The WHO Somatisation Project: The Elephant in the Room Part Two

elephant2

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The Elephant in the Room Part Two

The WHO Somatisation Project [CISSD Project]

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

A call for transparency from Action for ME: Part Two

[This report may be republished as long as it is republished in its entirety, unchanged and with the author and source acknowledged.  Note that embedded links may drop out.]

Update: This morning I have written to Mr Nick Boatwright, Head of Finance, Action for ME, requesting clarification of the source(s) of funding for the grants of £24,000 recorded in accounting period year end 31 March 2006 and £18,750 recorded in accounting period year end 31 March 2007.  Any response received will be published, here.  [Updated: 03.02.09]

The previous report at: 

https://meagenda.wordpress.com/2009/01/31/the-who-somatisation-project-the-elephant-in-the-room/

provided some background to the issue of AfME’s involvement with the “WHO Somatisation Project” [CISSD Project]. It also raised questions and concerns about AfME’s role, their objectives and their lack of transparency around this Project…

We are still waiting for AfME to set out exactly what the nature of their relationship with the WHO has been relative to this Project, what functions and tasks AfME had agreed to undertake on behalf of the Project, where the funding for the 2006 and 2007 grants has come from and what AfME has spent this money on, and for a clear picture of what their objectives have been, as patient representatives.

In the meantime, I’d like to set out in Part Two the links between one source of funding and Dr Richard Sykes, Co-ordinator of the CISSD Project and “Honorary Member” of the WHO Collaborating Centre for Research and Training in Mental Health and Section of Mental Health Policy at Kings College London, Institute of Psychiatry.

The previous posting highlighted three grants provided to AfME in relation to this Project:

From the 2006 Accounts:

Page 15
 
Movements in restricted funds
Revenue Restricted Funds
 
WHO Somatisation Project         Incoming Resources 2006:  £24,000    Outgoing Resources 2006:  £24,000

Source of funding unspecified

From the 2007 Accounts:
 
Page 13
 
Movements in restricted funds
Revenue Restricted Funds

WHO Somatisation Project         Incoming Resources 2007:  £18,750    Outgoing Resources 2007:  £18,750

Source of funding unspecified

From the 2008 Accounts: 

Page 14

Movements in restricted funds
Revenue Restricted funds (cont’d)

Page 23
 
15 Incoming and Outgoing Resources
 
Under Charitable activities  

CISSD Project         Restricted Funds 2008:  £20,000     Total Funds 2008:  £20,000

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.

So over the past three years, AfME appears to have been in receipt of a total of £62,750 for activities relating to the “WHO Somatisation Project” [the CISSD Project].  Funding provided, AfME says, for the purposes of “lobbying the WHO” and for “disseminating the findings” of the CISSD Project. 

It’s not clear from the 2006 and 2007 Accounts, but had been thought that the source of the first two grants might have been the WHO, themselves.  If this were the case, it starts to become hellishly complicated – for why would the WHO provide funding to AfME to enable them to “lobby the World Health Organisation for the recognition of M.E. and its recategorisation as a physical illness” and why would the WHO need to be “lobbied” to recognise M.E. and recategorise it as a physical illness when Myalgic encephalomyelitis is already indexed in WHO ICD-10 at G93.3, and has been classified since 1969?

So the information AfME had given in its Accounts about the purpose of these two grants didn’t appear, on the surface, to make a lot of sense.

According to the information in the 2008 Accounts relating to the third grant, AfME would appear to have been undertaking the role of disseminators of the Project’s findings, which suggests that AfME had played an integral role as facilitator for this CISSD Project.  How and when did this come about?  Through what means was AfME engaged in disseminating the Project’s findings? Was AfME attending UK and international conferences and presentations or was Dr Richard Sykes fulfilling this role?  Who would be “producing a number of recommendations”?  The CISSD Project Group or its Co-ordinator, Dr Sykes, or AfME, themselves?

It has yet to be confirmed whether these three grants were intended to be used in full, or in part, by AfME, to support the work that Dr Sykes has done and may still be doing, in his role as Co-ordinator of the Project, or whether Dr Sykes received funding for this role from other source(s) or whether he received no funding, at all; if not for this use, what has the funding been spent on?

What little information AfME has placed in the public domain has been worded in such a way that it is not possible to disentangle what the CISSD Project Group were tasked to do, what the Project’s Co-ordinator, Dr Richard Sykes, had been co-opted to undertake and what AfME were undertaking, in the name of the Project, and for which three grants had been provided.

And this is why it is essential that AfME clearly sets out its relationship to the WHO in respect of this CISSD Project and the history of its involvement in this Project in order that its members and the wider ME community might disentangle the enmeshment between the WHO and the CISSD Project, between AfME and the WHO, between AfME and the CISSD Project, between Dr Sykes and the CISSD Project and between AfME and Dr Sykes.

Dr Richard Sykes relationship with The Hugh and Ruby Sykes Charitable Trust

Dr Richard Sykes is the brother of Sir Hugh Sykes.

Charity Commission Register of Charities

Sir Hugh is a Trustee of The Hugh and Ruby Sykes Charitable Trust and also a Trustee of a number of other charitable organisations, including the Industrial Trust.

Sir Hugh’s brother, Dr Richard Sykes PhD, was the Director of the organisation known as Westcare (Westcare UK).  In September 2002, the assets and operation of Westcare were transferred to Action for ME in what was viewed by some as having been a very controversial so called “merger”.

See:  The ONE CLICK AfME Dossier

Extract:  AfME Report and Accounts Year end 2003

http://www.afme.org.uk/res/img/resources/2002-2003%20Charity%20Accs%20Part1.pdf

Page 6 of 11

“Merger
Action for M.E. merged with the charity Westcare UK on 17th September 2002.

“Westcare UK was a smaller Bristol based charity, providing services to people with M.E. It had a high reputation in the field for its national residential courses and telephone support lines and regionally based clinical services.

“Westcare UK was a leading proponent of the practice of “pacing”, a rehabilitation approach recognised within the CMO’s report as beneficial and consistently judged to be the most helpful approach in Action for M.E.’s surveys of its members.

“Westcare UK was also renowned for its publication of occasional reports, which had national impact.

“Action for M.E. has placed on record its appreciation of the work of Westcare UK’s trustees, its founder and director Dr Richard Sykes and benefactors, including Sir Hugh Sykes, whose support made the merger possible.”

Sir Hugh Sykes was also a Trustee of Westcare.  Through The Hugh and Ruby Sykes Charitable Trust, funding was provided to help finance Westcare on a year by year basis:

Extract: Westcare Financial Statement (Document courtesy of The ONE CLICK Group)

http://tinyurl.com/westcare02financial

FINANCIAL STATEMENTS

1 July 2001 – 30 June 2002

Page 3

Trustees

[…]

Sir Hugh Sykes DL

——————-

Page 5

Report of the Trustees continued

Subsequent Events

“On 17 September 2002, the assets and operation of Westcare were transferred to Action for ME.”

——————-

Page 10

Recorded under

Notes to the Accounts

2. Donations – Businesses, Organisations & Trusts

H&R Sykes Charitable Trust*     General, £25,000      Restricted, £0         2002, £25,000          2001, £25,000

[…]

(Footnote)

*”Sir Hugh Sykes is the original settlor of Westcare UK and is the brother of the Director, Richard Sykes”**

Although in February 2007, AfME’s Communications Manager, Heather Walker, may have momentarily conflated the WHO Somatisation Project as having had something to do with Dr Richard Sykes and Westcare, a strong historical link exists between Dr Richard Sykes, Westcare, Sir Hugh Sykes and Action for ME and its so called “merger” with Westcare.

And now a contemporary relationship has been forged between AfME, the WHO Somatisation CISSD Project, Dr Richard Sykes (CISSD Project Co-ordinator and “Honorary Member” of the WHO Collaborating Centre, KCL/IoP) and his brother, Sir Hugh Sykes, via this grant of £20,000 that The Hugh and Ruby Sykes Charitable Trust has provided to AfME “to disseminate the findings of the WHO Somatisation Project”  with the aim of producing “a number of recommendations which, if accepted by the World Health Organisation, would be of direct benefit to people with M.E.”

I call publicly on Action for ME for a full report on the history of its involvement with this CISSD Project, its funding, its aims and objectives and its implications for the ME patient community.

**For definition of the term “settlor” see http://www.hmrc.gov.uk/manuals/tsemmanual/tsem1017.htm

To be continued

Compiled by Suzy Chapman

Published: 02.02.09
Updated: 03.02.09: Contacted Nick Boatwright, Finance Manager, AfME for confirmation of source of two grants in 2006, 2007 for CISSD Project

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