We respond to Saunders and Tack’s comments on our recent review.1

Saunders point out that NICE (the UK clinical guideline organisation) downgraded its recommendations for cognitive behaviour therapy (CBT) and graded exercise therapy (GET) in its recently revised guideline. However, these recommendations have been strongly disputed. Three clinicians resigned from the NICE guideline committee before publication and four UK Royal Colleges of Medicine disagreed with NICE saying: “These [GET programmes] have provided benefit to many patients and should not be discontinued. …CBT remains a valuable treatment for alleviating symptoms in ME/CFS… ”. They also said “There is considerable disquiet in the medical profession and some patient groups about the way the data and evidence have been assessed”. A commentary published in the Lancet journal was equally critical, stating that “In our view, this guideline denies patients treatments that could help them.”2 In summary, although we acknowledge that there are those who agree with the new guidelines, many experts believe that NICE was wrong to downgrade the strength of their recommendations for these treatments.

Tack is concerned about the use of patient-reported outcome measures (PROMS) in trials of CBT and GET for patients with CFS/ME. On the contrary, we think that PROMS are essential for illnesses that are defined entirely by patient report. Furthermore, any response bias from the use of such measures has been reported to be minimal.3

Tack acknowledges that the PACE trial found that patient expectations had no obvious role in determining outcomes, but suggests that therapists’ encouragement during treatment may have influenced how patients rated their outcomes. We think this is unlikely since most participants in all therapy arms were satisfied with their therapy (85% APT, 82% CBT, 88% with GET). Therapeutic alliance was also equally strong in all three therapies.

Whilst Tack argues that the improvements from these therapies were not maintained as described in our peer-reviewed publication, we disagree with this interpretation of the data.4 Evidence from a recent meta-analysis suggests that properly delivered GET is also safe.5

Replication is key to trusting research findings. The findings have been replicated in different settings in different countries by independent researchers.1 In conclusion, though there is a diversity of opinion on the topic, evidence from gold standard randomised controlled trials and systematic reviews suggest that the rehabilitative treatments of CBT and GET are effective and safe for CFS/ME.1