Anomalies in the review process and interpretation of the evidence in the NICE guideline for chronic fatigue syndrome and myalgic encephalomyelitis

Peter White, Susan Abbey, Brian Angus, Harriet A Ball, Dedra S Buchwald, Christine Burness, Alan J Carson, Trudie Chalder*, Daniel J Clauw, Jan Coebergh, Anthony S David, Barbara A Dworetzky, Mark J Edwards, Alberto J Espay, John Etherington, Per Fink, Signe Flottorp, Béatrice Garcin, Paul Garner, Paul GlasziouWillie Hamilton, Peter Henningsen, Ingrid Hoeritzauer, Mujtaba Husain, Anne-Catherine M L Huys, Hans Knoop, Kurt Kroenke, Alexander Lehn, James L Levenson, Paul Little, Andrew Lloyd, Ira Madan, Jos W M van der Meer, Alastair Miller, Maurice Murphy, Irwin Nazareth, David L Perez, Wendy Phillips, Markus Reuber, Winfried Rief, Alastair Santhouse, Tereza Serranova, Michael Sharpe, Biba Stanton, Donna E Stewart, Jon Stone, Michele Tinazzi, Derick T Wade, Simon C Wessely, Vegard Wyller, Adam Zeman

*Corresponding author for this work

Research output: Contribution to journalReview articleResearchpeer-review

6 Citations (Scopus)

Abstract

Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a disabling long-term condition of unknown cause. The National Institute for Health and Care Excellence (NICE) published a guideline in 2021 that highlighted the seriousness of the condition, but also recommended that graded exercise therapy (GET) should not be used and cognitive-behavioural therapy should only be used to manage symptoms and reduce distress, not to aid recovery. This U-turn in recommendations from the previous 2007 guideline is controversial.We suggest that the controversy stems from anomalies in both processing and interpretation of the evidence by the NICE committee. The committee: (1) created a new definition of CFS/ME, which 'downgraded' the certainty of trial evidence; (2) omitted data from standard trial end points used to assess efficacy; (3) discounted trial data when assessing treatment harm in favour of lower quality surveys and qualitative studies; (4) minimised the importance of fatigue as an outcome; (5) did not use accepted practices to synthesise trial evidence adequately using GRADE (Grading of Recommendations, Assessment, Development and Evaluations trial evidence); (6) interpreted GET as mandating fixed increments of change when trials defined it as collaborative, negotiated and symptom dependent; (7) deviated from NICE recommendations of rehabilitation for related conditions, such as chronic primary pain and (8) recommended an energy management approach in the absence of supportive research evidence.We conclude that the dissonance between this and the previous guideline was the result of deviating from usual scientific standards of the NICE process. The consequences of this are that patients may be denied helpful treatments and therefore risk persistent ill health and disability.

Original languageEnglish
Article numberjnnp-2022-330463
JournalJournal of Neurology, Neurosurgery and Psychiatry
Early online date10 Jul 2023
DOIs
Publication statusE-pub ahead of print - 10 Jul 2023

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