Trial By Error: A Letter Urging NICE to Publish ME/CFS Guideline Without Delay

https://www.virology.ws/2021/09/01/trial-by-error-a-letter-urging-nice-to-publish-me-cfs-guideline-without-delay/

By David Tuller, DrPH

This morning, I sent the following letter to Professor Gillian Leng, the chief executive of the National Institute for Health and Care Excellence.


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

Dear Professor Leng,

Please find below a letter urging NICE to publish the new ME/CFS guideline, signed by scientists, clinicians, academics and other experts from the UK, the US, and other countries.

I would be remiss not to mention another guideline for the illness, which was published last week by Mayo Clinic Proceedings. This document –“Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Essentials of Diagnosis and Management”–was written by the US ME/CFS Clinician Coalition. In a statement that highlights the larger context of the current debate, the authors note that “the United States and other governments as well as major health care organizations have recently withdrawn graded exercise and cognitive-behavioral therapy as the treatment of choice for patients with ME/CFS.”

Best–David Tuller

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 a group of scientists, clinicians, academics and other experts on the issue, we urge NICE to publish the new evidence-based ME/CFS guideline without further delay.

Thank you for your attention to this matter.

Sincerely,

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, USA

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, USA

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

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

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

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

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

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

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, USA

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

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, USA

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
Child Psychologist in Private Practice
Palo Alto, California, USA

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

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

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, USA

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

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
Dartmouth
Hanover, New Hampshire, USA

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, USA

K.N. Hng, MBChB, MRCP, PGCert in WBME, FHEA
Founder and Director, Doctors with ME
UK

Natalie Hilliard, BSc (Hons), MCSP
Physiotherapist
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, USA

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

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, USA

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

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

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, USA

Louise Kenward
Psychologist
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, USA

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
Researcher
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

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

Frøydis Lilledalen
Clinical Psychologist
Oslo, Norway

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, USA

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

David F. Marks, PhD
Editor
Journal of Health Psychology
& Health Psychology OpenLondon, 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, USA

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

Marilyn McNeill, MBBS, FRCPS, FRCPH, MPH, MHP
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, USA

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

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, USA

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

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, USA

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, USA

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, USA

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

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

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

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

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

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

Amy Small, MBBS, MRCGP, DRCOG, DFSRH
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
Pediatrician
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

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, USA

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

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

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

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

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

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

Jui Vyas, MBBS, DVD, FHEA
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

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

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

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

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

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

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