one or more other FSS (see: Comorbidity); fatigue, for example, is a recognised feature of both chronic fatigue syndrome and fibromyalgia. This classification is used widely in somatic special care, where a major proportion of new patients are found to have a functional somatic syndrome – irritable bowel syndrome in gastroenterology, chronic widespread pain in rheumatology etc. One major advantage of terms like “FSS”, “IBS”, or “CFS” is that they are less stigmatising than the terms “somatisation” and “somatoform disorders”. It is important to note, however, that gradation of severity and a description of psychological and behavioural characteristics are not part of the description of Functional somatic syndromes.
Classification as a somatoform disorder (SFD) within the ICD-10 chapter V (F) on mental disorders and the DSM-IV. In contrast to classification as FSS, subgroups of somatoform disorders allow some gradation according to number of symptoms/severity and delineation of the subgroup with predominant health anxiety. The SFD classifications mention psychological and behavioural characteristics like preoccupation with organic disease or dysfunctional illness behaviour, but they are not operationalized for single disorder categories. This classification is more difficult to use because it requires judgements about the fact that symptoms are medically unexplained and not part of another mental disorder like depression or anxiety. The term encourages a “lumping” perspective compared to the “splitting” tendency of FSS. It is, however, disliked by many patients, in some countries more than in others, because of its implication that the MUS are part of a mental disorder. New editions of the SFD classifications in ICD-11 and DSM-V are currently under way…
Note that Fibromyalgia is referred to in this draft MUS White Paper as “now called chronic widespread pain”.
Fibromyalgia is currently classified in ICD-10 under:
M79 Other soft tissue disorders, not elsewhere classified
M79.0 Rheumatism, unspecified
Fibromyalgia
Fibrositis
*Creed, Henningsen and Fink were members of the CISSD Project.
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According to the Journal of Psychosomatic Research, DSM-V Task Force member, Javier Escobar, also functions as a collaborator for the Somatic Symptom Disorders Work Group.
Dr Escobar’s DSM-V Task Force member bio and COI disclosure lists the following interests:
http://www.psych.org/MainMenu/Research/DSMIV/DSMV/MeettheTaskForce/JavierEscobarMDMSc.aspx
Principal Investigator and Director of the “MUPS Research Center in Primary Care”.
Associate Dean for Global Health and Professor of Psychiatry and Family Medicine at the University of Medicine and Dentistry of New Jersey–Robert Wood Johnson Medical School.
Member of the National Advisory Committee for the Robert Wood Johnson Foundation’s Physicians Faculty Scholars Program.
Former senior advisor to the Director of the National Institute of Mental Health (NIMH) in 2004.
Former member of NIMH’s National Advisory Mental Health Council.
Former advisor to the World Health Organization, Geneva.
Member of the Food and Drug Administration’s Advisory Committee on Psychiatric Drugs.
Standing member of several research review committees for the National Institutes of Health (NIMH, NIDA, and NIA) and the Veterans Administration, and other national task forces.
“Dr. Escobar has been an active researcher in the areas of clinical psychopharmacology, psychiatric epidemiology, psychiatric diagnosis, and cross-cultural medicine and Psychiatry. Currently Dr. Escobar is the principal investigator of two projects funded by the National Institute of Mental Health and also collaborates as mentor, co-investigator or consultant in several other NIH-funded projects in the areas of mental disorders in primary care, treatment of somatoform disorders, cross-cultural psychiatry, psychiatric epidemiology and development and mentoring of new psychiatric researchers. He has published more than 200 scientific articles in national and international books and journals.”
Dr. Escobar’s APA DSM-V disclosure statement declares income from or interests in Eli Lilly, Pfizer, BMS, Forest, Wyeth, Johnson & Johnson, Bristol-Meyers Squibb, and American Association of General Psychiatry.
In 2008, a Special Report by Humberto Marin, Javier I. Escobar, MD: Unexplained Physical Symptoms What’s a Psychiatrist to Do? was published in Psychiatric Times. Vol. 25 No. 9, August 1, 2008
(Free access to full paper here: http://www.psychiatrictimes.com/display/article/10168/1171223 )
Escobar and his co-author define “Functional Somatic Syndromes” (FSS) to include:
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 and Total allergy syndrome.
and that:
“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.”
In this Special Report, the authors recommend “Rather than reassuring patients, unwarranted consultations or tests may feed their belief that they have a serious physical illness.”
That “fatigue” should be addressed with “an aerobic exercise program (eg, walking, jogging, biking, swimming) at least 4 days a week but ideally, every day…” and that clinicians should “Discourage secondary gains such as missing work or class or avoiding home chores”.
Javier Escobar was a member of the workgroup for the “Conceptual Issues in Somatoform and Similar Disorders (CISSD) Project”, co-ordinated by Dr Richard Sykes, PhD, between 2003 and 2007, and administered by UK patient organisation, Action for M.E. Recommendations and proposals resulting out of the CISSD Project have informed the APA’s development of DSM-V and fed into the revision process of ICD-10: Chapter V. The chapter on Mental and behavioural disorders in ICD-11 is to be “harmonized” for uniformity with DSM-V.
Four other members of the CISSD Project’s 24 member international Work Group (Arthur J. Barsky, Francis Creed, James L. Levenson, Michael Sharpe) have been members of the APA’s DSM-V Work Group on Somatic Symptom Disorders since 2007.
Dr Richard Sykes is now engaged in a new project - the “London Medically Unexplained Physical Symptoms and Syndromes (MUPSS) Project” in association with the Institute of Psychiatry, King’s College London, through which funding is provided by the Hugh and Ruby Sykes Charitable Trust. The nature, aims and objectives of this project have yet to be established.
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Related links:
Psychiatric Times maintains a page of resources for the current edition of DSM, DSM-IV, with updates, articles and commentary around the development of DSM-V.
American Psychiatric Association (APA) DSM-V revision web pages:
DSM-V: The Future Manual:
http://www.psych.org/MainMenu/Research/DSMIV/DSMV.aspx
DSM Revision Activities:
http://www.psych.org/MainMenu/Research/DSMIV/DSMV/DSMRevisionActivities.aspx
DSM-V Somatic Distress Disorders (Somatic Symptom Disorders) Work Group member bios and COI disclosures:
http://www.psych.org/MainMenu/Research/DSMIV/DSMV/WorkGroups/SomaticDistress.aspx
Make a Suggestion:
http://www.psych.org/MainMenu/Research/DSMIV/DSMV/MakeaSuggestion.aspx
WHO ICD revision:
ICD Revision Steering Group which includes chairs of the Topic Advisory Groups (TAGs):
http://www.who.int/classifications/icd/RSG/en/index.html
ICD Update and Revision Platform Entry Page:
https://extranet.who.int/icdrevision/nr/login.aspx?ReturnUrl=%2ficdrevision%2fdefault.aspx
