Introduction

There is a growing crisis around Lyme disease in the UK and beyond, often referred to as ‘the Lyme wars’ (Stricker and Lautin, 2005). It is a condition caused by a tick bite that can pass on a spirochete infection (first identified pathogenically in 1983) and is now increasingly common in the UK (Dubrey et al, 2014). Patients have argued that infected ticks exist in all areas of the UK, including ordinary microenvironments such as gardens or parks.

Symptom sets for this condition are highly contested. They can include rashes and flu-like symptoms and also swelling of the joints and neurological problems, including those affecting the heart and other organs (Dubrey et al, 2014). Chronic and complex forms (untreated or unsuccessfully treated) are particularly problematical (Sigal and Hassett, 2002; Stricker and Johnson, 2010), given that Lyme has been considered a systemic illness.

This situation has been highlighted and challenged by a vocal patients’ movement since the mid-1980s. These patients are often denied testing and/or diagnosis and treatment and believe they are not fully recognised by statutory agents. Many international groups have claimed that Lyme disease was being described as an acute (that is, not potentially chronic) condition, easily spotted and treated – and even self-limiting when not treated (Tonks, 2007). This kind of perspective has been increasingly disputed and challenged. Responses among different professional groups to the official standard guidelines varied, particularly in America (for example, between the Infectious Diseases Society of America and the International Lyme Disease Society; Birnbaum, 2014).

Many groups and organisations in the UK considered institutional responses to Lyme disease inadequate. Clinicians here have been heavily criticised for either ‘under- or over-’ diagnosing people with this condition. Furthermore, international networks for patients have argued that these systemic problems stemmed from entrenched professional and policy positions, with key scientific evidence being ignored, or interpreted expediently (Stricker and Johnson, 2010; Tonks, 2007).

This case study tells the story of how communities concerned about Lyme disease in the UK became empowered within this process, gaining scientific and other knowledge and expertise to challenge current practice, and how patients’ experiences of Lyme disease contributed. I later focus on one specific issue: tick bite to human infection transmission times.

Lyme disease activism

Influenced by Radical Statistics early in my career, my understanding of the social production and politicised nature of evidence developed.