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Neuropsychiatry
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NICE guideline on ME/CFS: robust advice based on a thorough review of the evidence
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  • Published on: 23 October 2024
    The revised NICE ME/CFS guideline: neither "robust" nor "thorough”
    • Paul Garner, Professor emeritus (evidence synthesis) Liverpool School of Tropical Medicine
    • Other Contributors:
      • Trudie Chalder, Professor of Cognitive Behavioural Psychotherapy
      • MIchael Sharpe, Oxford Emeritus Professor of Psychological Medicine
      • Jon Stone, Consultant Neurologist and Honorary Professor of Neurology
      • Alan Carson, Consultant Neuropsychiatrist and Honorary Professor
      • Simon Wessely, Professor of Psychological Medicine
      • Peter White, Professor emeritus of Psychological Medicine

    People with ME/CFS have a serious condition with high symptom burden and impaired function. They deserve guidelines that favour good care and effective treatment supported by the best research evidence of efficacy and safety. Unfortunately, that is not what 2021 NICE guidelines have achieved.

    The 2007 NICE guidance recommended cognitive behaviour therapy (CBT) and graded exercise therapy (GET) “…as these interventions show clearest evidence of benefit.”(1) In spite of the strengthening of the evidence supporting these two treatments, the new 2021 guidance restricted the use of CBT to helping patients cope with illness related distress, and recommended that GET should not be used at all.(2)
    In response, 51 international clinicians and academics joined together to offer an alternative perspective, being particularly critical of the methods used to produce the guideline. (3)

    In response NICE advisors and staff have rejected this argument and have referred to the process as “robust” and “thorough”. (4) We are not convinced. We do not have space here to address every error but simply outline some of the most major areas of disagreement.

    Defining ME/CFS
    ----------------------
    Barry and colleagues state they appraised criteria to diagnose ME/CFS with the AGREE II instrument. This is a misuse of AGREE II, which is a tool to assess the robustness of procedures for developing guidelines: this is not a tool that can be used to examine the criter...

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    Conflict of Interest:
    PG is chair of the COFFI Consumer Advisory Committee (unpaid).
    TC is part-funded by the National Institute for Health Research (NIHR) Biomedical Research Centre at South London and Maudsley NHS Foundation Trust, King's College London. TC was co-investigator of several trials of behavioural interventions for CFS/ME, including the PACE trial, has received royalties for several books and book chapters on CFS/ME and received payments for workshops on CBT for CFS/ME. She is the Director of the Persistent Physical Symptoms Research and Treatment Service within the South London and Maudsley NHS Trust, where some patients with CFS/ME are treated. She is on the scientific committee of the British Association of Behavioural and Cognitive Psychotherapy and was part of the Expert Advisory Panel for Covid-19 Rapid Guidelines.
    MS was a co-principal investigator for the PACE trial and has led a trial of CBT for CFS/ME. He is current President of the European Association of Psychosomatic Medicine Current (unpaid) and was the previous President of the Academy of Consultation Liaison Psychiatry (unpaid).
    JS reports grants from Scottish Government and NIHR, royalties from UptoDate, personal fees from expert witness work, Secretary FND Society, Medical Advisor FND Hope, Medical Advisor FND Action, running a self-help website for patients with FND.
    AJC reports grants from NIHR (Treatment for PPPD) and CSO (Long Covid Cognitive phenotyping). AJC is a paid associate editor of JNNP and unpaid past president of the Functional Neurological Disorders Society (FNDS), he gives expert testimony in court on a range of neuropsychiatric topics on a 50% claimant 50%: defender basis. He is the author of a self-help book based on CBT principles for treatment of FND (no royalties taken).
    SW is a Non Executive Director of NHS England. SW reports honoraria from two talks on psychological impacts of COVID to Swiss Re during the pandemic, but neither covered CFS nor Long Covid. He is on the Board of the ESRC and am also a member of the Judicial Appointments Commission for which he receives renumeration. None are relevant to this paper. SW is also on the Board of the South London and Maudsley Foundation NHS Trust for which he receives no renumeration. SW reports receiving grants to research CFS and has published over 150 papers on this subject, including being an author on several RCTs relevant to this submission, but none within the last 36 months.
    PW was a co-author of trials of both graded exercise therapy and cognitive behaviour therapy, including the PACE trial, is a trustee of the Voluntary Hospital of St Bartholomew’s Charity, was a recent member of Independent Medical Experts Group, which advises the UK MoD on its Armed Forces Compensation Scheme.