An Updated Letter to the NICE Chief Executive About the Unpublished ME/CFS Guideline

By David Tuller, DrPH

I sent the following letter today to Professor Gillian Leng, chief executive of the National Institute for Health and Care Excellence (NICE). It was a follow-up to the letter I sent on September 1st about the agency’s decision to delay publication of it new ME/CFS guidelines. The letter has now been signed by more than 150 experts and more than 100 UK and international charities, support groups and other relevant organizations.


Professor Gillian Leng CBE
Chief Executive
National Institute for Health and Care Excellence

Dear Professor Leng,

I am re-sending the letter about the new ME/CFS guidelines that I sent you earlier this month, with more experts signed on as well as dozens of UK and international charities, support groups and other concerned organizations. 

On a personal note, I also wanted to extend my sympathy concerning the recent loss of your husband, which I learned about from your retirement announcement. 


David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
School of Public Health
University of California, Berkeley


Dear Professor Leng,

The National Institute for Health and Care Excellence (NICE) is charged with creating evidence-based clinical guidelines for a range of conditions. Because of NICE’s reputation as an independent arbiter of scientific evidence, their guidelines influence medical practice not just domestically but in countries around the world.

Since 2017, NICE has been developing a new clinical guideline for the illness now referred to as myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. To pursue this task, NICE empanelled a well-balanced committee representing a range of perspectives and conducted a thorough review of the relevant research. The review determined that the quality of the findings in favour of the two most common treatments–graded exercise therapy and cognitive behaviour therapy—was either “very low” or merely “low.”

Appropriately, the committee considered this rigorous and up-to-date assessment in developing the new guideline, which was supposed to be published on Wednesday, August 18th. The day before this scheduled event, NICE abruptly announced a delay—not because of new information but because of apparent objections by powerful medical authorities who prefer the status quo. It is deeply troubling that NICE would alter its plans at the last moment in response to external pressure.

Making changes at this late stage or cancelling publication altogether would represent a victory of vested professional interests over the rights of patients to receive care consistent with the available research. As scientists, clinicians, academics and other experts in the field, as well as charities, support groups and other concerned organizations, we urge NICE to publish the new evidence-based ME/CFS guideline without further delay.

Thank you for your attention to this matter.


Dharam V. Ablashi, DVM, MS, DipBact, DSc (Hon)
Vice President and Scientific Director
HHV-6 Foundation
Santa Barbara, California, USA
Former Senior Investigator
National Cancer Institute
National Institutes of Health
Bethesda, Maryland, US

Joanna R Adler, BSc (Hons), MPhil (Cantab), PhD, CPsychol(Forens), FHEA
Professor of Forensic Psychology
University of Hertfordshire
Hatfield, England, UK

Nicholas Akam, BMBS, BMedSci
General Practitioner
Saxon Cross Surgery
Nottingham, England, UK

Michael Allen, PhD
Clinical Psychologist (retired)
San Francisco, California, US

Oved Amitay, R Pharm
President and CEO
Solve ME/CFS Initiative
Glendale, California, US

Alex Armstrong, BSc,MB BS,FRCGP, MA
General Practitioner and Medical Educator (retired)
Hampshire, England, UK

Christopher Armstrong, PhD
Melbourne ME/CFS Collaboration
University of Melbourne
Melbourne, Victoria, Australia

Philip Atherton, PhD
Professor of Clinical, Metabolic & Molecular Physiology
Faculty of Medicine & Health Sciences
University of Nottingham
Nottingham, England, UK

Bram Bakker, MD, PhD
Amsterdam, The Netherlands. 

Lisa F. Barcellos, PhD
Professor of Epidemiology
School of Public Health
University of California, Berkeley
Berkeley, California, US

Anna Barham, BM, MRCGP
General Practitioner
Surrey, England, UK

Lucinda Bateman, MD
Medical Director
Bateman Horne Center
Salt Lake City, Utah, US

Jonas Bergquist, MD, PhD
Director, ME/CFS Collaborative Research Centre
Biomedical Centre
Uppsala University
Uppsala, Sweden

Carlo Berti, PhD, FRCP(Ire)
Consultant Psychiatrist
Kent and Medway NHS and Social Care Partnership Trust
Kent, England, UK 

Charlotte Blease, PhD
Keane Scholar
Beth Israel Deaconess Medical Center
Harvard Medical School
Boston, Massachusetts, US

Mary-Ann Bowen, MRCGP, BMedSci, BMBS, DOH, DCH, DFSRH  
General Practitioner
Worcestershire, England, UK

Darren Brown, MCSP, BSc, MSc, MRes
Clinical Academic Physiotherapist
Chair, Long COVID Physio
London, England, UK

Michelle Bull, DHRes, MSc, Grad Dip Phys, MCSP
Chartered Physiotherapist
Co-Founder, Physios For ME
Surrey, England, UK

Robin Callender Smith, PhD
Professor of Media Law
Centre for Commercial Law Studies
Queen Mary University of London
Barrister and Information Rights Judge
London, England, UK

Linda Campbell, MSc
Advanced Nurse Practitioner
Nursing and Midwifery Council
Downpatrick, Northern Ireland, UK

Geraldine Cambridge, PhD
Professorial Research Fellow
Division of Medicine
University College London
London, England UK

Jesus Castro-Marrero, PhD
ME/CFS Research Unit
Division of Rheumatology
Vall d’Hebron Hospital Research Institute
Barcelona, Spain

Lily Chu, MD, MSHS
Independent Researcher
Burlingame, California, US

Nicola Clague-Baker, PhD
Associate Professor of Physiotherapy
University of Leicester
Co-Founder, Physios for ME
Leicester, England, UK

The Rev’d Robert B. Clarke, D Min, PhD
Marriage and family counselor, Episcopal priest
Albuquerque, New Mexico, US

Joan Crawford, CPsychol, CEng, CSci, MA, MSc
Chartered Counselling Psychologist
Chronic Pain Management Service
St Helens Hospital
St Helens, England, UK

John Cullinan, PhD
Lecturer in Economics
School of Business and Economics
National University of Ireland, Galway
Galway, Ireland

Janet L. Dafoe, PhD
President, Phoenix Rising
Child Psychologist in Private Practice
Palo Alto, California, US

David Davies-Payne, B Med Sc, MBChB, FRANZCR
Auckland, New Zealand

Ronald W. Davis, PhD
Professor of Biochemistry and Genetics
Stanford University
Stanford, California, US

Simon Decary, PT, PhD
Assistant Professor of Rehabilitation
University of Sherbrooke
Sherbrooke, Quebec, Canada

Brendan Delaney, BMBCh, MD, FRCP, FRCGP, FFCI
General Practitioner
Professor, Department of Surgery and Cancer, Faculty of Medicine
Chair in Medical Informatics and Decision Making
Imperial College London
London, England, UK

Jonathan C.W. Edwards, MD, FRCP
Emeritus Professor of Medicine
University College London
London, England, UK

Valerie Eliot Smith
Barrister and Visiting Scholar
Centre for Commercial Law Studies
Queen Mary University of London
London, England, UK

Jim Faas, MD, PhD
Insurance Physician; Specialist in Disability Law
Amsterdam, The Netherlands

Leslie J Findley, TD, MD, FRCP, FACP, MRCS, FSA(Scot)
Consultant Neurologist (retired)
Emeritus Professor of Neurology
University of London
London, England, UK

Ian M. Frayling, MA, MB, BChir, PhD, FRCPath, Hon FFPath (RCPI), FEBLM
President, Association of Clinical Pathologists
Honorary Consulting Genetic Pathologist
St Mark’s Hospital, London, England, and St Vincent’s Hospital, Dublin, Ireland
Honorary Senior Clinical Research Fellow
Inherited Tumour Syndromes Research Group
Cardiff University 
Institute of Medical Genetics
University Hospital of Wales
Cardiff, Wales, UK

Kenneth J. Friedman, PhD
Associate Professor of Physiology and Pharmacology (retired)
New Jersey Medical School
University of Medicine and Dentistry of New Jersey
Newark, New Jersey, US

Robert F. Garry, PhD
Professor of Microbiology and Immunology
Tulane University School of Medicine
New Orleans, Louisiana, US

Keith Geraghty, BSc, M Dip, MPH, PhD
Honorary Research Fellow
Centre for Primary Care
University of Manchester
Manchester, England, UK

Anna Gil, PhD
Instructor, Department of Pathology
University of Massachusetts Medical School
Worcester, Massachusetts, US

Xavier Gimeno Torrent, MA, PhD candidate
Department of Sociology
Universitat Autonoma de Barcelona
Barcelona, Spain

Ellen Goudsmit, PhD, FBPsS
Visiting Research Fellow (retired)
School of Psychology
University of East London
London, England, UK

Paul Guyre, PhD
Emeritus Professor of Microbiology and Immunology
Geisel School of Medicine
Hanover, New Hampshire, US

Thea Haldane, BSc (Hons), MBBS, MMedEd, PGcert(clin nut), FRCP
Consultant in Gastroenterology
NHS Worcestershire Acute Hospitals
Worcestershire, England, UK

Geoffrey Hallmann, BBus (Hons), LLB (Hons), DipLegPrac, DipFinPrac
Specialist in Disability and Compensation Law (retired)
Lismore, New South Wales, Australia

Maureen Hanson, PhD
Liberty Hyde Bailey Professor
Department of Molecular Biology and Genetics
Cornell University
Ithaca, New York, US

Founder and Director, Doctors with ME

Natalie Hilliard, BSc (Hons), MCSP
Co-Founder, Physios For ME
Essex, England, UK

Lynette Hodges, PhD, MSc, BSc (Hons), CEP
Senior Lecturer in Sport and Exercise
School of Sport, Exercise and Nutrition
Massey University
Palmerston North, New Zealand

Sir Stephen Holgate, BSc, MBBS, MD, DSc, FRCP, FRCPath, MEA, FMedSci
MRC Clinical Professor of Immunopharmacotherapy
Honorary Consultant Physician within Medicine
University of Southampton
Southampton, England, UK

Calliope Holingue, MPH, PhD
Research Faculty
Center for Autism and Related Disorders
Kennedy Krieger Institute
Baltimore, Maryland, US

Mady Hornig, MD
Associate Professor of Epidemiology
Columbia University Medical Center
New York, New York, USA

Brian Hughes, PhD
Professor of Psychology
National University of Ireland, Galway
Galway, Ireland

Hanna Hussain, BSc (Hons), MPharm
Reading, England, UK

Kasper Janssen, MD
Sport and Exercise Physician
Utrecht, The Netherlands

Linn Järte, MBBS, iBSc (Hons), DTM&H, DMCC
Core Trainee in Anaesthetics
Swansea Bay University Health Board
Swansea, Wales, United Kingdom

Leonard A Jason, PhD
Professor of Psychology
DePaul University
Chicago, Illinois, US

Tamar Morton Jones, BSc, MBChB, RCGP
General Practitioner
Leicester, England, UK

Keith Kahn-Harris, PhD
Senior Lecturer
Leo Baeck College
London, England, UK

Rohen Kapur, MBChB
Psychiatrist (retired)
Folkestone, England, UK

Betsy Keller, PhD
Clinical Coordinator
Collaborative Research Center for the Study of ME/CFS
Cornell University
Ithaca, New York, US

Louise Kenward
Sussex, England, UK

Jonathan Richard Kerr, BSc, MBBCh, MD, PhD, FRCPath
Consultant in Microbiology
Norfolk and Norwich University Hospitals
Norwich, England, UK

Asad Khan, FRCP, FRACP, PGCertClinEd
Consultant in Respiratory Medicine
Manchester University Hospitals
Manchester, England, UK

Anthony L Komaroff, MD
Simcox-Clifford-Higby Professor of Medicine
Harvard Medical School
Boston, MA, US

Jean-Dominique de Korwin, PhD
Professor of Internal Medicine
University of Lorraine
Department of Internal Medicine
University Hospital of Nancy
Nancy, France

Anna Liza Kretzschmar, PhD
Garvan-Weizmann Centre for Cellular Genomics
Darlington, New South Wales, Australia

Jonas R Kunst, PhD
Professor of Psychology
University of Oslo
Oslo, Norway

Eliana M Lacerda, MD, MSc, PhD
Clinical Assistant Professor
International Centre for Evidence in Disability
Faculty of Infectious and Tropical Diseases
London School of Hygiene & Tropical Medicine
London, England, UK

Joshua Leisk
Independent Researcher
Research Group for ME/CFS, Chronic Disease, Aging and Cancer
Sydney, New South Wales, Australia

Karen Leslie, BSc (Hons), MCSP
Co-Founder, Physios For ME
Liverpool, England, UK

Frøydis Lilledalen
Clinical Psychologist
Oslo, Norway

Rogier Louwen, PhD
Assistant Professor
Department of Medical Microbiology and Infectious Diseases
Erasmus University Medical Center
Rotterdam, The Netherlands

Alex Lubet, PhD
Professor of Music
Affiliated Faculty, Center for Bioethics
University of Minnesota
Minneapolis, Minnesota, USA

Steven Lubet
Williams Memorial Professor of Law
Northwestern University Pritzker School of Law
Chicago, Illinois, US

Margaret, Countess of Mar
Independent member of the House of Lords, 1975 to 2020
Founder, Forward ME
London, England, UK

David F Marks, PhD
Journal of Health Psychology
Health Psychology Open
London, England, UK

Ben Marsh, MBBS, BSc (Hons), MRCPCH
Consultant in Paediatric Neurodisability
Exeter, England, UK

Marlon Maus, MD, DrPH, FACS
DrPH Program Director
School of Public Health
University of California, Berkeley
Berkeley, California, US

Elaine Maxwell, PhD
Former Scientific Advisor
National Institute for Health Research
Oxford, England, UK

Jennifer Mayes, MBChB, MPH, MRCPsych
Consultant psychiatrist
St James Hospital
Portsmouth, England, UK

Neil R McGregor, BDS, MDSc, PhD
Clinical Associate Professor
Faculty of Medicine, Dentistry and Health sciences
University of Melbourne
Melbourne, Victoria, Australia

Public Health Consultant (retired)
Edinburgh, Scotland, UK

Karl Morten, PhD
Director of Graduate Studies
Principal Investigator, ME/CFS Research
Nuffield Department of Women’s and Reproductive Health
University of Oxford
Oxford, England, UK

Nina Muirhead, BMBCh, MRCS, MEd
Dermatology Surgeon
Director, Doctors with ME
Buckinghamshire NHS Trust
Buckinghamshire, England, UK

Ebrahim Mulla, MBChB
General Practitioner
Leicestershire, England, UK

Sarah Myhill, MBBS
Naturopathic Physician
General Practitioner (retired)
Knighton, Wales, UK

Hannah Nazri, MBChB, BSc (Hons), MSc (Oxon)
Specialty Trainee in Obstetrics and Gynaecology
York and Scarborough Teaching Hospitals NHS Foundation Trust
York, England, UK

Heidi Nicholl, PhD
CEO, Humanists Australia
Adjunct Associate Professor
Department of Physiology, Anatomy and Microbiology
La Trobe University
Melbourne, Victoria, Australia

Diane O’Leary, PhD
Independent Researcher
Philosophy of Medicine, Philosophy of Mind, and Bioethics
Asheville, North Carolina, US

Elisa Oltra, PhD
Professor of Molecular and Cellular Biology
Catholic University of Valencia School of Medicine
Valencia, Spain

Menno Oosterhoff, MD
Child and Adolescent Psychiatrist
Thesinge, The Netherlands

Nigel Paneth, MD, MPH
University Distinguished Professor
Department of Epidemiology & Biostatistics
Department of Pediatrics & Human Development
College of Human Medicine
Michigan State University
East Lansing, Michigan, US

Hans Pekelharing, MD
General Medicine
CVS/ME Medical Centre
Amsterdam, The Netherlands 

Sue Pemberton, PhD, MSc, BHSC, Dip COT, MRCOT
Therapy Director and Specialist Occupational Therapist.
Yorkshire Fatigue Clinic
York, England, UK

Derek Pheby, BSc, MBBS, LLM, MPhil, FFPH
Visiting Professor of Epidemiology (retired)
Buckinghamshire New University
High Wycombe, England, UK

Jolien Plantinga, MD
Family Physician (non-practicing) 
Zutphen, The Netherlands

Olli Polo, MD, PhD
Specialist in lung diseases and sleep disorders
Bragée ME/CFS Center
Stockholm, Sweden

Chris Ponting, PhD
Professor of Medical Bioinformatics
University of Edinburgh
Principal Investigator, DecodeME
Edinburgh, Scotland, UK

Amy Proal, PhD
Microbiologist, Research Team Coordinator
PolyBio Research Foundation
Seattle, Washington, US

Bhupesh K Prusty, PhD
Principal Investigator
Institute for Virology and Immunobiology
Würzburg, Germany

Shaun Peter Qureshi, BSc (Hons), MBChB, MD, PgDip, MRCP(UK) FHEA, MAcadMEd
Specialty Trainee in Palliative Medicine
Beatson West of Scotland Cancer Centre
Glasgow, Scotland, UK

Vincent R. Racaniello, PhD
Professor of Microbiology and Immunology
Columbia University
New York, New York, US

Richard Ramyar, LLB (Merit), MBA, PhD, ACE, PCA
Visiting Fellow
London Institute of Banking and Finance
Chair, Doctors with ME
London, England, UK

Arthur L. Reingold, MD
Professor of Epidemiology
School of Public Health
University of California, Berkeley
Berkeley, California, US

Emma Reinhold, MBBS, MRCS(Eng), MRCGP
General Practitioner
Independent Researcher
Hampshire, England, UK

Eleanor Roberts, PhD
Beeline Science Communications Ltd
London, England, UK

Peter C Rowe, MD
Professor of Pediatrics
Johns Hopkins University School of Medicine
Baltimore, Maryland, US

CP Rus, MD
Psychotherapist, Neuropsychiatrist (former)
The Hague, The Netherlands 

Georgios K Sakkas, PhD
Assistant Professor in Exercise in Clinical Populations
Department of PE and Sports Science
University of Thessaly
Trikala, Thessaly, Greece
Professor of Lifestyle Medicine
Cardiff Metropolitan University
Cardiff, Wales, United Kingdom

Michael Scott, PhD
Clinician and Researcher
Psychological Therapies Unit
Liverpool, England, UK

Rosalind Scott, Baroness Scott of Needham Market
Member of the House of Lords
London, England, UK

Liisa K Selin, MD, PhD
Professor, Department of Pathology
University of Massachusetts Medical School
Worcester, Massachusetts, US

Muhammad Shafiq, MBBS, DCP, MPH
Chief Pathologist
Mayo Hospital
Lahore, Pakistan

Charles Shepherd, MBBS
Honorary Medical Adviser to the ME Association
Buckingham, England, UK

General Practitioner
Lothian, Scotland, UK

Colin P. Smith, PhD
Professor of Functional Genomics
University of Brighton
Brighton, England, UK

Nigel Speight, MA, MBBChir, FRCP, FRCPCH, DCH
Durham, England, UK

Vance Alexander Spence, PhD
Vascular and Inflammatory Diseases Research Unit
Ninewells Hospital and Medical School 
University of Dundee
Dundee, Scotland, UK 

Philip B. Stark, PhD
Professor of Statistics
University of California, Berkeley
Berkeley, California, USA

Eleanor Stein, MD, FRCP(C)
Psychiatrist in Private Practice
Assistant Clinical Professor
University of Calgary
Calgary, Alberta, Canada

Staci Stevens, MA
Exercise Physiologist
Founder, Workwell Foundation
Ripon, California, USA

David Strain, BSc (Hons), MBChB, MD, FRCP
Clinical Senior Lecturer
University of Exeter Medical School
Chair, CFS/ME Research Collaborative
Exeter, England, UK

Caroline Struthers, MSc
Senior Research Fellow
Centre for Statistics in Medicine
University of Oxford, UK

Leonie Sugarman, PhD
Emeritus Associate Professor of Applied Psychology
University of Cumbria
Carlisle, England, UK

John Swartzberg, MD
Clinical Professor Emeritus
School of Public Health
University of California, Berkeley
Berkeley, California, US

Mary Leonie Sweeney, FRCPsych
Scotland, UK

Warren P. Tate, FRSNZ, CNZM
Emeritus Professor, Department of Biochemistry 
School of Biomedical Sciences
Centre for Brain Research 
University of Otago
Dunedin, New Zealand 

Susan Taylor-Brown, MPH, PhD
Clinical Professor of Pediatrics
University of Rochester Medical Center
Rochester, New York, USA

Francis Teeney, CPsychol
Chartered Psychologist
Clinical Division, British Psychological Society
Glenavy, Northern Ireland, UK

RJ Timmermans, MD
Sports Medicine Specialist
Son en Breugel, The Netherlands

Ronald G. Tompkins, MD, ScD
Summer M Redstone Professor of Surgery
Harvard Medical School
Boston, Massachusetts, USA

Dominic Trepel, PhD
Assistant Professor of Economics
Trinity Institute of Neurosciences
Trinity College Dublin
Assistant Professor of Health Economics
Global Brain Health Institute
University of California, San Francisco/Trinity College Dublin
Dublin, Ireland

Samuel Tucker, MD
Assistant Clinical Professor of Psychiatry (retired)
University of California, San Francisco
San Francisco, California, USA

David Tuller, DrPH
Senior Fellow in Public Health and Journalism
Center for Global Public Health
University of California, Berkeley
Berkeley, California, USA

Rosamund Vallings, MBBS, MRCS, LRCP
General Practitioner and ME/CFS Specialist
Howick Health and Medical Centre
Howick, New Zealand

Linda van Campen, MD
Stichting Cardiozorg
Hoofddorp, The Netherlands

Michael vanElzakker, PhD
Instructor, Neurotherapeutics Division
Massachusetts General Hospital/Harvard Medical School
Boston, Massachusetts, US

Marlies van Hemert, MD
Physician (non-practicing)
Woudrichem, The Netherlands

T. van Rees Vellinga, MD
The Netherlands 

Ruud C.W. Vermeulen, MD, PhD
CFS/ME Medical Centre
Amsterdam, The Netherlands 

Mark Vink, MD
Family and Insurance Physician
Amsterdam, The Netherlands

Frans Visser, MD
Stichting Cardiozorg
Hoofddorp, The Netherlands

Bert Vrijhoef, PhD
Senior Principal Investigator
Maastricht University Medical Center
Maastricht, The Netherlands
Chief Executive Officer, Panaxea
Amsterdam, The Netherlands

Clinical Senior Lecturer
School of Medicine
Cardiff University
Cardiff, Wales, UK

Emily Elizabeth Wall, MBChB
Core Trainee in Psychiatry
London, England, UK

Tony Ward, MA (Hons), PhD, DipClinPsyc
Professor of Clinical Psychology
Director, Clinical Psychology Programme
School of Psychology
Victoria University of Wellington
Wellington, New Zealand

John Whiting, MD
Physician in Private Practice
Brisbane, Queensland, Australia

Sadie Whittaker, PhD
Chief Scientific Officer
Solve ME/CFS Initiative
Glendale, California, US

Marshall Williams, Ph.D. 
Professor, Department of Cancer Biology and Genetics 
Institute for Behavioral Medicine Research
The Ohio State University 
Columbus, Ohio, US

Carolyn Wilshire, PhD
Senior Lecturer
School of Psychology
Victoria University of Wellington
Wellington, New Zealand

Carol Wilson, BSc(Hons OT), PGCE, MSc. Human Health & Environment
Clinical Specialist Occupational Therapist in CFS/ME
Royal Cornwall Hospitals NHS Trust
Cornwall, England, UK   

Paul Worthley, MBBS, Dip Pall Med, DCH
Physician, ME Trust
Physician and Clinical Lead (retired)
Burrswood Hospital
Tunbridge Wells, England, UK

Rob Wust, PhD
Assistant Professor
Faculty of Behavioural and Movement Sciences
Vrije Universiteit
Amsterdam, The Netherlands

Wenzhong Xiao, PhD
Co-Director, ME/CFS Collaborative Research Center at Harvard
Massachusetts General Hospital/Harvard Medical School
Cambridge, Massachusetts, US

Pavel Zalewski, PhD
Professor, Department of Exercise Physiology and Functional Anatomy
Collegium Medicum in Bydgoszcz
Nicolaus Copernicus University
Torun, Poland



Action For ME
Bristol, England, UK

Andover Fibromyalgia & ME Community Group
Andover, England, UK

Blue Ribbon for the Awareness of ME (BRAME)

Bristol ME Support Group
Bristol, England, UK

Bristol ME/CFS,, FM and Lyme Disease Friendship Group
Bristol, England, UK

Bury and Bolton ME/CFS & Fibromyalgia support group
Bolton, England, UK

Cambridgeshire Rural ME Group
Cambridgeshire, England, UK

Cambridge ME Support Group
Cambridge, England, UK

Central London ME Group
London, England, UK

Chester MESH (ME Self-Help)
Chester, England, UK

Chronic Illness Inclusion

Dialogues for a Neglected Illness: Wellcome Public Engagement Fund Award Project
Bristol, England, UK

Doctors With ME

Dumfries & Galloway ME and Fibromyalgia Network
Dumfries and Galloway, Scotland, UK

East London ME Group
London, England, UK

Folkestone and Hythe Myalgic Encephalomyelitis Support Group
Folkestone and Hythe, England, UK


Glasgow ME/CFS support group
Glasgow, Scotland, UK

Grace Charity for M.E.
Kent, England, UK

Guildford ME/CFS Support Group
Guildford, England, UK

Hampshire Friends with ME
Southampton, England, UK

Hertfordshire ME/CFS Support Group
Hertfordshire, England, UK

High Weald Support Group
Sussex, England, UK

Hope 4 ME & Fibro Northern Ireland
Northern Ireland, UK

Invest in ME Research
Hampshire, England, UK

Invisible ME
Cornwall, England, UK

Leeds ME Network
Leeds, England, UK


Long Covid Advocacy
Reading, England, UK

Long Covid Kids
Dorset, England, UK

Long Covid Kids Scotland
Aberdeenshire, Scotland, UK

Long Covid Scotland: Employment and Social Services Subgroup
Scotland, UK

Long Covid OT

Long COVID Physio

England South West
England, UK

England West Midlands
England, UK

Scotland, UK


ME Association
Buckingham, England, UK

ME International-UK


ME Research UK
Perth, Scotland, UK


ME Support Fife
Fife, England, UK

ME Support in Glamorgan
Cardiff, Wales, UK

ME Trust
Windsor, England, UK

ME/CFS Friendship Group in Gloucestershire
Gloucestershire, England, UK

ME/CFS Parents

Millions Missing Voice

Mums with ME/CFS

Network MESH (ME Self-Help) West London
London, England, UK

Norfolk and Suffolk ME and CFS Service Development Working Group
Norfolk and Suffolk, England, UK

North London ME Group
London, England, UK

OMEGA (Oxfordshire ME Group for Action)
Oxfordshire, England, UK

Parents of Children with ME/CFS Support Group

Patient Advisory Group to the CFS/ME Research Collaborative

Peterborough ME Support Group
Peterborough, England, UK

Physios for ME
England, UK

Richmond and Kingston ME Group
London, England, UK

Salford and Trafford ME Support Group
Salford and Trafford, England, UK

Sheffield ME and Fibromyalgia Group
Sheffield, England, UK

Shropshire ME group
Shropshire, England, UK

Solihull and South Birmingham Support Group
Birmingham, England, UK

South East London ME Support Group
London, England, UK

South-West Essex ME/CFS Group
Essex, England, UK

Stockport ME Group
Stockport, England, UK

Suffolk Youth & Parent Support Group
Suffolk, England, UK

Torbay ME/CFS/Fibromyalgia Support Group
Torbay, England, UK

Trowbridge CFS/ME Friends
Trowbridge, England, UK

VIRAS (Vector-borne Infection–Research, Analysis, Strategy)

Walsall Fibro ME Support
Walsall, England, UK

Welsh Association of ME & CFS Support (WAMES)
Wales, UK

York ME Community
York, England, UK

25% ME Group



Action CIND

American ME and CFS Society (AMMES)

Asociación nacional Fibro Protesta Ya
Alicante, Spain

CFS/ME Associazione Italiana
Aviano, Italy

Danish ME Association
Copenhagen, Denmark

Deutsche Gesellschaft für ME/CFS
Hamburg, Germany

Emerge Australia
Melbourne, Victoria, Australia

European ME Coalition
The Netherlands

Far North Coast ME/CFS Association
Lismore, New South Wales, Australia

Global Advocates 4 Myalgic Encephalomyelitis
International advocacy group

HHV-6 Foundation
Santa Barbara, California, US

Hungarian ME/CFS Support Group

Irish ME/CFS Association–for Information, Support & Research

Lost Voices Foundation
Hanover, Germany

Massachusetts ME/CFS and FM Association
Massachusetts, US


ME Advocates Ireland

ME Awareness NZ
New Zealand

ME Centraal
The Netherlands

ME Global Chronicle
Diest, Belgium

ME International-Canada

ME International

ME/CFS and Lyme Association of WA
Western Australia, Australia

ME/CFS Australia

ME CFS Foundation South Africa
Johannesburg, South Africa

ME/CFS Legal Resources Australia

ME/CFS South Australia
South Australia, Australia

ME/CFS Support (Auckland)
Auckland, New Zealand

ME/CFS/FM Support Association Qld
Queensland, Australia

ME/CVS Stichting Nederland (ME/CFS Netherlands Foundation)
The Netherlands

ME/cvs Vereniging (ME/CFS Association)
The Netherlands

ME/FM Society of BC
Vancouver, British Columbia, Canada

Millions Missing Canada

MillionsMissing Deutschland
Berlin, Germany

Millions Missing France
Méallet, France

Millions Missing Holland
The Netherlands

National ME/FM Action Network

Norges Myalgisk Encefalopati Foreningen  (Norwegian ME Association)

Open Medicine Foundation
Agoura Hills, California, US

Österreichische Gesellschaft für ME/CFS (Austrian Society for ME/CFS)
Vienna, Austria

Phoenix Rising 
US-based online forum

PolyBio Research Foundation
Seattle, Washington, US

Rest Assured Respite Charitable Trust
New Zealand

RME (National Association for ME Patients)
Gothenburg, Sweden

RME Dalarna Vastmanland
Dalarna and Vastmanland, Sweden

RME Kronoberg and Blekinge
Kronoberg and Blekinge, Sweden

RME. Ostergotland
Ostergotland, Sweden

Science For ME
International online forum

Solve ME/CFS Initiative (Solve M.E.)
Glendale, California,  US

Steungroep ME en Arbeidsongeschiktheid (ME and Disability Support Group)

Groningen, The Netherlands

Suomen lääketieteellinen ME/CFS yhdistys ry
(Finnish Medical ME/CFS Association)
Helsinki, Finland





17 responses to “An Updated Letter to the NICE Chief Executive About the Unpublished ME/CFS Guideline”

  1. CT Avatar

    Excellent, but it shouldn’t be necessary.

  2. Tracey Burgess Avatar
    Tracey Burgess

    Thank you so much David for putting all this together. As I scrolled down the very long list of people and organisations, who support your letter, I was in awe of the amassed knowledge and experience that I could see was represented here.

    For me these esteemed signatories are in complete opposition to the insidious and ignorant power play by some of the medical establishment in the UK, who should know better.

  3. Guido den Broeder Avatar
    Guido den Broeder

    Clearly none of you have read the guideline, or you simply don’t care that you’re harming patients.

    There is no future for humanity.

  4. Ryan Avatar

    The guideline is bonkers and will lead to harm. Certainly has nothing to do with M.E. Its based on a fictional ME/CFS which seems to be based on CFS and SEID criteria which doesnt define M.E. nor describe it nor is it remotely useful in regards to M.E.

    Brain and Spinal Cord Infections are something different to Fatigue Syndromes. Its just absolutely crazy. People who think its an okay guideline are basically in favour of harming patients.

    Most of the panel was compromised of BPS advocates. Then you had lay members and I have no idea if they have M.E. or not but I’m assuming NOT as most if not all actual M.E. Patients would be more inclined to be too ill to turn up to every committee and traveling to everyone just seem laughable that it could be possible in the throws of M.E.

    Greg quit the panel. Probably the most knowledgeable person on M.E. feeling he could add no more.

    That is not a good sign. Its a total stitch up for M.E. Patients.

    Nice dont dare publish it as they surely know its terrible.

    William Weir doesnt seem knowledgeable enough even though hes been around patients or if he is he hasnt made his influence shown.

    You cant have a decent guideline without knowledgeable people pushing their experience or authority threw their own knowledge onto the final draft.

    Its not acceptable that enteroviruses dont have their own guideline for a start with myalgic encephalomyelitis being one of the conditions they cause on it.

    Any guideline that combines ME & a CFS definition will lead to harm just like the last one did. They dont belong on the same guideline. Nothing to do with each other.

    Nice’s new stupid guidelines.

    Charities do fuck and all to put accurate information out which leads to harm to some of the most sick and ill with Myalgic Encephalomyelitis.

    They dont seem to care at all.

    Spread misinformation which leads to harm.

    Quite Frankly David Tuller as somebody who is being paid to do a job.

    I dont think you are doing enough. Theres people who are severely disabled from brain and spinal cord infections and its being conflated with a fatigue syndrome.

    What are you doing exactly to stop that misrepresentation?

    Fuck and all.

  5. Ryan Avatar

    If you are not part of the solution. You are part of the problem.

  6. cathrine Avatar

    Thank you for this important and clear signal David. You deserve a medal

  7. Lucie Webb Avatar
    Lucie Webb

    Am I a fantasist? Or is the UK health care system run by an anti-patient outfit called the Thought Police? They have a think tank called NICE, and a really nasty security force, aka The General Dental Council who patrol an area of wasteland, where no dentist or doctor is allowed to go, called The Jaw.
    In the yet to be authorised new Guidelines they acknowledge being aware of claims about cures for ME/cfs but shock, horror, there is a financial cost when people pursue this. Might one be permitted to know what these cures are? How disingenuous to warn of costs when the whole edifice has been constructed to prevent patients from being healed because of the System’s need to preserve their bank accounts.

  8. Guido den Broeder Avatar
    Guido den Broeder

    With some re-ordering, this is the core of what the NICE guideline says about treatment:

    1.11.1. There is currently no cure for ME/CFS.
    1.12.15. Do not offer any medicines or supplements to cure ME/CFS.
    1.10.1. Provide care for people with ME/CFS using a coordinated multidisciplinary approach.
    1.12.28. Discuss cognitive behavioral therapy.
    1.12.34. CBT for people with ME/CFS should include (…) improve the person’s activity.
    1.11.2. Discuss with people with ME/CFS the principles of energy management. Explain that it (…) uses a tailored approach (…) activity is adjusted upwards after a period of stability.

    The problem is of course that ME/CFS isn’t a specific disease so people with the 4 symptoms can have any underlying cause. There can never be a cure (or diagnostics) that helps them all.

    There exist various curative treatments for ME, but ME isn’t even mentioned in the text.

  9. jimells Avatar

    A very impressive list. Sure takes a long time just to scroll through it.

    Guido den Broeder wrote: “There is no future for humanity.”

    I am sorry that your view of the future is so grim, and I certainly understand this point of view. The efforts of so many people of good will, all working on our behalf, gives me reason to be optimistic that we will eventually build a society that can honestly call itself “civilized”.

  10. Rivka Avatar

    This struggle for basic respect, basic recognition and basic SCIENCE feels like it is never ending. Thank you so much, David, for all your efforts.

  11. Sandra Avatar

    Overwhelmed by the support stemming from individuals from many countries around the world. ME/CFS is truly a global problem, and the beliefs of the CBT/GET ideologues are not helping to solve this ever deepening problem. This is a biomedical problem calling for a biomedical solution. “Rehabilitation” will only work once the underlying disease mechanism(s) are understood and corrected. The hard work (and required financing) of uncovering this remains to be done. Thirty years of putting heads in the sand, denying the presence of organic disease, and the wishful thinking that there is a quick and easy solution of CBT/GET has gotten us nowhere. I’m hoping that things will change and we will not have to face another 30 years of wishful thinking getting us nowhere. Step one — these recalcitrant doctors need to change their mindset and attitudes. A whole paradigm shift is called for in order to correct this most unfortunate situation. Patients knew this a long time ago. I sincerely hope that NICE, holding to their position, will be an agent for change to help bring about this needed paradigm shift.

  12. jimells Avatar

    Sandra wrote: “Rehabilitation” will only work once the underlying disease mechanism(s) are understood and corrected. ”

    Many people who report partial remissions (including myself) find that rehabilitation is completely unnecessary. As soon as we recognize that we are feeling better, we do more; no magic CBT required. The real problem for people in remission is finding the restraint necessary to avoid exceeding our suddenly bigger energy reserve.

    For example, two weeks ago the Hurry Up (and die) Hospice decided I was on my deathbed and started pumping me full of dangerous and unneeded drugs. Two days ago I took a 12 hour road trip as a passenger, for the first time in more years than I care to count. How is that even possible? I wish I knew.

    The secret of success for the psychobabblers is to have a big enough pool over enough years that some trial participants will have remissions as the natural course of their illness. Those poor slobs are then presented as SUCCESS!! and proof of magic CBT.

    P.T. Barnum sure had it right.

  13. Sandra Avatar

    I fully agree with you, jimells, about “rehabilitation.” My thoughts and wording weren’t clearly expressed (sorry), but I was thinking about rehab in a more general way. I was thinking about things like a hurting leg. You don’t “rehab” your walking ability until your break is first diagnosed and well on its way to healing with proper medical care.

    Many years ago, Sir Simon, when speaking about ME, said there was no need to know the underlying cause. They could just skip this step and offer “pragmatic rehabilitation” that would take care of the problem. I was flabbergasted. How could they take care of the problem if they didn’t know what the problem was?– perhaps leading to more harm?–like from a lack of understanding of PEM and no understanding of the energy production problems at the cellular level in these patients? I couldn’t believe a doctor could say such a thing, and thought this the beginning of a downhill slide into the lack of proper medical care for ME/CFS patients with all the resulting harm from this idiotic idea. Sir Simon’s and the whole BPS’s statements about this disease never reflected my reality. But that didn’t matter. What patients had to say about their own experiences with their own disease were thoroughly discounted. And our struggles with the medical establishment had begun.

    Yes, from my own experiences, as soon as I have some improvement, I, too, naturally begin more activity. No “rehabilitation” necessary. And I dare say, that may hold true for the majority of patients.

  14. CT Avatar

    Ryan commented:

    “The guideline is bonkers and will lead to harm. ”

    There does appear to have been a focus on GET in the drawing up of this NICE guideline, (perhaps because it so clearly causes patients to deteriorate significantly or because it has received more attention recently due to long-covid), but it seems to me that other significant harms of the BPS approach have not been adequately considered or addressed alongside it. These include the inappropriate prescription of potentially damaging psych drugs, the effect of a psychological/psychiatric diagnosis on people’s ability to work or to explain why they can’t function at work or stay in employment, the effect on their ability to access medical and welfare help and the effect on family and social life and relationships when their disease is regarded as being of mainly psychological rather than physical origin. (NB – these are clear harms in all 3 of the Bio-Psycho-Social spheres.) The new guideline doesn’t appear to adequately guard against these harms so, yes, it will still lead to harm. My understanding of the NICE review process is that the ME/CFS NICE guidelines committee would have been limited by a) the review questions that were set and by b) the studies and papers that were selected for inclusion. (Please correct me if I am wrong on this.) To my mind, the resulting guideline falls way short of what it could and should have been and does little to help the majority of ME patients, but it is perhaps a very small step in the right direction (in that it may help prevent some ‘new’ patients from deteriorating) and it’s outrageous that NICE would delay its publication in this way. IMO, we really need an independent public inquiry and that’s what patient charities should be pressing for now.

  15. Guido den Broeder Avatar
    Guido den Broeder

    For patients with ME, increasing activity levels as soon as we are a little better is a mistake. We need to keep pacing ourselves or the next day, week, month or even longer will be ugly. We have neuroimmune exhaustion, not merely some feeling of malaise. Big difference.

  16. CT Avatar

    Guess what? Substandard and misapplied bio-medicine can cause iatrogenic harm, but so can substandard and misapplied Bio-Psycho-Social-medicine. It’s about time that BPS -medicine came under close scrutiny with regard to the many harms that it can cause….. or, rather, long past time, I think.

  17. peter dring Avatar
    peter dring

    Will NICE wake up