The Elephant in the Room Series Two: Update on CISSD Project, FOI responses, Sykes/WHO Collaborating Centre “MUPSS Project”

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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 Two:

Update on the CISSD Project; FOI responses: Institute of Psychiatry, University of Edinburgh; news of a new Sykes/WHO Collaborating Centre “Medically Unexplained Physical Symptoms and Syndromes (MUPSS) Project”

http://tinyurl.com/CISSDProjectMUPSSProject

12 April 2009

This report provides an update on recent information gathered around the international CISSD (Conceptual Issues in Somatoform and Similar Disorders) Project. It also provides news of another project currently being undertaken by Dr Richard Sykes PhD, former Director of Westcare UK, in association with the WHO Collaborating Centre for Research and Training in Mental Health and Section of Mental Health Policy, Institute of Psychiatry, Kings College London. 

WHO Collaborating Centre website:  http://www.iop.kcl.ac.uk/departments/?locator=430

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1] Action for M.E. and the CISSD Project

On 12 February, I asked Action for M.E. whether the organisation intended to publish a report or summary on the CISSD Project. Action for M.E. had functioned as Principal Administrators for the Project and a final report had been provided to them and to the WHO Collaborating Centre. Although Action for M.E. has provided some limited information to me and clarified specific queries relating to the funding of the Project, I have received no confirmation of whether the organisation is planning to publish any report.

To date, Action for M.E. has published nothing on the CISSD Project nor on the DSM revision process, the ICD-10 revision process or the DSM-ICD “Harmonization” process other than two brief and opaque statements in its Annual Reports and Accounts.

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2] Questions raised with Dr Richard Sykes PhD, CISSD Project Co-ordinator

On 28 February, I was informed by Dr Sykes that he had suggested to Action for M.E. that an article is published in InterAction magazine about the CISSD Project; that he felt an article could serve to clear up many of the queries I and others might have and that he would let me know when Action for M.E. had made a decision about this suggestion.

I have heard nothing further from Dr Sykes regarding any plans Action for M.E. might have for the publication of an article or report.

I advised Dr Sykes that if Action for M.E. were to agree to his suggestion, many within the ME community would consider that an article about the CISSD Project was long overdue, and I would welcome this myself. However, I questioned whether a general article written up by Action for M.E. or a new or existing report provided by Dr Sykes would necessarily answer the type of queries I had raised with him and that in any case, the next issue of InterAction magazine was not due for publication for several months.

Recommendations resulting out of the CISSD Project, if accepted by the WHO, have been presented by Action for M.E. as being of direct benefit to people with ME. The ME community is a stakeholder in the Project and patient communities are also stakeholders in the DSM and ICD revision processes into which the Project has fed. There is an expectation that as Project Co-ordinator, Dr Sykes should be prepared to be transparent and that he will provide answers to the questions I have raised with him concerning ambiguities around his use of terminology and in connection with the administration and business of the Project.

I have heard nothing further from Dr Sykes regarding his intentions.

Questions raised with Dr Sykes can be read here:  CISSD Sykes Questions 1

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3] The ME Association and the CISSD Project

To date, the ME Association has also published nothing on the CISSD Project, nor on the DSM revision process, the ICD-10 revision process or the DSM-ICD “Harmonization” process.

It is my understanding that the ME Association has been negotiating with Dr Sykes for a report on the Project. This is confirmed by the Freedom of Information response from the Institute of Psychiatry, which was fulfilled on 9 April:

“A final report was provided to the WHO Collaborating Centre. Dr Sykes has arranged for the final report and other detailed information to be made available in the near future on the ME Association website (http://www.meassociation.org.uk/ ) and in the ME Association journal, “Essential ME” [sic]. We therefore consider this information exempt under section 21 of the act (information accessible by other means).”

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4] DSM-V and ICD-11 Directory

In order to assist the ME community and other interested parties in navigating these complex DSM and ICD “harmonization” and revision processes, I have compiled a DSM-V and ICD-11 “Directory”. This 20 page document collates links for key documents and notes around the APA DSM-V and WHO ICD-11 revision processes and also around the CISSD (Conceptual Issues in Somatoform and Similar Disorders) Project.

The DSM-V and ICD-11 Directory can be downloaded in Word format here:  DSM-V and ICD-11 Directory

or from this pagehttp://tinyurl.com/dsm-vdirectory

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5] Request for information from University of Edinburgh under the Freedom of Information Act

This response was fulfilled on 18 March 2009. It confirms information already available in the document: “The Wellcome Trust Grants Awarded 2004/05” that a grant of £4,950 was obtained for the CISSD Project by Dr Sykes/Prof Michael Sharpe, from The Wellcome Trust, administered by University of Edinburgh. The purpose of the award was for the convening of the first Workshop conference of the CISSD Project Work Group, held on 20 May 2005, in London.

It has not yet been established whether funding was obtained for the convening of the second Workshop conference held in March 2006, in Oxford, or the source of any award(s) obtained for this purpose.

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6] Request for information from Institute of Psychiatry under Freedom of Information Act

This response to a request for information around the CISSD Project and the nature and status of the relationships between the Project, Dr Sykes and the WHO Collaborating Centre was fulfilled on 9 April 2009.

The Institute of Psychiatry’s response can be read or downloaded in PDF format here:

PDF  IoP Response 09.04.09

In a follow-up posting, I shall be publishing the FOI responses as text, interspersed with brief notes.

There are one or two responses that are going to require additional clarification by the Institute of Psychiatry’s Legal Compliance Office.

This request for information under the FOI Act around the CISSD Project has disclosed the following:

That Dr Sykes’ “Honorary Membership” of the WHO Collaborating Centre ceased in 2007.
That Dr Sykes is now attached to the WHO Collaborating Centre as a “Visiting Research Associate”.
That since 2008, Dr Sykes has been engaged on the “London Medically Unexplained Physical Symptoms and Syndromes Project (MUPSS)”.
That Dr Sykes receives a research award from the Institute of Psychiatry for the “London MUPSS Project”.
That the award commenced in 2008 and is for £27,000 per year.
That the award is intended to cover all research and associated expenses (e.g. travel, attendance at conferences etc).
That the award is funded by a grant from the Hugh and Ruby Sykes Charitable Trust.*

*Sir Hugh Sykes is the brother of Dr Richard Sykes. Sir Hugh had been the original settlor and trustee of the organisation formerly operating as “Westcare UK” of which Dr Sykes had been Director. The Hugh and Ruby Sykes Charitable Trust had made regular grants to Westcare UK during the life of the operation prior to Westcare UK’s merger with Action for M.E., in mid 2002.

No other information was included in the FOI response in relation to this “Medically Unexplained Physical Symptoms and Syndromes Project”.

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According to Dr Sykes, “Somatoform Disorders are a category of Mental Disorders, used mainly by psychiatrists, that are characterized by medically unexplained physical symptoms.”

It now needs to be established what is the nature and purpose of this “Medically Unexplained Physical Symptoms and Syndromes (MUPSS) Project” and how it differs from the “Conceptual Issues in Somatoform and Similar Disorders (CISSD) Project”.

What are the aims and objectives of the MUPSS Project and through what means are these to be achieved?
Who are the MUPSS Project’s perceived stakeholders?
What is the duration of the MUPSS Project?
Who has or will have involvement in the MUPSS Project other than Dr Richard Sykes and in what capacities?
What involvement does the WHO Collaboration Centre have in the MUPSS Project ?
Is it anticipated that a review paper, research paper or report will result out of the MUPSS Project?
Is it intended that the work of the MUPSS Project will inform the DSM and ICD revision processes and the “Harmonization” between DSM-V and ICD-11 and through what means is this to be achieved?

And what are its implications for us?

We need to be able to set this new Sykes/WHO Collaborating Centre “Medically Unexplained Physical Symptoms and Syndromes Project” into context but at the moment there is no information available to us.

Current DSM-IV codings for “Somatoform Disorders” and their ICD-10 Chapter V equivalents can be compared here:  DSM-IV ICD-10 Classifications

Recommendations and proposals submitted by Dr Sykes to the ICD Update and Revision Platform in the name of the CISSD Project can be read here:  CISSD Sykes ICD Proposals

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7] The WHO Collaboration Centre and ICD classification issues

The WHO Collaborating Centre has a propensity for “creative interpretation” of ICD-10 classifications, which in the past has required the intervention of the WHO, Geneva. A good example of this is the blurring of “Chronic fatigue” with Chronic fatigue syndrome, CFS, ME and “CFS/ME” in WHO Collaborating Centre associated publications and websites.

In March, this year, Connie Nelson was obliged to contact Professor Rachel Jenkins, Director of the WHO Collaborating Centre, about misinformation contained in the second edition of the “WHO Guide to Mental and Neurological Health in Primary Care” around the accuracy of ICD-10 classifications.

Website for this WHO Guide:  http://www.mentalneurologicalprimarycare.org/index.asp

See previous ME agenda posting:

https://meagenda.wordpress.com/2009/04/01/the-elephant-in-the-room-series-two-who-guide-to-mental-and-neurological-health-in-primary-care/

The Elephant in the Room Series Two: WHO Guide to Mental and Neurological Health in Primary Care, 31 March 2009, for the full report from Connie Nelson.

The classification of “Chronic fatigue” (currently indexed in ICD-10 in Chapter V: Mental and behavioural disorders at F48.0) had been blurred by the Guide editors with the classification of “Chronic fatigue syndrome” at G93.3.

See entry under: Child & adolescent disorders

http://www.mentalneurologicalprimarycare.org/content_show.asp?c=16&fid=1252&fc=011065

“Unexplained medical symptoms (including chronic fatigue)”

Before Connie Nelson’s representations, the web page article and the RTF and PDF format article downloads said:

“Unexplained medical symptoms – F45.0 including chronic fatigue – G93.3”

An additional anomaly, also brought to the attention of Professor Jenkins by Connie Nelson, has since been amended but the web page now reads:

“Unexplained medical symptoms – F45.0 including chronic fatigue – G48.0”

This should, of course, have been corrected to read F48.0 (Chapter V: Mental and behavioural) not G48.0.

So this error has still not been properly addressed.

The RTF and PDF article downloads also stand uncorrected and the article download files still read:

“Unexplained medical symptoms – F45.0 including chronic fatigue – G93.3”

Download page:  http://www.mentalneurologicalprimarycare.org/downloads.asp

Article download in PDF format: http://www.mentalneurologicalprimarycare.org/downloads/primary_care/Unexplained_medical_symptoms.pdf

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So the WHO Collaborating Centre is still publishing misinformation on this website. This is the body that Dr Richard Sykes is associating with so closely on “classificatory issues” around the so-called “somatoform disorders”, “functional somatic syndromes” and “medically unexplained physical symptoms and syndromes” and around “chronic fatigue syndrome” and what he terms “CFS”, “CFS/ME” and “ME/CFS”.

Does it not send a shiver down the spine?

For the record, this is the current article on the WHO Guide to Mental and Neurological Health in Primary Care website for “Chronic fatigue syndrome (CFS or CFS/ME)”:

http://www.mentalneurologicalprimarycare.org/content_show.asp?c=16&fid=895&fc=005027

“Chronic fatigue syndrome (CFS or CFS/ME)”

“Chronic fatigue syndrome (CFS or CFS/ME) G93.3. CFS is commonly referred to as (benign) myalgic encephalomyelitis (encephalopathy) or ME.”

etc.

Download page:  http://www.mentalneurologicalprimarycare.org/downloads.asp

Article download in PDF format: http://www.mentalneurologicalprimarycare.org/downloads/primary_care/Chronic_fatigue_syndrome.pdf

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On 31 January, in the first of this “Elephant in the Room” series of reports, I asked: Why has AfME published no information to date about the CISSD Project and its involvement with it? That was getting on for three months ago.

As the ME Association has (according to the Institute of Psychiatry) given a commitment to providing a report to its members and the wider ME community on the CISSD Project, would the MEA also give an undertaking to monitor the WHO Collaborating Centre’s involvement in the APA’s DSM revision process, its involvement in the revision process for ICD-11 and in the “Harmonization” process between DSM and ICD Chapter V: Mental and behavioural disorders, and also to monitor the progress of these processes, in general? Will the MEA be participating in the draft consultations, as stakeholders in these processes?

Given the WHO Collaborating Centre’s track record around ICD classifications, would the MEA also give an undertaking to monitor the work of Dr Sykes and his association with the WHO Collaborating Centre in this “Medically Unexplained Physical Symptoms and Syndromes Project” and to establish the nature and objectives of this project and publish a report for its members and the wider ME community, for there is currently no information about this MUPSS Project in the public domain, other than the information I have published above?

A copy of this report, a copy of the FOI response from the Institute of Psychiatry and a copy of the DSM-V and ICD-11 “Directory” are being sent to UK ME national patient organisations.

Previous reports in this series are archived at:  http://tinyurl.com/dsm-vdirectory

DSM-V and ICD-11 Directory can be downloaded in Word format here:  DSM-V and ICD-11 Directory

http://tinyurl.com/CISSDProjectMUPSSProject

Compiled by Suzy Chapman
12 April 2009

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