The Elephant in the Room Part Five
The WHO Somatisation Project [CISSD Project]
A call for transparency from Action for ME: Part Five
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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Professor Rachel Jenkins (Principal Collaborator, CISSD Project, Director of the WHO Collaboration Centre, Institute of Psychiatry) had advised me, on Thursday, that the two initial grants are nothing to do with the WHO Collaborating Centre [Institute of Psychiatry] and referred me back to Action for ME for this information.
Yesterday, I contacted Professor Kurt Kroenke, International Chair of the CISSD Project, to ask if he could shed some light on the issue of Action for ME’s funding for the “WHO Somatisation Project”.
See: The Elephant in the Room Part Four:
I have received a response, this morning. Professor Kroenke advises that he had nothing to do with the finances of the Project and is unable to clarify the source of the grants in question. He has suggested that I might contact Professor Michael Sharpe (UK Chair, CISSD Project) or Dr Richard Sykes (Co-ordinator).
There are mounting concerns in the UK and beyond about how little information patient organisation Action for ME has chosen to give its membership about its relationship to this Project.
This has made it impossible for the organisation’s constituency of interest to evaluate whether Action for ME has achieved its objectives on behalf of the patient community it represents, since its membership and the wider ME/CFS patient community has been unable to establish on what basis it relates to the CISSD Project Work-Group, to its Co-ordinator, to the WHO, Geneva and to the WHO Collaborating Centre and because it has failed to coherently define what its aims and objectives were in relation to the Project while it was in progress, and in relation to the dissemination of the research findings and the production of recommendations to the WHO, once the Project’s research had been completed, in 2006.
“WHO Somatisation Project This grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its recategorisation as a physical illness.”
makes no sense at all, since ME has been classified by the WHO since 1969 (ICD-10: G93.3). So Action for ME’s membership is rightly concerned to establish exactly what it had spent the first £42,750 on and where this funding had come from.
Action for ME has since been provided with additional funding of £20,000 [a grant from The Hugh and Ruby Sykes Charitable Trust, recorded in accounting period 2007-2008*] for, it says, the dissemination of the findings of the CISSD Project’s research. This suggests that Action for ME played an integral role within the Project and its co-ordination – a role which has yet to be defined by Action for ME or the CISSD Project Group Co-ordinator.
It is proving very difficult to disentangle exactly what Action for ME’s association with this CISSD Project has been over the past three years, what the organisation has undertaken in the name of the Project and to what use it has put a total of £62,750 funding. Professor Kroenke has now been informed of these concerns.
*The Hugh and Ruby Sykes Charitable Trust has very strong links with Westcare UK and Action for ME. Sir Hugh Sykes is the brother of Dr Richard Sykes, CISSD Project Co-ordinator. Through the Trust, donations were made on a regular basis to Westcare UK. Westcare UK was engulfed by Action for ME in 2002 in a controversial so called “merger” made possible, according to Action for ME, through the support of Sir Hugh Sykes who was the orginal settlor of Westcare UK and also a Trustee of Westcare UK.
See: The Elephant in the Room Part Two:
This morning, I have written the following to Professor Michael Sharpe and I will update this report when I have received a response from him:
From: Suzy Chapman
To: Prof Michael Sharpe
Cc: Prof Kurt Kroenke
Sent: Friday, February 06, 2009
Subject: In connection with the CISSD (Conceptual Issues in Somatoform and Similar Disorders) Project
Re: In connection with the CISSD (Conceptual Issues in Somatoform and Similar Disorders) Project
Dear Professor Sharpe,
I have some queries in connection with the CISSD Project which I am hoping you may be able to shed some light on. I have already been in contact with Professor Rachel Jenkins and Professor Kurt Kroenke, in the last couple of days, neither of whom has been able to answer my queries. Dr Kroenke has suggested that I contact you.
I understand that the International Chair is Professor Kurt Kroenke, the Principal Collaborator, Professor Rachel Jenkins and that Dr Richard Sykes is the Co-ordinator of this interdisciplinary and international CISSD (Conceptual Issues in Somatoform and Similar Disorders) Project. I write to you as UK Chair of the Project.
The UK national patient organisation and registered charity, Action for ME, recorded in its 2006, 2007 and 2008 Annual Report and Accounts that the organisation had been in receipt of three grants in relation to the CISSD Project:
A grant of £24,000 recorded for accounting year 05 to 06
A second grant for £18,750 recorded for accounting year 06 to 07
A third grant for £20,000 recorded for accounting year 07 to 08
The only information that Action for ME has published in relation to its involvement with this Project is as follow (taken from copies of its Annual Reports and Accounts):
“WHO Somatisation Project 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.” [Source of grant unspecified]
(This statement does not make a lot of sense, given that ME is already recognised by the WHO and classified in ICD-10 at G93.3)
“CISSD Project 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.”
Professor Rachel Jenkins has advised me that the funding received by Action for ME has nothing to do with the WHO Collaborating Centre; Professor Kroenke has told me that he had nothing to do with the finances of the Project and he wasn’t able to provide me with information about the source of the first two grants.
According to its Annual Report and Accounts for year ending March 2008, Action for ME has since been provided with additional funding by a Charitable Trust in order, it states, to “disseminate” the findings of the CISSD Project’s research. Which suggests that Action for ME performs an integral role within the Project and the Project’s Co-ordination – a role which has yet to be defined by Action for ME, by the CISSD Project Group, by the UK WHO Collaborating Centre or by the WHO, itself.
It is proving very difficult to disentangle exactly what Action for ME’s relationship with this CISSD Project has been over the past three years, what the organisation has undertaken in relation to the Project and in the name of the Project, to what use it has put a total of £62,750 funding.
Additionally, the source of the first two grants remains unclarified. Were these two grants in 2005-2006 and 2006-2007 provided to Action for ME by the WHO?
Or was this funding provided directly to the Project, by the WHO, or by another organisation, for the use of Action for ME and if so, for what purpose(s)?
As UK Chair of the Project, I would welcome clarification of the source of the first two grants and clarification of Action for ME’s relationship to the CISSD, during the life of the Project, and in relation to the subsequent undertaking of “dissemination of findings” and the making of recommendations to the WHO.
Could you also confirm to whom Action of ME is directly accountable with regard to its involvement in, or association with the Project and the name of the person who is responsible for the Project’s finances?
As a matter of courtesy, I have copied Professor Kroenke into this correspondence.
To be continued
The URL for Part Five is:
For previous postings:
The Elephant in the Room Part One:
The Elephant in the Room Part Two:
The Elephant in the Room Part Three:
The Elephant in the Room Part Four: