The ME community protested against PACE’s oppressive bad science on 12th May. Guest post by Catherine Hale.

Shoes displayed in front of Whitehall with a group of protestors behind

Guest post by Catherine Hale

Hundreds of empty shoes represented people with ME who were too ill to protest in person on 12th May for the global #MillionsMissing campaign.

A small group of us gathered outside the Department of Health on Whitehall to demand resources for proper research and treatment for this shockingly neglected disease.

The global ME community is strong and growing. But here in the UK we really need allies outside of the ME world to help us get our voice heard.

Science and health journalism in the UK has been complicit in wrongly portraying ME as a pseudo-disease alleviated by positive thinking and exercise. Worst of all, the mainstream UK media remain silent on the scandal of PACE.

What is PACE?

PACE was large-scale trial of cognitive-behavioural treatments for ME which has been exposed as jaw-droppingly bad science but is still highly influential in the UK.

But to the ME community, PACE represents more than just bad science. It represents decades of oppression of people with ME by a self-serving professional elite.

The treatment regime for PACE includes steadily increasing exercise (known as GET). Thousands of people with ME (pwme), including me, have deteriorated and have permanently lost function following GET treatment. Some of their stories are here. Yet the evidence of iatrogenic harm has been denied or suppressed. Patients themselves have been blamed for failing to recover due to a negative mindset.

The oppression is also psychological. When your impairment is judged to be the result of your misperception of bodily reality (as the cognitive-behavioural model of ME holds) your voice is suppressed and your personal integrity is left in tatters.

As writer Toni Bernhard says, the stigma of ME lies in being seen as an unreliable witness to your own condition.

The scandal of PACE affects not just pwme but other poorly understood and under-researched conditions lumped together as psychosomatic under the umbrella of Medically Unexplained Symptoms. And the team behind PACE was involved in developing the biopsychosocial model of illness and disability underpinning many of the DWP’s welfare reforms. The ramifications of PACE can be seen in the biases in the WCA and PIP against invisible illnesses.

Here is the address I gave at #MillionsMissing about how dishonest, unethical science  continues to blight the lives of pwme and hamper progress towards understanding and treatment.

Video here: