The results of the Forward ME and Oxford Brookes University patient survey on CBT and GET in ME/CFS have been published.
2,274 people with ME/CFS of all ages responded to the online survey with their experiences of cognitive behavioural therapy and/or graded exercise therapy. 80.4% were female and 98.5% said they experience post-exertional malaise.
Conclusions from Forward ME Executive Summary:
The results show clearly that cognitive behavioural therapy and graded exercise therapy are unsuitable treatments or management approaches for ME/CFS. The changes in severity and the worsening of symptoms are clear indications that the therapies being offered are having adverse effects on the health of individuals.
CBT, while may be effective for a minority in helping with mental health challenges such as depression or anxiety, is shown to be ineffective in a considerable proportion of people and even led to almost half of respondents reporting worse symptoms.
GET is shown to cause considerable deterioration in physical and mental health. It has led to people becoming more severe and the open questions have given us insight into the worsening symptoms that have developed when patients have increased their activity beyond their capabilities.
The results show that although NICE might not recommend GET for the severely affected, they are clearly being given GET at the clinical level. This could be because clinics are not tailoring their management advice to the individual (as NICE recommends) or are simply not aware of the unsuitability of aerobic/exercise for people with ME/CFS.
Alongside this the analysis of the survey provided by Oxford Brookes University show that people with ME/CFS have experienced negative effects with regard to welfare and benefits when choosing whether or not participate in these treatments. Results also show that the adverse effects of the treatment has had a considerable impact on the employment and education capabilities of individuals.
We acknowledge that there may be some bias in the results of the survey due to the promotion of the survey being organised by ME charities rather than NHS organisations. There are also limitations in self-reported data. However, we feel the scale of the response demonstrates the strength of feeling and harm on this issue.
As there is a commitment that this new guideline be ‘patient led’ we believe that the responses should carry considerable weight in the consideration of effective treatment or management approaches. There is also an ethical question whether the current management recommendations relating to CBT and GET can continue while the development is underway when their suitability is evident.
Our collective recommendation is that GET and CBT be removed from the NICE guideline for ME/CFS.
Read more about the survey results on the ME Association website: Forward ME and Oxford Brookes University announce results of patient survey on CBT and GET in ME/CFS
ME Research UK: Forward-ME survey on patients’ experiences of CBT and GET