But whatever the reasons for PACE trial, what we do know is that it was intentionally designed to maintain the notion that ME was, in part, ‘all in people’s heads’. And that the best treatments for it were talking therapy (‘think yourself better!’) and exercise (work harder you work-shy hypochondriacs!’). It is undoubtedly a medical scandal that firmly has its roots in our political and economic systems.
Yet many people living with ME still view it as an issue of medical negligence, and nothing more.
I understand why. When you are already struggling to get medical professionals to even acknowledge your diseases, illnesses and impairments are real, the politics of why they’re not is probably the furthest thing from your mind.
But that needs to change. Because otherwise, people living with ME, and sick and chronically ill people more broadly, will be sleep-walking into a dystopian future.