The Effect of CBT, GET and Pacing Treatments on ME/CFS Symptoms: Analysis of a Patient Survey compared against Secondary Surveys

Problem

Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) severely impacts the quality of life of sufferers. Most ME/CFS patients will be managed in primary care. Cognitive behavioural therapy (CBT) and graded exercise therapy (GET) are the only evidence-based treatments recommended for ME/CFS. In contrast, patients anecdotally report that CBT and GET deliver little benefit, in comparison to pacing or pacing therapy (PT). Our study explores patients’ symptom and illness changes in response to these treatments. We analyse results from a large patient survey (n=1,428) and compare findings against other comparable surveys (n=16,665).

Approach

Using ordered logistic regression, we first modelled the direct effect of course approach on change in symptoms (post-course); second, we considered the effects of course composition after adjusting for demographic, condition-specific and course-specific variables. We also explored the effect that these variables had on change in symptoms. Finally, we compared our results against findings from other patient surveys that report symptom changes following CBT, GET and PT (2000-2015).

Findings

Only 8% of patients who underwent CBT report improvement (92% no benefit). Only 12% following GET improve, while 74% report worsening (14% unchanged). In comparison, 44% report improving following PT with only 14% worsening (41% unchanged). Adding GET to any other treatment worsens outcomes, whereas adding PT improves outcomes. Analysis of secondary survey evidence show CBT being beneficial for 35% of patients (17% worse/48% unchanged), GET has a negative impact for 54% of patients (28% benefit/17% unchanged), whereas 82% of patients following PT report improvement in symptoms (4% worse/14% unchanged). The pattern appears to be consistent for the high negative impact of GET and the low negative/high positive impact of PT.

Consequences

Our results suggest that CBT and GET are of limited benefit in terms of helping ME/CFS patients improve symptoms. The majority of patients experience no benefit. In contrast, pacing brings about the greatest positive impact with the least negative reactions. GET brings about a substantive deterioration in symptoms for around half of patients and it is the least favoured treatment approach, compared with pacing, which is most favoured by patients. Adding GET in combination with other treatments worsens outcomes and contributes to increases in illness severity, whereas adding pacing in combination improves outcomes. These findings conflict with NICE guidelines and some randomised controlled trials that report CBT and GET to be superior treatments, but are consistent with findings from multiple patient surveys that span fifteen years and multiple countries. Therapists’ views have an impact on patient outcomes, with views of ME/CFS being a physical illness associated with better outcomes than views of ME/CFS being psychological illness. All three treatment approaches have little impact on disability status. Further research is needed to better understand the role of pacing in ME/CFS and potential adverse responses to CBT and GET.