Please find below personal reply to myself (Connie Nelson)

from Jo Paton contact for the Guide to Mental health in Primary Care

Dear Ms Nelson

Thank you for your email.

The classification of chronic fatigue syndrome is something of a muddle. Currently, my understanding is as follows:

 a) ‘post viral syndrome’ and ‘benign myalgic encephalomyelitis’ are
 classified under G93.3 ‘Diseases of the nervous system’

 b) ‘Fatigue syndrome’ and ‘neurasthenia’ are classified under F48.0 in the mental health chapter of the classification system.

Neither classification uses the term ‘chronic fatigue syndrome’ which is the term used and understood in the UK. The term ‘chronic fatigue syndrome’ carries with it no assumptions about the cause of the illness; indeed it is used because the cause is unknown and (as best we know at present) likely to involve the interaction of multiple factors. However the illness is classified, the evidence on what works to help recovery is similar. As our guide is for GPs about mental health, we have included advice on management under the appropriate classification slot for a guide to mental health.

We are currently reviewing the text of this section of the website and expect to make changes within the next few days to a week. I’m afraid I cannot tell you exactly what those changes will be at this point.

With best wishes
Yours
Jo Paton

End.

_________________________________________________________________

“   The mission of the WHO Collaborating Centre of the Institute of Psychiatry is to support WHO in making strategic contributions to the promotion, improvement and protection of global mental health and the reduction of the global burden of mental disorder by utilising the intellectual resources of the Institute of Psychiatry and a network of clinicians, policy makers, administrators and academics in the UK, and by collaborating with other key international and national agencies with a similar goal: ”

‘to support WHO by forging international links between government policy and research in order to sensitise governments and policy makers around the world to the public health burden of mental illness and to support the development of locally appropriate strategic policies, their implementation and evaluation. Improvement of good practice and understanding about mental health and mental disorders at an international level’.


WHO Collaborating Centre for Research and Training for Mental Health,
Institute of Psychiatry, Kings College London             


Please find below response from Jo Paton to All Enquirers.

STATEMENT ABOUT THE SECTION ON CHRONIC FATIGUE AND CHRONIC FATIGUE SYNDROME ON WEBSITE www.whoguidemhpcuk.org

Date: 16 September 2001

Thank you to everyone who has sent in emails over the few weeks about the section on chronic fatigue on the website carrying the UK version of the ‘Diagnostic and management guidelines for mental disorders in primary care: ICD-10 Chapter V primary care version’.  An especial thank you to those of you who have sent detailed suggestions about strategies that sufferers from the condition may find helpful.  We have reviewed the wording of that section and checked out the issue of classification with WHO.  I promised to get back to you to let you know the outcome of that review and this is what this email is about.  We appreciate that the changes that we propose to make to the website will not meet the desires of at least some of you who contacted us.

1.   Scope of the review

Both the original, international, WHO version of the ‘Diagnostic and Management Guidelines’ and the UK version were produced following a thorough consensus process involving a wide range of people and professionals.  The sort of review that we have been conducting over the past weeks has been a very rushed one, undertaken in holiday season, involving only half of our Editorial Board who happen to be available and none of the broader consensus group and with no opportunity for a meeting to thrash out controversial or difficult points.  We consider that the only matters that it is appropriate for such a review to consider are:

a)   any matters where it is suggested that a clear error of fact has been made.  In such a case, it would be appropriate to make an immediate change and not to wait for a full process review.  We have therefore considered the issue of classification and

b)   suggestions that have been made by people with experience of the condition about what is helpful and which are clearly ‘neutral’, beneficial and non controversial. 

Several of you have made suggestions for changes that go beyond those two categories.  These include suggested changes in dosages of medications recommended and detailed suggestions about the treatment of physical symptoms.  We believe that these suggestions deserve proper consideration and discussion and we have carefully put them aside to be considered during the next full up-dating process.  We think it would be inappropriate for us to make such changes ‘on the hoof’ as it were.

2.   Classification of Fatigue Syndrome/Chronic Fatigue under ICD-10

We have sought clarification of this matter from WHO and quote below from a statement published by the then Director of the Division of Mental Health.  In ICD-10, `Fatigue Syndrome’ is classified as an inclusion term under F48.0. Neurasthenia.  `Postviral fatigue’ is excluded from this category and should be classified as G93.3.  This latter category mentions `benign myalgic encephalitis’ as an inclusion term.

“ Although in clinical practice it is often very difficult to determine the role of viral infections in chronic fatigue, and although scientifically the need for two separate categories is not well established, these have been adopted for ICD-10 because of varying recording practices. It is to be hoped that the issue of the classification of fatigue syndrome will be resolved through research in the coming years, so that adjustments can be made in ICD-11, if necessary.

“ In the meantime the following rules are recommended for the coding of `fatigue syndrome’ according to ICD-10:

“ Category F48.0 Neurasthenia [fatigue syndrome] should be used for all patients fulfilling the criteria for this disorder. If the neurasthenic syndrome develops in the aftermath of a physical disease (in particular influenza, viral hepatitis or infectious mononucleosis), the diagnosis of the latter should also be recorded.

“ Category G93.3 Postviral fatigue syndrome should be used for conditions with excessive fatigue, following a viral disease, that do not fulfil the criteria for F48.0 or where no further clinical evaluation as to these criteria are performed.”

“ The use of the term `benign myalgic encephalomyelitis’ should be avoided, until the status of this condition has been clarified.”

We have checked extensively and are sure that this statement from WHO has not be superceded by any more recent statement.

What we have decided to do and why

1.   We are using the code: F48.0 because the 1996 ‘WHO Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version’ of which our guide is an adaptation included a guideline on neurasthenia (fatigue syndrome) which is a broad inclusive category.  However, UK GPs do not use the terms ‘fatigue syndrome’ and ‘neurasthenia’.  Instead they use the terms ‘Chronic Fatigue’ and ‘Chronic Fatigue Syndrome’.  Therefore we have used the term ‘Chronic Fatigue’ and made clear that our guideline refers both to fatigue that is mild/moderate and short-lived and to fatigue that is severe and chronic.  

2.   We will delete references to “ME” in line with the advice above.  The phrase “may be known as `ME’” was in any case a reference to the fact that many people approaching their GP will use this term as it the one they are most likely to be familiar with.  We do not use it ourselves to refer to the condition.

3.   We will add a short note to the guideline explaining that Postviral fatigue syndrome and ME are classified under G93.3 (neurological disorders) and that the choice of codes reflects the variety of current recording practices and the lack of knowledge of the aetiology of fatigue syndromes, which we believe is most likely to be multi-factorial.

We would stress that this choice of classification code does not imply that we know what causes this very distressing illness or that its cause is clearly ‘mental’.  We believe that the aetiology is likely to involve a complex interaction between physical, behavioural, emotional and cognitive factors.  We would also stress that we believe that people suffering from all types of chronic conditions should be treated equally and their conditions treated seriously without any discrimination in relation to the nature of their diseases or to the chapter of the classification system where the name of the disease has been placed.

3.   Management advice

The advice on management in the guideline is in line with the following:

   the advice given in the WHO’s ‘Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version’ of which our guide is an adaptation for the UK

   the views of those involved in our consensus process. 

   the most recent and thorough reviews of evidence available, including:

   that commissioned by the UK Chief Medical Officer’s Review of CFS “Bagnall AM, Whiting T, Wright J, Sowden AJ, 2001 `The effectiveness of interventions used in the treatment/management of CFS and/or myalgic encephalomyelitis in adults and children’ NHS Centre for Reviews and Dissemination, University of York, York.  URL: http://www.york.ac.uk/inst/crd/cfsrep.pdf

   that due to be reported in the September 19th issue of the Journal of the American Medical Association..

However, we have noted and, where we can, responded to the concerns raised by some of our correspondents to the effect that:

a)   advice on graded exercise can be given by health professionals in an over-enthusiastic and insensitive way, resulting in some people over-doing this approach and suffering as a result.  We have therefore added more emphasis on the site about the importance of a cautious and slow approach.  (This emphasis was already in the advice given, but we have strengthened it.)

b)   there are lifestyle strategies that people suffering from this condition find helpful in dealing with particular symptoms and that the fact that a randomised controlled trial has not been conducted to test them doesn’t mean that others suffering from the symptoms may not benefit from trying them.  Several of you expressed the view that our information would be more helpful if this kind of advice was included.  We have therefore added some of this lifestyle strategy advice to the patient leaflet. 

We have now passed these changes on to the web designer and expect them to be made this coming week.

Thank you again for your interest.

End 

_________________________________________________________

Dear All

This email is to inform you that I have ceased to work for the Institute of Psychiatry and now have a full time job elsewhere. Although I will keep contact with the Institute (including this email address) via an honorary contract, I am no longer dealing with the UK version of the ‘Diagnostic and Management Guidelines for Mental Disorders in Primary Care: ICD-10 Chapter V Primary Care Version’. Any correspondence about this should be sent to:

Mr Derek Flannery
WHO Collaborating Centre for Research
and Training for Mental Health
HSRD
David Goldberg Building
Institute of Psychiatry
De Crespigny Park
Denmark Hill
London
SE5 8AF

Yours
Jo Paton

_______________________________________________________________

Please find below copy of airmail letter received from Geneva

WORLD HEALTH ORGANISATION
CH-1211 GENEVA 27 -
SWITZERLAND
Tel: (+41 22 ) 791 21 11
FACSIMILE: (+41 22 ) 791 31 11
http://www.who.int
Direct Facsimile: 791 4328

To: Ms Connie Nelson
From: A.C.P. L’Hours
17 September 2001

Dear Ms Nelson,

Your facsimile of 12 September to the Director-General has been passed to me for reply.

The information posted on the website in question has recently been modified on the basis of advice provided by the Classification, Assessment, Surveys and Terminology Team here at WHO Headquarters.

You will see that there is now a clear distinction between chronic fatigue, fatigue syndrome and neurasthenia on the one hand and chronic fatigue syndrome and ME on the other.

Yours sincerely,    
Andre’ L’Hours
Technical Officer,
Classification, Assessment, Surveys and Terminology (CAS),
Evidence for health Policy (GPE)


Acknowledgements


The primary care classification of mental disorders would not have been possible without the advice, support and collaboration of primary care workers, researchers, WHO Collaborating Centres and other agencies. WHO wishes to express its particular thanks to the following for their valuable collaboration:

International Version
J Banda (Zambia), D Berardi (Italy), A Bertelsen (Denmark), E Busnello (Brazil), A Carla (France), J E Cooper (UK), N Dedeoglu (Turkey), M P Deva (Malaysia), D Goldberg (UK), M Gomel (Australia), O Gureje (Nigeria), C Hunt (Australia), R Jenkins (UK), S Murthy (India), K Ogel (Turkey), C Pull (Luxembourg), D Roy (Canada), G E Simon (USA), P Verta (France), M Von Korff (USA), N Wig (India). D. Goldberg and G.E. Simon were chief consultants for the project and compiled the information for each category of disorder.

Overall management and co-ordination of the project was done by Dr T B Ustun
World Organisation of National Colleges and Academies and Academic Associations of General Practitioners/Family Physicians (WONCA).
C Bridges-Webb, H. Lamberts
World Psychiatric Association
N. Sartorius, J.J. López-Ibor Jr
National Institute of Mental Health, USA
K. Magruder, D. Regier, J. Gonzales, G. Norquist

Bristol Version
The editorial team were Catherine Crilly, Jonathan Evans, Glynn Harrison, Gemma McCann, Debbie Sharp, Cameron Smith, Ellen Wilkinson. Brendan Blair assisted with the guide to the mental health act.

UK Version
Expert input on particular topics was generously provided by the following people: Dr Sube Banerjee, Dr Tom Carnwath, Professor Anna Cooper, Dr Michael Crow, Dr Katy Drummond, Dr Jim Dyer, Dr Mike Farrell, Dr Mark Gabbay, Dr Clare Garrada, Dr Linda Gask, Professor Sir David Goldberg, Professor Sheila Hollins, Dr Gundi Kiemle, Professor Tony Kendrick, Professor Malcolm Lader, Professor Alistair MacDonald, Professor Isaac Marks, Mr John Park, Mr Stephen Popplestone, Ms Sue Plummer, Professor Jan Scott, Dr Ulrike Schmidt , Dr James Strachan, Mr David Taylor, Dr Andre Tylee, Dr John Turvill, Professor Simon Wessely. Jo Paton researched the evidence base and compiled the references and notes section. Lynette Timms checked all the contact details for the Community Resources.

UK National Editorial Team
David Goldberg, Linda Gask, Rachel Jenkins, Barry Lewiss, Jo Paton, Debbie Sharp, Andre Tylee. Overall management and co-ordination of the project was done by Jo Paton under the direction of Professor Rachel Jenkins.

UK National Consensus Group
Mrs Elizabeth Armstrong, Director, National Depression Care Training Centre, Dr Sube Banerjee, Lecturer Institute of Psychiatry, Dr Mary Burd, Primary Care Psychology and Counselling Service; Dr Richard Bynge, Lecturer, Dept of General Practice and Primary Care, UMDS; Professor Anna Cooper, Professor of Psychiatry of Learning Disability, Glasgow University; DrKatie Drummond, Psychiatrist of Disability; Ms Joan Foster, Chair, Counsellors in Primary Care; Dr Mark Gabbay, Senior Lecturer, Dept of General Practice, Liverpool University; Dr Clare Garrada, RCGP Mental Health Task Force and Senior Policy Advisor, Dept of Health; Dr Linda Gask, Reader in Psychiatry, University of Manchester; Professor Sir David Goldberg, Professor of Psychiatry, Institute of Psychiatry; Professor Glynn Harrison, Professor of Psychiatry, Bristol University; Professor Sheila Hollins, Dept of Psychiatry of Disability, St George’s Hospital; Professor Rachel Jenkins, Director, WHO Collaborating Centre for Research & Training for Mental Health; Professor Tony Kendrick, Professor of General Practice, University of Southampton; Dr David Kessler, GP, PRiMHE; Professor Malcolm Lader, Professor of Clinical Psychopharmacology, Institute of Psychiatry; Dr Chris Manning, GP, co-Chair PRiMHE; Dr Richard Maxwell, GP, PRiMHE; Ms Sue Plummer, Research Nurse, Dept of Psychiatric Nursing, Institute of Psychiatry; Professor Debbie Sharp, Professor of General Practice, University of Bristol; Professor Simon Wessley, Institute of Psychiatry; Dr Ellen Wilkinson, Lecturer, Dept of Mental Health, Bristol University; Dr Alastair Wright, GP, formerly Editor, British Journal of General Practice; Ms Jo Paton, Researcher, Institute of Psychiatry

Commenters
The following people also provided valuable comments: Marion Beeforth, Service User; Nigel Duerdoth, Mental Health Foundation; John Mellor Clark, Psychological Therapies Research Centre; Dr Peter Orton, GP Advisor, Royal Society of Medicine; Dr Salman Rawaf, Public Health Department, MSW Health Authority; Ms Jackie Carnell, General Secretary, Community Practitioners and Health Visitors Association; Ms Jo Hesketh, Director, The Queens Nursing Institute; Ms Karen Gupta, Chair, Practice Nurse Forum, Royal College of Nursing; Mr Ian Moore, Community Mental Health Team Association; Brian Rodgers, Community Psychiatric Nurse Assocation;

Permissions
We are grateful to the following organisations who kindly granted copyright permission for us to reproduce or adapt their work: The World Health Organisation Division of Mental Health and Substance Abuse: Material from Mental Disorders in Primary Care; a WHO Educational Package - patient leaflets numbers 3-2, 4, 6-1, 7-1, 7-3, 11 and 12, all the interactive cards and the diagnostic checklists. World Health Organisation Collaborating Centres for Mental Health Sydney and London - Extracts from Andrews G and Jenkins R (eds) Management of Mental Disorders, UK Edition’ Sydney: World Health Organisation Collaborating Centre for Mental Health and Substance Abuse, 1999, - used in patient leaflets numbers 1-1, 1-2, 1-3, 2, 3, 5, 7, 8-2, 9,10, 11 and the Social and Living Checklist (13-4) Chronic Fatigue Syndrome Research Unit, GKT School of Medicine, London: Material from Patient Management Package used in patient leaflets 6-2 and 6-3. Mental Health Foundation: Extract from Managing Anxiety and Depression: a self-help guide used in Patient Leaflet 1-2 Nottingham Alcohol and Drug Team: Extract from Problem Drug Use used in Patient Leaflet 8-1

This guide has been endorsed by:

·     The Royal College of General Practitioners’ Unit for Mental Health Education in Primary Care

·     The Royal College of Psychiatrists

·     The Royal College of Nursing

·     The Patients’ Association

·     Primary Mental Health Education (PriMHE)

·     The Association of Primary Care Counsellors

·     The Community Practitioners’ and Health Visitors’ Association

·     The Queens Nursing Institute

·     The Community Psychiatric Nurse Association

·     The Depression Care Training Centre

The Royal Society of Medicine gratefully acknowledges financial support for printing and distribution costs from PriMHE (Primary Mental Health Education), Janssen-Cilag Ltd and Pharmacia Corporation from unrestricted, educational grants.                                                                                                                    

Page last updated on Saturday January 6, 2001

Guide developed by the WHO Collaborating Centre for Research and Training for Mental Health, Institute of Psychiatry, Kings College London.
Website designed and maintained by CEBMH.
Copyright © 1998-2001 World Health Organization.

End

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