Who defines medical research policy? Patients, politics and the case of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis
University of Manchester
Tuesday 30th April 2013
1 p.m. – 2 p.m.
Simon Building Room 2.57
In recent years historians and sociologists have examined the role of patients and activists in the politics of healthcare. The patient movement has its origins in the 1960s and 1970s, a period that has seen a Western culture increasingly critical of scientists, practitioners and experts more generally. Both in Britain and the United States ‘patient choice’ and ‘consumer demand’ have come to inform the policies of successive governments. Examining the response of the British Medical Research Council (MRC) to patients with Chronic Fatigue Syndrome (CFS) (also known as Myalgic Encephalomyelitis (ME)) this paper explores the impact of these changing cultures on MRC policy. As will be shown, the qualities that enabled the CFS/ME movement to achieve institutional change (access to the political and scientific sphere, a supportive media, and a wide socioeconomic demographic) suggest that while the patient movement has empowered some, it has presented barriers to others. Offering a uniquely British perspective, this paper seeks to move the activist narrative beyond the United States. In doing so it contrasts George Pickering’s vision of the MRC fifty years ago “as a source of independent opinion in which both Government and the public can have confidence” with one today which is increasingly under pressure from a more cynical, powerful and educated public.