The redacted bits (Sykes’ CISSD report for the MEA)

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

The redacted bits (Richard Sykes’ CISSD report for the MEA)

This Report on the CISSD Project, dated December 2007, and the Co-ordinators’ Report are published as provided.  ME agenda accepts no responsibility for errors or omissions in unauthorised versions of these documents.  The copy below will be replaced by an authorised copy once this has been provided.

The CISSD Project and CFS/ME

Report on the CISSD Project

(Conceptual Issues in Somatoform and Similar Disorders)

for Action for ME   Richard Sykes

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

“An international and expert project supported by AfME”

December 2007

 

Open Word document here or read extracts, below:

CISSD Final Report to AfME 2007

 

Extracts from document: Report on the CISSD Project December 2007

[…]

CFS and the International Classifications

[…]

Despite claims to the contrary, the classification of CFS is still an open issue. CFS and CFS/ME* are not mentioned either in the latest edition of ICD (ICD-10), or in the latest edition of DSM (DSM-IV).**

[*Ed: WHO ICD does not use composite terms such as CFS/ME.]

[**See Footnote 1 for amendment to this statement.]

It is true that in 2004 permission was given by the WHO for the UK to adapt the WHO classification for the purposes of Primary Care in the UK and that on this basis a classification has been produced for use in the UK which lists CFS and CFS/ME as a neurological disorder. While many consider that this is a step in the right direction, this classification is a UK adaptation only and has not been formally adopted by the WHO. It has no validity in other countries. No formal decision has yet been made by the WHO and it is still an open question what the official WHO classification of CFS and CFS/ME will be in the next revision. (See also App B.)

[Ed: The text in the June ’09  “Summary report” published by the ME Association reads:

“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.”]

Redacted material

[…]

In addition to coordinating the CISSD project and taking part in the CISSD workshops, my own activities have included travel to meet the main international figures involved in these issues and the organization of a separate workshop on CISSD topics as part of an international conference in Croatia. In addition I gave two presentations at that workshop and further presentations at two other international conferences (in Germany and The Netherlands) and at professional conferences in London*, Oxford and Leeds (See App C). I have also produced the co-ordinator’s report on the project.

[Ed: Melvin Ramsay Society Annual Meeting, April 2007, attended by Dr Charles Shepherd, ME Association, who also gave a presentation.  The presentation given by Dr Richard Sykes: “Conceptual Issues in the Classification of ME/CFS” and the Meeting Agenda were advertised by the ME Association on their website.]

[…]

While it is not a foregone conclusion that in the next international revisions CFS will be classified as a “general medical condition” or physical disorder and not as a mental disorder, the CISSD project will increased the likelihood that CFS and CFS/ME* will be so classified.

[*Ed: WHO ICD does not use composite terms such as CFS/ME.]

[…]

[Ed: Notes 1-3 do appear in the June ’09  “Summary report” published by the ME Association but are included here, for context.]

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 the subcategory of Neurasthenia and it is possible that this subcategory will be omitted in the next revision of ICD-10.

[*Ed: WHO ICD does not use composite terms such as CFS/ME.]

Appendices

Appendix A Somatoform Disorders in DSM-IV

[Ed. Appendix A appears as Appendix D in the June ’09  “Summary report” published by the ME Association and is being repeated, here, for context)]

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.)

[Ed: The following text, originally “Appendix B”, in the December 2007 document was omitted from the “Summary report” published by the ME Association on 3 June.]

Appendix B How does the WHO currently classify CFS/ME*?

[*Ed: WHO ICD does not use composite terms such as CFS/ME.]

“CFS/ME” (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis or Myalgic Encephalopathy) is the composite name used by the UK Department of Health and other organizations to refer to a condition that has been named and defined in a variety of ways. Generally speaking, “CFS” tends to be preferred by health professionals, “ME” by patients.

Background

The main WHO (World Health Organization) classification of diseases and disorders is the International Statistical Classification of Diseases and related Health Problems (ICD). This classification is a classification of all disorders and related health problems and contains one chapter, chapter V, which is concerned solely with “mental and behavioural disorders”. The classification is revised periodically: the latest revision is the tenth revision (ICD-10) which was published in 3 volumes; Vol P A Tabular List in 1992, Vol 2: Instruction Manual in 1993 and Vol 3: Index in 1994.

Also produced from 1992 onwards was a separate series of volumes that dealt solely with mental and behavioural disorders, the subject of chapter V of ICD. Although the glossary provided by chapter V of ICD was considered adequate for use by coders or clerical workers, it was not recommended for use by health professionals. The first and central volume of the additional series was The ICD-10 Classification of Mental and Behavioural Disorders. Clinical descriptions and diagnostic guidelines (CDDG), produced in 1992, which was intended for general clinical, educational and service use. (Other volumes in this series included The ICD-10 Classification of Mental and Behavioural Disorders. Diagnostic Criteria for Research (DCR), and Diagnostic and Management Guidelines for Mental Disorders in Primary Care; ICD-10 Chapter V Primary Care Version.)

Is CFS/ME classified as a neurological or as a mental disorder in ICD-10?

CFS and CFS/ME are not listed in ICD-10* and of the 4 related conditions that are listed (post-viral fatigue syndrome, benign myalgic encephalomyelitis, neurasthenia, fatigue syndrome), 2 are listed as neurological disorders and 2 as mental disorders. On the one hand “post-viral fatigue syndrome” is classified as a neurological disorder with the code number G33.3 [sic]. In CDDG this is said to include “benign myalgic encephalomyelitis”. Although the adjective “benign” has long since been dropped and although most users of the term ME now say that ME should stand for Myalgic Encephalopathy, rather than Myalgic Encephalomyelitis (since there is no evidence of encephalomyelitis)**, this would appear to be a good reason for saying that ME is implicitly classified as a neurological disorder. (Since G33.4 [sic] is the code for encephalopathy, it would seem that this code rather than G33.3 [sic] is now the more appropriate code for ME.***)

[Ed: *This statement has been corrected in the “Summary report” published by the ME Association. **Dr Sykes provides no supportive evidence for this statement. ***Dr Sykes provides no medical evidence to support the classification of “Myalgic Encephalopathy” at the same coding as “Encephalopathy” (currently coded in ICD-10 at G93.4, not at G33.4 as the document states).]

On the other hand “neurasthenia” is classified as a neurotic disorder with the code number F48.0 and CDDG states that this includes “fatigue syndrome”. So it could be argued that CFS should be classified as a neurotic, and hence, a mental disorder. A case could also be made for coding some cases of CFS as F45 Somatoform Disorders, either as F45.1, the code for Undifferentiated Somatoform Disorder or as F45:3, the code for Somatoform Autonomic Dysfunction, or as F45.9, the code for Somatoform Disorder, Unspecified. All these are codes for mental disorders.

This presents a problem for CFS/ME. If ME is stressed, then it could be argued that CFS/ME should be classified as a physical disorder, since benign myalgic encephalomyelitis is classified as a neurological disorder. On the other hand, if Chronic Fatigue Syndrome is stressed then it could be argued that CFS/ME should be classified as a mental disorder, since fatigue syndrome is classified as a neurotic disorder.

Developments since 1992

In 2004 the WHO Guide to Mental and Neurological Health in Primary Care, Second Edition, was published by the Royal Society of Medicine Press. This was described on the cover and in the frontispiece as “Adapted for the UK, with permission, from Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version“.

In this volume the main term used is Chronic Fatigue Syndrome (CFS), which is said to be also referred to as ME (Myalgic Encephalomyelitis or Myalgic Encephalopathy) or as CFS/ME, and this is coded as G93.3. G.93.3 is the code for post-viral fatigue syndrome, a neurological disorder.

So does this settle the matter? Is CFS/ME* now officially classified by the WHO as a neurological, not as a mental disorder?

[*Ed: WHO ICD does not use composite terms such as CFS/ME.]

Unfortunately the matter is not quite so simple, for a number of reasons. In the first place the 2004 publication is described as “adapted for the UK, with permission”. This means that it is not applicable in countries outside the UK, in Germany or France etc.. It does not have international applicability. Secondly, even in the UK it applies only to Primary Care (GP level). It does not claim to be applicable to Secondary Care (hospital level).

Thirdly, even in the UK it does not claim to be an official WHO classification. It is an initiative of the UK WHO Collaborating Centre, one of many of the Collaborating Centres worldwide, and is backed by the English Department of Health and a number of other organizations and individuals. It is not an authoritative WHO classification but is intended simply to provide helpful recommendations which UK GPs may use or not use as they wish. In the UK a GP may use any of a number of competing classifications. These include the International Classification of Health Problems in Primary Care (ICHPPP), the Read Codes, and a triaxial classification. They can also choose not to use a classification system at all.

Summary

“CFS” and “CFS/ME” are not listed in ICD-10 and this leaves room for debate as to how they should be listed. The UK WHO Collaborating Centre, with the support of the Department of Health and other organizations, proposed in 2004 that they should be coded as G33.3 [sic], the code for a neurological disorder. These proposals are undoubtedly encouraging for the ME patients’ organizations, who will hope that this initiative will be confirmed in the next revision of ICD-10, but they are not yet official recommendations by the WHO. There remains confusion and debate about how CFS/ME fits in to the official WHO classification.

A note on DSM-IV.

DSM-IV is the Diagnostic and Statistical Manual of Mental Disorders, Fourth Edition, produced by the American Psychiatric Association. It has been extensively researched and is in widespread use worldwide.

In DSM-IV there is equally no mention of CFS, but neurasthenia is mentioned and is subsumed under Undifferentiated Somatoform Disorder, one of the Somatoform Disorders. There is an extensive overlap between the symptoms of neurasthenia and of CFS and consequently some argue that this is where CFS should be placed. Against this it could be argued that CFS or ME or CFS/ME should be classified as G93.3 in ICD and hence should not have a place in a manual of mental disorders at all.

So for DSM-IV, too, there is the same uncertainty as to how CFS/ME should be classified.

[…]

Footnote [1]  This statement was amended in the “Summary report” published by the ME Association on 3 June to read:

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.

 

Co-ordinators’ Final Report

THE CISSD PROJECT 2003-2007

(Conceptual Issues in Somatoform and Similar Disorders)

FINAL REPORT OF CO-ORDINATOR (Richard Sykes PhD, CQSW)

Open document here in Word format: CISSD PROJECT Coordinators Final Report

—————————-

For further information around ICD codings and for comparison of current DSM and ICD-10 (Chapter V)  “Somatoform Disorder” codings and classifications see document: DSM-IV ICD-10 Classifications

For comparison of current DSM and ICD-10 (Chapter V) “Somatoform Disorder” codings in greater detail see document: DSM and ICD Somatoform Comparison

For copy of the ME Association version of Dr Sykes’ CISSD Report see previous posting: https://meagenda.wordpress.com/2009/06/03/cissd-project-report-from-dr-richard-sykes/

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

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.

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