The WHO Somatisation Project: The Elephant in the Room

The Elephant in the Room

The WHO Somatisation Project [CISSD Project]

A call for transparency from Action for ME: Part One

elephant

Image | belgianchocolate | Creative Commons

Note: This report has undergone revision and updates since publication on 31 January. If quoting or reposting this report, please use the text below.

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.

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 One

The WHO Somatisation Project

In late 2006, the attention of a few of us was grabbed by three lines spotted in Action for ME’s year end Report and Accounts:

Extracts: Report and Accounts for the year ended 31 March 2006

Page 15

Movements in restricted funds
Revenue Restricted Funds

[…]

“WHO Somatisation Project         Incoming Resources 2006: £24,000    Outgoing Resources 2006: £24,000”

[…]

WHO Somatisation Project This grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its re-categorisation as a physical illness.”

Apart from this very brief reference in the 2006 Accounts, nothing had previously been reported by AfME about their involvement in this project. Nothing on AfME’s website, no statements issued and no information in AfME’s members’ magazine, InterAction. Why was a grant needed to lobby the WHO for “the recognition of M.E. and its re-categorisation as a physical illness” when ME has been classified by the WHO as a neurological condition since 1969? [WHO ICD-10, at G93.3]

Keen to establish the nature and purpose of this mysterious “WHO Somatisation project” in which AfME had hitherto been surreptitiously engaged, a question was raised by Ciaran Farrell at the Public Meeting of the GSRME, in February 2007:

Extract: Notes of the Public Meeting of the GSRME, 6 February 2007: compiled by Sarah Vero, researcher to Dr Ian Gibson, MP

Published 09.02.07

Notes on GSRME Public Meeting | 6 February 2007 | Committee Room 10

Ciaran Farrell

[…]

Also I would like to ask AFME why they received £24,000 from ? for lobbying the WHO about their document “Defence of Somatization”.  Tell me, how does that help anybody here?

Sue Waddle

I would like to hear the answer to that too. […]

For an accurate record of what was actually raised by Mr Farrell in relation to the “WHO Somatisation project” at this public meeting on 6 February 2007, I include a transcript from the audio:

Transcript, Audio recording GSRME Public Meeting | 6 February 2007

[…]

Ciaran Farrell [Person with ME]:

[…]

“…and if I may, Dr Gibson, I would like to ask a question of the Action for ME representatives, here, [Ed: Angela Murphy and Helen O’Brian attended the meeting as representatives of AfME] and that is, I’ve noticed from your Accounts that you received a sum of £24,000 from the WHO for a project called the “Somatisation Project” which is listed as lobbying the WHO on behalf of those patients who see the condition as physical”.

Could you please elucidate how you go about this and how that would actually help us here?

[Ed: Dr Ian Gibson MP (Meeting Chair) interjects and invites further questions from the floor…]

Sue Waddle [Representing Invest in ME]:

“I would also be very interested to hear the answer to that.”

[Ed: Second request for a response to this questio unacknowledged by Dr Gibson; Dr Gibson makes no move to invite a response from Action for ME and moves discussion forward to other topics; issue is left hanging.]

On 15 February 2007, I contacted Heather Walker, Communications Manager, Action for ME:

From: Suzy Chapman
Sent: 15 February 2007 14:10
To: Heather Walker
Subject: Re: Agenda APPG for ME February 22 meeting

[Unrelated material omitted]

Who would be the member of staff within AfME to talk to about the £24,000 WHO Somatisation Project, please?

Regards,

Suzy

Ms Walker responded:

From: Heather Walker
To: Suzy Chapman
Sent: Thursday, February 15, 2007 2:36 PM
Subject: RE: Agenda APPG for ME February 22 meeting

Not sure about this WHO project, Suzy, it must be before my time – but I’ll ask around.

Most likely people (fundraising, finance, CEO) are tied up in a budget meeting all afternoon and away at a Research Observatory meeting tomorrow, so it may be next week before I can get back to you though.

Kind regards,

Heather

I then received the following:

From: Heather Walker
To: Suzy Chapman
Sent: Friday, February 16, 2007 11:01 AM
Subject: RE: Agenda APPG for ME February 22 meeting

Just found out the records are held by our finance manager, but he’s away on holiday for 10 days.

I think the person involved was Richard Sykes, Westcare, so it is a while ago.

I thought this an odd and possibly obfuscatory response, since the grant was recorded in the year end 2006 accounting period, making the project in question contemporaneous – not dating from the days of Westcare.  I responded with the following:

From: Suzy Chapman
To: Heather Walker
Sent: Friday, February 16, 2007 11:01 AM
Subject: RE: Agenda APPG for ME February 22 meeting

Dear Heather,

The information concerning this grant is taken from Page 15 of AfME’s latest Annual Report and Accounts which suggests that it is a project which post dates Richard Sykes, who, I understand, retired [from involvement with Westcare] some years ago.

From Report and Accounts Year end 31 March 2006

WHO Somatisation Project Incoming: £24,000 Outgoing: £24,000

“The grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its re-categorisation as a physical illness.”

I may have missed it, but I don’t recall seeing any information in AfME’s “InterAction” about this project.

I should be pleased if you could provide the contact details for the member of staff who can provide information about the nature and purpose of this project.

Regards,

Suzy

I received the following two weeks later:

From: Heather Walker
To: Suzy Chapman
Cc: Trish Taylor ; Nick Boatwright
Sent: Friday, March 02, 2007 10:28 AM
Subject: RE: WHO Somatisation Project

Hello Suzy

Sorry for the delay, I have been working away from the office this week.

Haven’t had chance to speak to Trish, [personal information omitted as a matter of courtesy] but I have had some info from Nick [Boatwright, AfME Organisation and Finance Manager] .

The CISSD Project (Conceptual Issues in Somatoform and Similar Disorders) involves examining some of the conceptual issues which have led some psychiatrists and others to claim that CFS/ME should be classified as a Somatoform Disorder – a claim which is hotly contested by ME Organisations and others. Within a much wider field the Project will examine some of the conceptual issues and background assumptions which have led to this claim. It will also consider other ways of classifying CFS/ME. The project also involves examining the current WHO classification of CFS/ME.

I hope this helps.

Kind regards,

Heather

Heather Walker

Communications Manager
Action for M.E
Direct line: 0117 930 1323

Action for M.E. is the leading charity dedicated to improving the lives of people affected by M.E.
3rd Floor, Canningford House, 38 Victoria Street, Bristol, BS1 6BY, 0117 927 9551

www.afme.org.uk

So now we had a formal name for the project  – The CISSD Project (Conceptual Issues in Somatoform and Similar Disorders).

With Acting CEO, Trish Taylor, unavailable and with the Communications Manager, Heather Walker, giving the appearance of a member of staff who might prefer to keep a lid on this issue, I did not consider it likely that I was going to get a more expansive clarification of the nature and purpose of this project and AfME’s relationship to it. I decided to rely for the time being on my own researches.

To date, Action for ME has still to publish anything about this project or set out the nature of its own involvement and objectives other than the very cursory information published in its year end accounts:

From its last two accounting periods:

Extracts: Report and Accounts for the year ended 31 March 2007

Page 7

“Since April 2007 another three projects have completed including the WHO Somatisation project.”

Page 13

Movements in restricted funds
Revenue Restricted Funds

[…]

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

Page 14

“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.”

—————

Extracts: Report and Accounts for the year ended 31 March 2008

Page 14

“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.”

Page 23

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

[…]

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

So although the source of the grant in 2008 for £20,000 “to disseminate the findings of the WHO Somatisation Project whose research came to an end in 2006” is recorded as having been awarded by The Hugh and Ruby Sykes Charitable Trust, it isn’t at all clear where the initial grant of £24,000 in 2006 came from and either is the provenance of the £18,750 evident, recorded in year end 2007.

 

Dr Richard Sykes

Dr Richard Sykes is indeed involved in the CISSD Project but it had nothing to do with Westcare, which was absorbed into Action for ME in 2002.  Dr Sykes is listed as an “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 Psychology.  Dr Sykes is the Co-ordinator of the CISSD Project.

http://www.iop.kcl.ac.uk/departments/?locator=430&context=926

“Richard Sykes

is the co-ordinator of the interdisciplinary and international CISSD (Conceptual Issues in Somatoform and Similar Disorders) Project which will present recommendations to the World Health Organisation and the American Psychiatric Association for the revision of the current classifications in the International Classification of Diseases and the Diagnostic and Statistical Manual. The Project involves looking at the precise criteria for Somatization Disorder (if this construct is to be retained), the use of patient-friendly language, and if and how the distinction between mental and physical disorder should be drawn. He taught and researched in Philosophy for several years before retraining in social work and working in social services departments in the UK. He then set up Westcare UK, a charity for people with Chronic Fatigue Syndrome/ME which merged with Action for ME (www.afme.org.uk ) in 2002. As director of Westcare UK, he was the co-ordinator of the National Taskforce on CFS/ME, which produced an influential report in 1994.”

What’s it all about, AfME?

Why has AfME published no information to date about this Project and its involvement with it?

Have there been three tranches of funding awarded to AfME in relation to this Project, and if not, how does the figure of £18,750 (2007 accounting period) relate to the initial award of £24,000 (2006 accounting period)?

What is the source of the grant awarded in 2006 and the second grant in 2007 and why was this not disclosed in the 2006 and 2007 Report and Accounts?

Has this funding been provided to support the work of the Project Co-ordinator, Dr Richard Sykes, or is the WHO or another organisation funding Dr Sykes’ work on this Project, and if so which organisation?

To whom is Dr Richard Sykes directly accountable?

On what basis does AfME relate to the CISSD Project and to whom is AfME directly accountable with regard to the Project?

If the funding in 2006 and 2007 was for the sole use of AfME, to what purpose has this funding been put?

Is AfME prepared to publish a breakdown of how this funding has been spent in 2006 and 2007?

According to information given in the 2008 Accounts, an additional grant of £20,000 has been provided to “disseminate the findings of the WHO Somatisation Project”:

On which organisation’s behalf and to which target audience(s) is dissemination of the Project’s findings being undertaken and to whom is AfME directly accountable for this task?

How is the more recent award of £20,000 from the Hugh and Ruby Sykes Charitable Trust, which is recorded as having been awarded to “disseminate the findings of the WHO Somatisation Project”, going to be spent?

What are the implications for the ME patient community if recommendations described as being “of direct benefit to people with M.E.” were not accepted by the WHO?

 

 

While we wait for Action for ME to issue a statement on the CISSD Project and to clearly set out its role in relation to the Project and the purpose to which these grants have been put, here is some further information and links relating to the Project and some questions for the ME Association:

The make up of the CISSD Project Work-Group

International Chair: Professor Kurt Kroenke, Indiana University School of Medicine and Regenstrief Institute, Indianapolis;
UK Chair: Professor Michael Sharpe
, Department of Psychiatry, University of Edinburgh;
Principal Collaborator: Professor Rachel Jenkins, WHO Collaborating Centre;
Co-ordinator: Dr Richard Sykes, WHO Collaborating Centre.
Project Advisor: John Bradfield  [Source: WHO  ICD Update and Revision Platform ]

The Conceptual Issues in Somatoform and Similar Disorders Work-Group includes, in addition to the above: Natalie Banner, Arthur Barsky, John Bradfield, Richard Brown, Frankie Campling, Francis Creed, Veronique de Gucht, Charles Engel, Javier Escobar, Per Fink, Peter Henningsen, Wolfgang Hiller, Kari Ann Leiknes, James Levenson, Bernd Löwe, Richard Mayou, Winfried Rief, Kathryn Rost, Robert C. Smith, Mark Sullivan, Michael Trimble. [Source: http://psy.psychiatryonline.org/cgi/reprint/48/4/277 ]

See paper published by the CISSD Project Chairs and Principal Collaborator, Rachel Jenkins, in July 2007:

Review Articles

Psychosomatics 48:4, July-August 2007

Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations

Full paper in PDF format: http://psy.psychiatryonline.org/cgi/reprint/48/4/277.pdf

Full paper in html format: http://psy.psychiatryonline.org/cgi/content/full/48/4/277

or open PDF here on ME agenda CISSD review

Review
Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations
Kurt Kroenke, M.D., Michael Sharpe, M.D., and Richard Sykes, Ph.D.

Received January 14, 2007; accepted January 19, 2007. From Indiana University School of Medicine and Regenstrief Institute, Indianapolis, IN; the School of Molecular and Clinical Medicine, Univ. of Edinburgh, Edinburgh, UK, and the WHO Collaborating Centre, Institute of Psychiatry, Univ. of London, UK.

Send correspondence and reprint requests to Kurt Kroenke, Indiana Univ. School of Medicine and Regenstreif Institute, Indianapolis, IN 46202. e-mail: kkroenke@regenstrief.org

Psychosomatics 48:277-285, July-August
© 2007 The Academy of Psychosomatic Medicine

Extract: Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations, Kurt Kroenke, M.D., Michael Sharpe, M.D., and Richard Sykes, Ph.D.

“The Conceptual Issues in Somatoform and Similar Disorders (CISSD) Project (see Acknowledgment) was launched several years ago by Richard Sykes to stimulate a multidisciplinary dialogue about the taxonomy of somatoform disorders and the medical diagnoses of functional somatic syndromes (e.g., irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia). A series of three CISSD workshops, spanning a total of 6 days were held in London, UK (May 20, 2005), Oxford, UK (March 29–31, 2006), and Indianapolis, IN (May 10–11, 2006). Proceedings of the 2005 Workshop have recently been published.19–26 The 2006 workshops brought together American and European experts to further consider the key questions and potential changes to be addressed in any revision of the Somatoform Disorders category, with the explicit aim of informing the development of DSM–V.”

NB: A brief report and update, The draft report of the CISSD Project: R Sykes, was published in June 2006 in the Journal of Psychosomatics, see below.

In September 2006, Dr Sykes participated in the 26th European Conference of Pyschosomatic Research 2006, Dubrovnic, Croatia.  He is listed in the Symposium Programme as: WHO Collaborating Centre, Institute of Psychiatry, University of London. 

Dr Sykes chaired and co-chaired several plenary sessions including: Plenary Symposium 7: “Conceptual Issues in Somatoform and Similar Disorders” in which he presented on “Somatoform Disorders: What are patients’ concerns and do they matter?” and “Emerging proposals from the CISSD Project”. (C Dowrick also presented at this session.)

PDF here Sykes Dubrovnic Somatisation Symposium programme or go here http://www.hdpi.hr/plansymp.htm

——————–

In April 2007, the ME Association publicised the 2007 Melvin Ramsay Society Meeting

http://www.meassociation.org.uk/content/view/203/70/

This annual meeting was attended by Dr Charles Shepherd, The ME Association, who presented an update on the  NICE Guideline on CFS/ME.

Dr Richard Sykes also gave a presentation at this Ramsay Society meeting titled the “Conceptual issues in the classification of ME/CFS” in which he reported on the work of the CISSD Project group. 

See report by Regina Clos at: http://www.cfs-aktuell.de/mai07_1.htm  [ Auto Google translation of Regina Clos’s report:  http://tinyurl.com/sykesgermantoenglish ]

But the ME Association published no report on this meeting or on Dr Sykes’ talk. The content of this talk would have presented the ME Association with an opportunity to comment publicly on the CISSD Project, but the Association has issued no public comment regarding the CISSD Project, at all, nor its implications for the ME/CFS community. If the CISSD Project has been discussed at MEA Board of Trustees meetings, it has not been reported on in the summaries of its board meetings and there are no references anywhere to the CISSD Project on the ME Association’s website.

Some questions for the ME Association

Has this CISSD Project, AfME’s involvement in it and the Project’s implications for ME/CFS patients been discussed amongst the members of the ME Alliance?

[Note:  The status of the ME Alliance remains unclear, because Sir Peter Spencer has not been prepared to answer questions regarding its current status.]

Why has this CISSD Project and its implications never been discussed at a meeting of the APPG on ME?

The ME Association is surely aware of this Project – why has the Association had nothing at all to say about the Project?

Has the ME Association been approached for involvement in this Project and has there been any input by the Association?

Is the ME Association prepared to publish a commentary around their understanding of this Project and setting out the implications of the Project for the benefit of its members and for the wider ME community?

I do not consider that we should have to wait until AfME “disseminate the findings of the WHO Somatisation Project” for detailed information about this Project, what AfME’s involvement in it has been over the past three years and how these various grants have been spent.

Is the ME Association prepared to challenge AfME to be open and transparent about the Project as a whole, and AfME’s own involvement in it?

 

Further reading:

Regina Clos has published a copyright report of the Ramsay Society Meeting 2007 at:

http://www.cfs-aktuell.de/mai07_1.htm

at which Dr Richard Sykes presented on the “Conceptual issues in the classification of ME/CFS”.

The report is in German and you will need to use an auto translator for the gist.

Update:  Auto Google translation of Regina Clos’s report:  http://tinyurl.com/sykesgermantoenglish

———————

 

Published paper: 2006:

Somatoform disorders in DSM-IV: mental or physical disorders?

http://www.ncbi.nlm.nih.gov/pubmed/16581355

[Abstract]

Sykes R.

J Psychosom Res. 2006 Apr;60(4):341-4.

WHO Collaborating Centre, Institute of Psychiatry, University of London, United Kingdom. richardsykes@blueyonder.co.uk

OBJECTIVE: To examine analytically the question of whether the characterization of somatoform disorders (SFDs) in Diagnostic and Statistical Manual, Fourth Edition (DSM-IV) provides adequate grounds for classifying them as mental disorders rather than as physical disorders.

METHODS: Analytical examination.

RESULTS: There are prima facie grounds for classifying SFDs as physical disorders since they are characterized by physical symptoms. The characterization of SFDs in DSM-IV does not provide adequate grounds for classifying them as mental disorders.

CONCLUSION: The spectrum of SFDs is drawn too widely in DSM-IV. At least some of the conditions now listed as SFDs in DSM-IV should be either given a dual diagnosis or classified simply as physical disorders.

PMID: 16581355 [PubMed – indexed for MEDLINE]

——————–

Published report: 2006:

The draft report of the CISSD project R.D. Sykes
Journal of Psychosomatic Research June 2006 (Vol. 60, Issue 6, Pages 663-664)

http://www.jpsychores.com/issues/contents?issue_key=S0022-3999%2806%29X0365-3

[Subscription only; no Abstract available; not indexed on MEDLINE]

The Editor of the Journal of Psychosomatic Research is Professor Francis Creed. Francis Creed is Professor of Psychological Medicine in the Psychiatry Research Group , School of Medicine, University of Manchester and was a member of the CISSD Project Work-Group. Professor Creed has also been a member of the American Psychiatric Association’s DSM-V workgroup on Somatic Distress Disorders since 2007.

———————-

On 30 January, Stephen Ralph of MEActionUK published a commentary via Co-Cure in which the following WHO document was highlighted and which will be of interest:

Summary Report of the 3rd Meeting of the International Advisory Group for the Revision of ICD-10 Mental and Behavioural Disorders, 11 – 12 March, 2008

http://www.who.int/mental_health/evidence/icd_summary_report_march_2008.pdf

———————-

Paper: 2007:

Current Opinion in Psychiatry:Volume 20(2)March 2007p 143-146

http://tinyurl.com/riefisaacpaper

[Abstract]

Are somatoform disorders ‘mental disorders’? A contribution to the current debate [Behavioural medicine: Edited by Winfried Rief and Mohan Isaac] Rief, Winfried a; Isaac, Mohan b

a Clinical Psychology and Psychotherapy, University of Marburg, Marburg, Germany b University of Western Australia, Perth, Australia

Abstract

Purpose of review: During the last 2 years, a debate has started over whether the somatoform symptoms / medically unexplained symptoms are wrongly placed under the category of mental disorders (section F in International classification of diseases-10 and in Diagnostic and statistical manual for mental disorders-IV).

Recent findings: Most experts on medically unexplained symptoms agree that there is a substantial need for revision of the diagnoses of somatoform disorders. While some authors suggest moving the somatoform disorders from axis I to axis III, others suggest improving the classification of these syndromes on axis I, such as by using empirically derived criteria and by introducing psychological descriptors which justify the categorization as a mental disorder. In contrast to the situation when the last version of Diagnostic and statistical manual for mental disorders was published, new empirical data has shown some psychological and behavioural characteristics of patients with somatoform symptoms. These and other empirically founded approaches can be landmarks for the revision of this section in Diagnostic and statistical manual for mental disorders-V and International classification of diseases-11.

Summary: The classification of somatoform disorders as ‘mental disorders’ could be justified if empirically founded psychological and behavioural characteristics are included into the classification process. Attention focusing, symptom catastrophizing, and symptom expectation are outlined as possible examples of involved psychological processes.

PMID: 17278912 [PubMed – indexed for MEDLINE]

———————-

Review

Journal of Psychopathology 2008;41:4-9 (DOI: 10.1159/000109949)

Validity of Current Somatoform Disorder Diagnoses: Perspectives for Classification in DSM-V and ICD-11

Free PDF of full paper: http://content.karger.com/produktedb/produkte.asp?typ=fulltext&file=000109949

or open here on ME agenda  PDF: ICD-11

Bernd Löwe a, Christoph Mundt b, Wolfgang Herzog a, Romuald Brunner c, Matthias Backenstrass b, Klaus Kronmüller b, Peter Henningsen d

Departments of a Psychosomatic and General Internal Medicine, b Psychiatry and c Child and Adolescent Psychiatry, Center of Psychosocial Medicine, University of Heidelberg, Heidelberg, and d Department of Psychosomatic Medicine and Psychotherapy, Technical University of Munich, Munich, Germany

———————–

Continued in Part Two, with a report on the links between Dr Richard Sykes and Sir Hugh Sykes:
https://meagenda.wordpress.com/2009/02/02/the-who-somatisation-project-the-elephant-in-the-room-part-two/

Compiled by Suzy Chapman

Published: 31.01.09
Revised: 01.02.09
Updated: 03.02.09: Addition, confirmation that Dr C Shepherd (MEA) attended and presented at Ramsay Society Annual Meeting 2007
Updated: 04.02.09: Addition, Abstract, R Sykes 2006 paper; Correction, URL for html version of paper “Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations”; Addition, Abstract, 2007 review: “Are somatoform disorders ‘mental disorders’? A contribution to the current debate” [Behavioural medicine Edited by Rief, Isaac]
Update: 05.02.09: Addition, TinyURL for auto translation report on Ramsay Society Meeting 2007
Update: 21.02.09: Addition, link, R Sykes, 2006 report, The Draft report of the CISSD project; Information relating to Prof Francis Creed.

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