As part of our ongoing work with ME, yesterday was a significant day with Carol Monaghan MP securing a Westminster Hall debate on ‘PACE trial: People with ME’.

It's been almost a decade since Myalgic Encephalomyelitis (ME) has been debated in the Commons. Yesterday gave renewed hope to the 250,000 people in the UK estimated to suffer from the illness.

Sarah Reed said:

The PACE trial claimed that exercise can improve people with ME through graded exercise therapy (GET) and cognitive behaviour therapy, forming a pervasive perception of ME as a psychological disease in the UK and throughout the world.” (PACE is short for Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation).

The PACE trial has attracted international criticism. The results contradict patients lived experience, a FOI request resulted  in Queen Mary University London spending £200,000 to prevent the release of the data but was eventually overruled at tribunal. Re-analysis showed that the improvement rate fell from 60% to 21% and the recovery rate fell from 22% to just 7%.

The perception that patients just need to exercise themselves to recovery has had a disastrous effect on patients ability to access the medical and financial help they need and hindered development of much needed biomedical research. It has also perpetuated the myth that ME is psychological illness in the public eye.

Monaghan stated:

When the full details of the trial become known this will become known as one of the biggest medical scandals of the 21st century.

The debate was well attended by MP’s and support is growing for people who have been “easy for society to ignore”

The half hour debate has been an important foot in the door for change and Sarah is already working to make sure that a larger debate will follow. She is also representing #MEAction on the Forward ME group, an umbrella group of ME charities, led by the Countess of Mar.

The half hour PACE trial debate can be read in full here or watched here

A summary and further details can be found at #MEAction