Member-only story
M.E. Patients and the Researchers that Silence Them
A lot of things have been written recently about patients living with Myalgic Encephalomyelitis (M.E.), often erroneously known as Chronic Fatigue Syndrome. Last week, Reuters published a long-form piece focused on psychiatrists working in the field, who claimed online activists were silencing their work.
Reuters quotes Professor Michael Sharpe, one of the authors of the controversial PACE trial, which was this year debated in Parliament, and is responsible for the current NICE guidelines that recommend Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) to patients.
“It’s just too toxic [a field],” he says, and Reuters adds their own context to the conversation, writing: ‘For many scientists, [this is] a new normal: From climate change to vaccines, activism and science are fighting it out online.’
As an M.E. patient and campaigner, the only things I felt reading those words were sadness and frustration. In my former life, before sickness struck, I trained and worked as a journalist, and the lack of research involved in framing severely ill patients as anti-science makes my heart ache; both for my former profession, and for the millions of patients given no right of reply.
