By David Tuller, DrPH
This morning, I e-mailed the following letter to Dr Karla Soares-Weiser, Cochrane’s editor-in-chief, about the decision to abandon a planned update of a review of exercise therapy for ME/CFS. (I cc’d Toby Lasserson, Cochrane’s deputy editor-in-chief.) That decision was made public in an abrupt announcement dumped on the patient community right before the Christmas holidays. Cochrane appears to be oblivious to how its actions have harmed not only patients but its own reputation.
The subject line of the e-mail: “Request for withdrawal of review of exercise therapy for chronic fatigue syndrome”
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Dear Dr Soares-Weiser—
In 2019, Cochrane published amendments to a previously conducted systematic review that recommended exercise therapy for chronic fatigue syndrome. [1] Given that post-exertional malaise (PEM) is a core symptom of what is now generally called myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), recommendations to increase exercise can lead to serious relapses. [2]
When these amendments were published, you acknowledged some of the review’s shortcomings, noting in a statement that it was “based on a research question and a set of methods from 2002, and reflects evidence from studies that applied definitions of ME/CFS from the 1990s.” [3] The earlier ME/CFS definitions used in those trials did not require the presence of PEM, raising uncertainty about whether the study samples truly represent the patient population. To address these issues, Cochrane proposed a comprehensive process to produce an updated review.
In December, five years into this process, Cochrane blindsided the ME/CFS community with an abrupt announcement that it was abandoning the update project, citing “insufficient new research.” [4] The same month, Cochrane republished the old, amended version with a 2024 date, creating the false impression that the review itself had, in fact, been updated. [5]
The argument about “insufficient new research” cannot be taken at face value. The promise to update the amended review had nothing to do with the presence or absence of new research. Cochrane committed to the update project because the organization’s leadership understood that the published review was inadequate for multiple reasons, among them that it contained limited information about potential harms. Despite having articulated such concerns in the past, Cochrane has now reaffirmed its support for this flawed document while revising nothing but the date of publication.
The amended exercise therapy review continues to pose a risk to people with ME/CFS, including those with Long COVID who meet diagnostic criteria. [6] It should be withdrawn. Failing that, the review should be prominently tagged with an editorial note making clear that it is out-of-date and should not be used for clinical decision-making.
Sincerely,
Nicola Baker
Physios for ME
School of Allied Health Professions and Nursing
University of Liverpool
Liverpool, England, UK
Lucinda Bateman
Bateman Horne Center
Salt Lake City, Utah, US
Jonas Bergquist
ME/CFS Collaborative Research Centre
Biomedical Centre
Uppsala University
Uppsala, Sweden
Hector Bonilla
Post COVID-19 Syndrome (PACS) Clinic
Division of Infectious Diseases
Stanford Medicine
Stanford, California, U.S.
Robin Callender Smith
Centre for Commercial Law Studies
Queen Mary University of London
London, England, UK
Mario R. Capecchi
Department of Human Genetics
University of Utah School of Medicine
Salt Lake City, Utah, U.S.
Joan Crawford
Chronic Pain Management Service
St Helens Hospital
St Helens, England, U.K.
Jennifer Curtin
Real Time Health Monitoring
San Francisco, California, U.S.
Janet L. Dafoe
Child Psychologist (private practice)
Palo Alto, California, U.S.
David Davies-Payne
Department of Radiology
Starship Children’s Hospital
Auckland, New Zealand
Ronald Davis
Departments of Biochemistry and Genetics
Stanford University School of Medicine
Stanford, California, U,S.
Rae Duncan
Department of Cardiology
Newcastle upon Tyne Hospitals
Newcastle upon Tyne, England, U.K.
Jonathan Edwards
Division of Medicine (emeritus)
University College London
London, England, U.K.
Valerie Eliot Smith
Centre for Commercial Law Studies
Queen Mary University of London
London, England, U.K.
Andrew Ewing
Department of Chemistry & Molecular Biology
University of Gothenburg
Gothenburg, Sweden
Mark Faghy
Biomedical and Clinical Exercise Science Research Theme
University of Derby
Derby, England, U.K.
Keith Geraghty
Centre for Primary Care and Health Services Research
University of Manchester
Manchester, England, U.K.
Paul Guyre
Department of Microbiology and Immunology
Geisel School of Medicine
Dartmouth
Hanover, New Hampshire, U.S/
Mady Hornig
CORe Community, Inc.
New York, NY, U.S.
Brian Hughes
Department of Psychology
University of Galway
Galway, Ireland
Leonard Jason
Center for Community Research
DePaul University
Chicago, Illinois, U.S.
David Joffe
Respiratory and Sleep Medicine
Royal North Shore Hospital
Sydney, New South Wales, Australia
Binita Kane
Biomedical and Clinical Exercise Science Research Theme
University of Derby
Derby, England, U.K.
David Kaufman
Center for Complex Diseases
Seattle, Washington, U.S.
Douglas Kell
Department of Biochemistry, Cell and Systems Biology
University of Liverpool
Liverpool, England, U.K.
Asad Khan
Consultant in Respiratory & General Medicine (medically retired)
Manchester, England, U.K.
Steven Lubet
Northwestern Pritzker School of Law
Northwestern University
Chicago, Illinois, U.S.
Ben Marsh
Consultant in Paediatric Neurodisability (medically retired)
Exeter, England, U.K.
Robert Naviaux
Departments of Medicine, Pediatrics, and Pathology
UC San Diego School of Medicine
San Diego, California, U.S.
Chris Ponting
Institute of Genetics and Cancer
University of Edinburgh
Edinburgh, Scotland, U.K.
Etheresia Pretorius
Department of Physiological Sciences
Stellenbosch University
Stellenbosch, Western Cape, South Africa
Department of Biochemistry, Cell and Systems Biology
University of Liverpool
Liverpool, England, U.K.
David Putrino
Department of Rehabilitation Medicine
Icahn School of Medicine at Mount Sinai
New York, New York, U.S.
Peter Rowe
John Hopkins Children’s Center
Johns Hopkins University School of Medicine
Baltimore, Maryland, U.S.
Spela Salamon
Long Covid Expert Advisory Group
World Health Network
Leoben, Austria
Charles Shepherd
ME Association
Buckingham, England, U.K.
Kristian Sommerfelt
Department of Clinical Science (emeritus)
University of Bergen
Bergen, Norway
Nigel Speight
Consultant Paediatrician (semi-retired)
Durham, England, UK
Michael Stingl
Neurology Department
Votivpark Specialist Medical Center
Vienna, Austria
John Swartzberg
Division of Infectious Diseases and Vaccinology (emeritus)
School of Public Health
University of California, Berkeley
Berkeley, California, U.S.
Susan Taylor-Brown
Department of Pediatrics
University of Rochester Medical Center
Rochester, New York, USA
Karl Johan Tronstad
Department of Biomedicine
University of Bergen
Bergen, Norway
Mark Vink, MD
Family and Insurance Physician
Amsterdam, The Netherlands
William Weir
Consultant in Infectious Diseases (private practice)
London, England, UK
Rob Wust
Faculty of Behavioural and Movement Sciences
Vrije Universiteit
Amsterdam, The Netherlands
Wenzhong Xiao
Ronald G. Tompkins ME/CFS Collaboration
Harvard Medical School Affiliates
Harvard Medical School
Boston, Massachusetts, U.S.
David Tuller (corresponding author)
Center for Global Public Health
University of California, Berkeley
Berkeley, California, U.S.
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References
1. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews. 2019, Issue 10. Art. No.: CD003200. Accessed February 18, 2025, at: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub8/full
2. Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management. London: National Institute for Health and Care Excellence (NICE); 2021 Oct 29. Accessed February 18, 2025, at: https://www.nice.org.uk/guidance/ng206/resources
3. Cochrane. Publication of Cochrane Review: ‘Exercise therapy for chronic fatigue syndrome.’ Cochrane website. October 3, 2019. Accessed on February 18, 2025, at: https://www.cochrane.org/news/cfs
4. Cochrane. Update on ‘Exercise therapy for chronic fatigue syndrome.’ Cochrane website. December 16, 2024. Accessed on February 18, 2025, at: https://www.cochrane.org/news/update-exercise-therapy-chronic-fatigue-syndrome
5. Larun L, Brurberg KG, Odgaard-Jensen J, Price JR. Exercise therapy for chronic fatigue syndrome. Cochrane Database of Systematic Reviews. 2024, Issue 12. Art. No.: CD003200. Accessed on February 18, 2025, at: https://www.cochranelibrary.com/cdsr/doi/10.1002/14651858.CD003200.pub9/full
6. Vernon SD, Zheng T, Do H, et al. Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study. Journal of General Internal Medicine. 2025. Accessed on February 18, 2025, at: https://link.springer.com/article/10.1007/s11606-024-09290-9
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| Disclosure: My academic position at the University of California, Berkeley, is largely supported by donations to the university via the campus crowdfunding platform from people with ME/CFS, Long Covid, and related disorders. |