Major Report on CBT/GET Highlights Issues - Recommends Changes

Evidence from patient surveys reporting experiences of the three main therapeutic approaches to management of ME/CFS have produced results that differ significantly to that promoted by some healthcare practitioners and claimed by the published research evidence.

In 2012 we decided that a new and more detailed patient survey was required that would go further than previous surveys and seek to explain the factors that might contribute to patient-reported outcomes.

When large numbers of patients consistently report that currently employed management approaches are not as acceptable, effective, or as safe as has been claimed they ought to be, then we see it as our responsibility to investigate these reports, try to substantiate them, and then lobby for change in respect of clinical recommendations.

We hope that this new evidence might persuade the National Institute for Health and Care Excellence (NICE) to improve the current clinical guideline on ME/CFS (CG53), and also provide clearer guidance to NHS specialist services and private health practitioners on ways in which illness management advice can be made more suitable for all those affected by this disease – thus leading to improved patient-reported outcomes.

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