Vector-Borne Infection Research-Analysis-Strategy
November 2017

Analysis of the NICE Lyme disease draft Guideline 'Research Recommendations'

Recommendation #2

The NICE draft guideline for Lyme disease states:

2/ Clinical epidemiology of Lyme disease in the UK
What are the incidence, presenting features, management and outcome of Lyme disease, including in women with Lyme disease who are pregnant, in the UK?

Why this is important
There is a lack of robust epidemiological data on Lyme disease in the UK, particularly in people who are immunocompromised or pregnant. A large clinico- epidemiological study to collect data on incidence, presenting clinical features, management and outcome of Lyme disease in community and hospital settings in the UK would generate population-based statistics. These statistics would enable interventions such as antibiotic treatment and service improvements to be assessed properly, and for services to be tailored so they best serve people with Lyme disease; this was felt to be of high priority. There is no current requirement to notify cases of Lyme disease, therefore, current data are likely to under-estimate the number of people who are seen and treated in the community without serological testing. The morbidity of those who are not rapidly diagnosed and those who seek and receive non-standardised care outside the NHS would justify the costs of this large study.

Identifying the 'incidence' of Lyme disease is not a 'high priority' for research in the UK. Credible data would be interesting, but is not in fact, any more urgent now, than it has been for the past 3 decades during which time the UK authorities have largely ignored the threat of a Lyme disease epidemic. Neighbouring countries with up to 170 times higher incidence than England and Wales do not have 'robust epidemiological data'. Neither do the USA, where the Centres for Disease Control and Prevention (CDC) admit that their true incidence of Lyme is probably 10 to 12 times higher than the number of officially reported cases, e.g., 300,000 to 360,000 per year.

PHE have repeatedly claimed that the true incidence in England and Wales, could be two to three times higher than the officially reported figure of ~1,000 cases per year. Believing that the UK detects one-third to one-half of cases would make UK Lyme disease surveillance 3 to 6 times more efficient than that of the USA, a preposterous claim (please see the VIRAS analysis of UK incidence). The immediate need is for Public Health England to admit that Lyme disease is grossly undetected and unreported, and that this is a problem that needs addressing with routine surveillance and rational estimates, not wishful thinking and expensive research which is of low priority compared to the urgent needs of UK patients.

A genuine priority for UK research is to investigate the prevalence of chronic Lyme disease. The weak management of Lyme disease in the UK has created the illusion that it is rare and of little concern to the public or to doctors. As a result, the vast majority of cases have gone undiagnosed and untreated. So by now, the UK has tens or hundreds of thousands of patients living with chronic Lyme disease. Those who are chronically infected and symptomatic will inevitably have been misdiagnosed with something else, e.g., M.E., CFS, MS, Fibromyalgia, Parkinson's and other diseases. Many of these patients will be enduring terrible suffering and must be detected and treated as a genuine 'high priority'.

"management and outcome of Lyme disease"
Studying these is not possible without a reasonably accurate method for identifying cases. As PHE do not acknowledge any of the sophisticated tests that can help to identify true cases, including those which are negative by NHS testing, this whole recommendation is revealed to be meaningless bluster. The exercise as it is described would predictably maintain the current gross underestimation of incidence and ignores prevalence altogether. This may be acceptable to PHE who appear to enjoy ridiculous Lyme disease statistics but would do nothing for patients, doctors or the public.

"including in women with Lyme disease who are pregnant"
One could be forgiven for wondering why this was incongruously tagged onto the end of this recommendation. If the idea was to convince us that this issue is taken seriously, then it is a massive FAIL. Those that appreciate the possible consequences of Lyme during pregnancy will recognise that this is a priority which fully justifies it's own dedicated research. This will not be achieved by lumping it together with a load of stuff and nonsense.

The NICE draft guideline Research Recommendation #2 is ill-conceived and disingenuous. It is actually shameful.



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