PUBLIC HEALTH ENGLAND - Health Protection Report
'Multidisciplinary group to develop new UK Lyme disease guidance (page 4 here )
Specialists based at PHE's Rare and Imported Pathogens Laboratory (RIPL), Porton Down, are to coordinate the
development of new UK guidance on the diagnosis and treatment of cases of Lyme disease, the tick-borne
infection of which there are approximately one thousand laboratory-confirmed cases recorded annually in England
and Wales but whose true prevalence is uncertain because of the difficulties associated with diagnosis and the
non-specific nature of symptoms associated with chronic sequelae of the disease.
This was announced at the end of the PHE's first Lyme disease conference held in London on October 9 . The
meeting was addressed by experts from RIPL, by clinicians from Wales and Scotland, and by patient organisations.
National surveillance of Lyme disease in England and Wales began in 1986, since when officially-recorded
incidence has increased five-fold; the true level of infections is estimated to be two to three times higher than the
confirmed cases. The disease is named after a US location where a cluster of cases among children was
investigated in 1975.
Because risk of infection is mainly associated with outdoor recreational activity in tick-infested areas of dense
vegetation, precautionary advice for the public is routinely issued at springtime  while recommendations on
diagnosis and treatment for health professionals, including for GPs, including references to statements of best
practice, have been regularly updated on the legacy HPA website .
Although geographical factors are significant in determining the manifestation of Lyme disease, no official,
nationally-agreed guidance has been developed specifically for UK conditions. A multidisciplinary group is therefore
to be convened to develop national guidance on diagnosis, investigation and treatment, including treatment of
complex cases, Tim Brooks, clinical service director of RIPL, told the conference. Representatives of all medical
specialties that see cases at different stages of the disease's progression, including GPs, infectious disease
specialists, microbiologists and neurologists, as well as patient groups, would be involved in the guidance
The Countess of Mar, who opened and closed the meeting, applauded the PHE's willingness to involve patient
groups in the guidance development. Many patients experiencing “medically unexplained physical symptoms”, as
often occurred prior to a Lyme disease diagnosis, resorted to alternative therapies in the meantime, in order to
manage their condition. The benefit of the experience of patient support groups would contribute to the resolution
of uncertainties that remain about Lyme: in particular, relating to the effectiveness of diagnosis methods, and to
differences of opinion about the usefulness of long-term antibiotic treatment, Lady Mar said. It was also in line with
the Chief Medical Officer's support for the concept for the “expert patient”.
Brooks said guidance development was a long-term project in which patient group involvement was important. He
hoped the guidance would encompass differential diagnosis and include recommendations, in the form of
algorithms, on routes that health professionals should take when testing for and diagnosing the disease, on
treatment of suspected cases, and on investigation pathways to be followed for cases shown to be Lyme-negative.
1. Lyme disease conference, London, 9 October 2013. See “Conference wrap-up: Lyme disease”, Public Health
Matters [Health Protection Directorate post], 15 October 2013, https://publichealthmatters.blog.gov.uk/category/hp/.
2. “Lyme disease update and seasonal tick-bite reminder”, HPR 7(20), 17 May 2013.
3. Legacy HPA website: Infectious diseases › Infections A-Z › Lyme borreliosis/disease › Guidelines/.
Further information can be found here