What is a Lyme ‘war’? There are a variety of different social and biological factors which threaten to bring an American style ‘Lyme war’ to Britain. Global warming, new farming methods, and changes in lifestyle activities (such as leisure) have all contributed to the rapid increase of cases of tick-borne infections (TBIs) among British people.
A considerable number of UK citizens (including those infected abroad) may be affected by ‘TBIs‘. These types of illnesses are not simple – they are caused by infections from several different Lyme bugs (strains of ‘Borrelia‘) in additional to a number of potential co-infections. They are also not exclusively ‘acute’ illnesses, much to the confusion of the established medical profession, government health departments and medicine licensing agencies.
Many of these citizens will develop chronic symptoms of Lyme disease – a serious and sometimes complex illness, with some similarities to syphilis, its nearest biological ‘relative’. The real impact of these kinds of health problems is slowly being recognised by a number of key players. For example, the London Climate Change Adaptation Strategy (August 2008) acknowledges‘the number of cases [of Lyme] in the UK is lower than in mainland Europe, despite similar densities of infected ticks. This may be due to large number of cases not being detected or reported…..it is important that adequate health surveillance is maintained so that the introduction of new infectious diseases or disease vectors is detected in a timely manner.’
Many of the people who become ill will find it extremely difficult, or sometimes impossible, to get diagnosed, or treated.They will suffer the consequences of neglect by the government’s principal agencies – the Department of Health and the Health Protection Agency (HPA – the body in charge of infectious disease surveillance and epidemiology), concerning this increasingly important area of preventative medicine and treatment. This is despite direct lobbying by Lyme groups, their doctors, MPs and carers who have asked for diagnostic and treatment protocols to be examined in a UK context. This campaign is principally led by Lyme Disease Action (1). The background issues to this debate open up a whole set of other issues about how people with chronic illness are treated, particularly those who have undiagnosed illness. The knock-on effect of this debate therefore has potentially very wide implications.
No-one knows what the true incidence of Lyme disease really is in the UK, since the government and NHS have refused to make it a ‘notifiable’ disease (with the exception of Scotland; the armed forces, and when acquired through an occupational activity). The figures provided are using a ‘voluntary system’ relying on laboratory based test results. The wide range of symptoms resulting from being infected by the two ‘European’ bugs carried by the ticks (classified as Borrelia garinii and Borrelia afzellii), include skin and arthritic problems, neurological and immune or autoimmune dysfunctions, sometimes called ’Borelliosis’ (2). These symptoms, are frequently not recognised by busy GPs, sceptical consultants, or by the patients themselves. The result is delayed diagnosis – and consequently, delayed treatment; misdiagnosis; or lack of any response from the NHS. Patients call this ’Lyme denial’ and their doctors ‘insultants’.
In the United States the situation has been controversial for a long time. Lyme disease is the fastest growing infectious disease there (HIV was the first until recently). In the UK, the HPA’s own figures show diagnosed cases of Lyme disease have more than doubled since 2000 (including a staggering 797 new cases in 2007, and 813 in 2008) in England and Wales. There are concerns that the number of (known) cases may be doubling every five years.
Many people argue these figures are a gross underestimate of the real extent of the illness. Many untreated patients will develop chronic illness, but not be measured or counted as such. They will end up ’lost’ in diagnostic categories such as ‘fibromyalgia’, ‘M.E.’ (Myalgic encephalomyelitis) or ‘multiple sclerosis‘.
The government and various ‘key agencies’ deny there are central problems that need to be resolved. The HPA and the mainstream medical profession cite guidance by the Infectious Disease Society of America (IDSA) as standard (3). This is because they have no specific guidance of their own that is unique to the UK and which reflects the kinds of health problems encountered by people in the UK. It is assumed there is only one standard – a ‘one-size-fits-all’ approach. The National Institute for Clinical Excellence (NICE), for example, does not have a set of specific guidelines for tick-borne diseases.
The European vs American response to Lyme disease The biological, social and medical issues in the diagnosis and treatment of Lyme disease are undoubtedly complex, and there are many research questions that have just not been fully investigated yet. Several issues have become controversial including the*Accuracy of tests; *Impact of different treatment regimes and clinical history; *Impact of multiple infections; *Access to treatment on the NHS and misdiagnosis; *Disappearance of patients into different specialities; *Adequate preventive measures; *Persistence of the Lyme infection; *Neglect of basic scientific findings.
The UK government response is to refer back to the IDSA guide, thereby avoiding these issues – rather than finding a distinctly British solution. The HPA suggest that that the European Community Working Group on Lyme disease, E.U.C.A.L.B (European Concerted Action on Lyme Borreliosis) and many European countries have the same guidelines. Patients are frequently referred to the latest NICE guidance on M.E and are denied testing, or treatment, for Lyme disease (5).
A deeper investigation into the connections between European and American policy is revealing. The problem is that the IDSA guidance has only recently been legally challenged. Following an investigation by the Connecticut State Attorney General into their guidelines, IDSA has agreed to review their own Lyme treatment guidelines (without the original people being on the panel) (3). This is because, by legal criteria, the process excluded competing points of view and failed to check for (and reveal) conflicts of interest. IDSA promoted another medical association’s guidelines as corroborating its own, when in fact the two panels shared several members. It was not an inclusive process. Many of the members of the International Lyme and Associated Diseases Society (ILADS) (4) were excluded for the panel leading the review, which took place in July 2009. IDSA and ILADS have rival policy positions in America, however its the IDSA guidance that dominates treatment protocols and practice, across the western world.
The report from this review was due to be presented by the beginning of 2010. All the documents of evidence and videos of the proceedings have been put in the public domain on the IDSA site (3). This openness has enabled detailed and extensive debate, and the different range of evidence relating to the origianal guidance. This would not have taken place had the legal process, instigated by a legal figure, had not happened. There is widespread scepticism, however, that the guide will be changed to help people with chronic Lyme.
An email from EUCALB points out that, strictly speaking, there are as yet ‘no internationally agreed treatment protocols’, and that the guidelines vary for different European countries. They also point out that their (EUCALB’S) guidelines were based on the IDSA guidelines, in the first place. These IDSA guidelines are being re-visited and possibly re-written. It was, quite simply, the same small set of people, writing the same sets of guidelines, with the power to influence another organisation’s policies. The UK government’s response is, at the very least, evasive – claiming that the IDSA guide is‘influential but, as with other medical guidelines, they are not binding on clinicians…..the under agreement the guidelines remain in effect….the view of the HPA is that the IDSA guidelines continue to represent the best available synthesis of the medical literature on the diagnosis and treatment of Lyme disease, and they are in keeping with European expert recommendations…’ (1)
It is just not clear why the UK government uses this guidance. It is also not clear why the NHS uses guidance that is ‘not binding’ while withdrawing or denying treatment options.
The uncertain status of the IDSA guide is NOT the only key issue for the UK. There are important doubts whether any guide from the United States is really relevant to the UK, given the differences in bacterial strains present here. We need UK-orientated policy research and UK-specific guidelines, based as far as possible on UK strains of Lyme infection and the epidemiological patterns demonstrated here.
Patients and their experiences The HPA has in fact estimated in the past that there could be up to 3,000 new patients per year with this illness in England and Wales alone. Many of them turn to the national charity Lyme Disease Action (LDA) (1) for advice on how to cope. An associated email group received more than 80,000 messages since it was set up in 2001, and the numbers of new members are growing rapidly.
The LDA recently held an e-petition to ask the government to make ‘Lyme disease’ a notifiable disease, so that at least the numbers would reflect true levels of diagnosis. But this request was denied. The net results of the lack of response from government leaves both patients and their GPs (well meaning or not) out in the cold. It is not clear what action, if any, the government or health agencies are planning. The latest (newest) e-petition to No 10 Downing Street, which gathered a total of over 2,000 signatures, led to a disinterested response: the government did not consider it necessary to develop guidelines for the treatment of tick-borne disease for, and in, the UK.
There are limitless social, financial, and medical problems resulting from misdiagnosis and the failure to deliver effective early treatment. For example, the numbers of people with ’generic’ diagnoses such as M.E is high, and growing every year. It is unclear how many of these people may actually be suffering from chronic Lyme disease. The knock-on effects to families, employers, communities and the overall social costs of poor diagnosis are high. This is currently unmeasured, but not unmeasurable. All this provides the conditions for an American-style ‘Lyme War’. However, people enduring these problems in the UK do not need this; what they need is some clear, solid evidence – and swift policy solutions.
Kate Bloor (BSc Human Sciences, MSc Sociology of Health and Illness, MSc Science and Technology Policy) is a researcher and lyme patient. She was assisted in the production of this article by a member of a Lyme organisation, and a professional editor.
(1) Lyme Disease Action, LDA (http://www.Lymediseaseaction.org.uk/) (2) ‘Borreliosis and Associated Diseases Awareness’ – BADA – UK – a charity dedicated to education on the dangers of ticks infection with tick borne infection) detailing experiences of some Lyme patients (http://www.bada-uk.org/). Video by BADA (http://www.dailymotion.com/frontiershowcase/video/x6f2is_onetick-). (3) Infectious Disease Society of America – IDSA guide (http://www.idsociety.org/) (4) International Lyme and Associated Diseases Society (ILADS) – http://www.ilads.org/ (5) ‘The European Union Concerted Action on Lyme Borreliosis‘ – EUCALB (http://meduni09.edis.at/eucalb/cms/index.php?lang=en)