Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) remains a poorly diagnosed yet debilitating condition. The Handbook of Non-Drug Interventions (HANDI) aims to make evidence-based non-drug interventions accessible and easier for clinicians to use where appropriate.
HANDI’s development and review processes are detailed on the website:1 best evidence is reviewed and summarised, and tips are provided for implementation by a multidisciplinary editorial committee with a wealth of clinical and epidemiology experience. HANDI is not a guideline as it does not compare the treatments in entries to other treatment options, nor make recommendations. Hence assessment using the AGREE II instrument is inappropriate. HANDI interventions are graded using the National Health and Medical Research Council (NHMRC) standards, or the GRADE (Grading of Recommendations Assessment, Development, and Evaluation) process for quality of evidence (not strength of recommendation).
Clinicians should note that some patient support groups have rejected the evidence of benefit from appropriately graded exercise, which has fractured the healthcare for CFS/ME, pre-dating the significant PACE trial 2008.2 Debate on methodological quality of the PACE trial is addressed in The Lancet.3 Several randomised controlled trials (RCTs) examining graded exercise for CFS/ME are provided in the supportive Cochrane review.4 While Cochrane reviewers (2019) do account for study limitations, there is still moderate-strength GRADE evidence, for some patients, for a benefit of graded exercise over passive control groups or usual care with fatigue as the primary outcome.
For CFS/ME, all the studies reviewed by the HANDI editorial committee (and Cochrane review) are RCTs or systematic reviews of RCTs. The evidence offered for harm from exercise is from surveys at high risk of bias. Clinicians should be aware that some patients with CFS/ME cannot tolerate graded activity, but some may have been poorly guided in correct exercise implementation, triggering exacerbation of symptoms. HANDI provides some detail about the importance of patient selection and correct implementation.
HANDI recognises the underlying pathophysiology of CFS/ME is not known, and there are few proven treatment options. Current evidence supports appropriately graded incremental physical activity to manage symptoms.
The 2023 NICE guideline retraction was highly controversial and not aligned with research evidence, resulting in members of its writing group resigning. Details of the aberrant interpretation of evidence are outlined elsewhere.5,6