Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS): good practice statement

Appendix 5 – Group membership and process

2010 group process

The original draft of the Scottish Good Practice Statement on ME-CFS was produced in May 2009, led by Dr Gregor Purdie. A Working Group was established and tasked to peer review this guidance and worked over the period September 2009-August 2010, chaired by Professor Lewis Ritchie. The task was divided into two further workstreams – two subgroups were established – the first was led by Dr Gregor Purdie to produce a summary patient guidance document/leaflet; the second by Dr Alan Carson to produce a summary Quick Reference Clinical Guide to the Scottish Good Practice Statement on ME-CFS.

Clinical and patient peer review was sought on the draft guidance – see below for further details. The draft guidance, comprising three documents, (the revised draft Scottish Good Practice Statement, the patient leaflet and the quick reference clinical guide), were circulated to members of the Cross Party Group on ME (CPG), on 23rd/26th April 2010 and to Mr Phil Mackie, Lead Author of the Scottish Public Health Network's Health Care Needs Assessment of Services for people living with ME-CFS. Dr Carson and Prof Ritchie attended to discuss the draft guidance at an additional, specially-convened meeting of the CPG on 5th May and Prof Ritchie attended the meeting of the CPG on 26th May to further discuss the draft guidance. Dr Gregor Purdie, Mr Will Scott and Sir Peter Spencer, members of the Working Group, were also present at both CPG meetings. Comments were invited from members of the Cross Party Group following their review of the draft guidance, and over 100 were received and considered, primarily from members but also from other interested parties. The draft guidance was extensively revised, taking into account all comments received from the members of the Cross Party Group, other interested parties and the nominated patient and clinical peer reviewers, listed below. As is standard peer review practice, while all comments received were carefully considered, the final versions of the three guidance documents may not reflect the specific views of individual contributors.

2010 group membership

Working Group

Dr Alan Carson, Consultant in Neuropsychiatry, NHS Lothian Dr Kenneth Lawton, General Practitioner, Aberdeen, NHS Grampian and Chairman, RCGP Scotland Dr Gregor Purdie, General Practitioner, Castle Douglas and Clinical Lead for ME, NHS Dumfries & Galloway Prof Lewis Ritchie, General Practitioner, Peterhead, NHS Grampian and Mackenzie Professor of General Practice, University of Aberdeen [Group Chair] Will Scott, Scottish Government Health Directorates Sir Peter Spencer, Chief Executive, Action for M.E.

Working Group Secretariat:

Hazel Dawson, Projects Worker Scotland, Action for M.E. and Craig Bell, Scottish Government Health Directorates. [Heather Walker, Head of Scottish Good Practice Statement on ME-CFS Communications, Action for M.E, attended the first meeting of the Working Group. Susan Webster, Project Co-ordinator Scotland, Action for M.E., kindly deputised for Hazel Dawson at one meeting of the Working Group and facilitated the attendance of Working Group members to the Cross Party Group].

Patient Guidance Document Subgroup

Liz Blackadder, Patient Representative Ewan Dale, Patient Representative Hazel Dawson, Projects Worker Scotland, Action for M.E. Dr Gregor Purdie, General Practitioner, Castle Douglas and Clinical Lead for ME, NHS Dumfries & Galloway [Subgroup Lead]

Clinical Guidance Subgroup

Dr Alan Carson, Consultant in Neuropsychiatry, NHS Lothian [Subgroup Lead] Dr Carl Counsell, Senior Lecturer in Medicine (Neurology), University of Aberdeen and Honorary Consultant Neurologist, NHS Grampian Dr Kenneth Lawton, General Practitioner, Aberdeen, NHS Grampian and Chairman, RCGP Scotland Dr Gregor Purdie, General Practitioner, Castle Douglas and Clinical Lead for ME, NHS Dumfries & Galloway Dr David Watson, General Practitioner, Aberdeen, NHS Grampian

Patient Representative Peer Reviewers of the Patient Guidance Document Dr Emily Ackerman Adrienne Rifkind Dr Anna Wood A further two patient representative peer reviewers also kindly provided comments

Health Professional Peer Reviewers of the Clinical Guidance Dr Katy Auckland, Consultant in Paediatric and Adolescent Psychiatry, NHS Lothian Professor D Nicholas Bateman, Professor of Clinical Toxicology, University of Edinburgh and Director of the National Poisons Information Service (NPIS), Edinburgh Dr Jim Beattie, Consultant in Medical Paediatrics, NHS Greater Glasgow and Clyde Professor Ian Bone, Honorary Senior Research Fellow (Neurology), School of Medical and Cardiovascular Studies, Western Infirmary Glasgow Dr Tom Brown, Consultant in Liaison Psychiatry, NHS Greater Glasgow & Clyde Dr Robert Dickie, General Practitioner, Stornoway, NHS Western Isles Dr James Douglas, General Practitioner, Fort William, NHS Highland Professor Peter Helms, Professor of Child Health, University of Aberdeen and Honorary Consultant in Paediatrics, NHS Grampian Dr Patricia Jackson, Consultant in Community Child Health, NHS Lothian Dr Catriona Kemp, General Practitioner, St Margaret's Hope, NHS Orkney Dr Derek King, Consultant in Haematology (Adult and Paediatric), NHS Grampian Dr Brian Lennox, General Practitioner, Ayr, NHS Ayrshire & Arran Scottish Good Practice Statement on ME-CFS Dr Pauline Lockhart, Clinical Lecturer in Primary Care, University of Dundee and General Practitioner, NHS Tayside Dr Paul MacIntyre, Consultant Cardiologist,

NHS Greater Glasgow & Clyde

Professor Kenneth McColl, Professor of Gastroenterology, University of Glasgow and Honorary Consultant Gastroenterologist, NHS Greater Glasgow & Clyde Dr Lucy Munro, General Practitioner, Grangemouth, NHS Forth Valley Dr Jill Murie, General Practitioner, Forth, NHS Lanarkshire Dr Tom Pullar, Consultant Physician and Rheumatologist, NHS Tayside Dr R Andrew Seaton, Consultant in Infectious Diseases and General Medicine, NHS Greater Glasgow & Clyde Dr Robert Simpson, Consultant in Paediatrics, NHS Dumfries and Galloway Dr Shona Valentine, Associate Specialist in Community Child Health, NHS Lothian Professor Alan (Mike) Wallace, Consultant Clinical Scientist, NHS Greater Glasgow & Clyde (deceased) Professor David Weller, Mackenzie Professor of General Practice, University of Edinburgh and General Practitioner, NHS Lothian Dr Derek Wooff, General Practitioner, Stranraer, NHS Dumfries & Galloway

Acknowledgements

The original draft Scottish Good Practice Statement prepared in May 2009 contained the following acknowledgement:

'The publication of this document has been led by Dr Gregor Purdie, Clinical Lead for ME, NHS Dumfries & Galloway on behalf of the Scottish Government Health Directorates. It has been produced in consultation with Scottish medical practitioners, people with ME and their representatives, ME charities and support groups and professionals in health, social care and research.'

In relation to the peer review and revision process of the draft document, undertaken between September 2009 and August 2010, the members and chairman of the Working Group would like to express their appreciation to all who assisted in their task.

Firstly, particular thanks are due to all of the individuals who contributed as subgroup members or as peer reviewers – they are identified by name in Appendix 5. Thanks are also due to the Convener of the Cross Party Group on ME, Mr Andy Kerr MSP, for facilitating discussion with its members of draft versions of the guidance. Very many comments were received from members of the Cross Party Group and other interested parties, following review of draft versions of the guidance. The Working Group is greatly appreciative of their contributions and also for the comments provided by the Scottish Neurosciences Council.

Finally, special thanks are due to Hazel Dawson, Susan Webster and Craig Bell, for their steadfast administrative support throughout.

Lewis Ritchie Chairman,

on behalf of the Guidance Working Group

August 2010