In January 2019, a survey investigating the impact of graded exercise therapy (GET) and cognitive behavioural therapy (CBT) for people with ME, CFS or PVFS diagnoses in the UK was made available online. It was intended to provide up-to-date data on the impact these therapies have had on people who have been offered or received them since the 2007 NICE guidelines that recommend them were introduced.
The NICE guidelines are currently being rewritten and are due to be published in October 2020.
Statement from Forward-ME Group
We are pleased to be able to let you see the results of the recent survey conducted on behalf of Forward-ME by Professor Helen Dawes and her team at Oxford Brookes University.
Bearing in mind that this survey was organized at very short notice and that we are aware that there are some shortcomings such as a selective bias in that only people with on-line access and the ability to complete the questionnaire were included, we are very grateful to all who responded so quickly.
The results have been well received by the Chairman of the NICE Guideline Development Group and will, we hope, be helpful to the Group as they develop the new guideline for ME/CFS.
In summary, the majority of individuals reported deterioration or no change in symptoms and health over the course of all treatment approaches.
#MEAction UK have also written a shorter summary highlighting the key findings here.
We conclude that “these results clearly show that GET and CBT are not safe treatments for people with ME, CFS or PVFS. For those who received both treatments, reported outcomes are even worse. The results parallel those of previous patient surveys (Geraghty et al., 2016) and reinforce the call for GET and CBT to be suspended as treatments immediately.”