On Friday 22nd November, a patient representative from Lyme Resource Centre attended a meeting in Liverpool hosted by the National Institute for Health Research and involving Public Health England, Liverpool University Institute of Infection and Global Health, and Liverpool School of Tropical Medicine. It also included sessions lead by representatives of the Scottish Lyme Disease and Tick-borne Infections Reference Laboratory (SLDTRL) based at Raigmore Hospital and the Health Protection Scotland Lyme Disease sub-group.
Patient representatives spoke on their top 5 priorities for research. Lyme Resource Centre priorities are: identify all pathogens in ticks in Scotland, identify all tick-borne pathogens affecting humans, understand the impact of polymicrobial illnesses, research treatments for persistent infections, and research non-pharmaceutical interventions to support recovery.
We also submitted a poster highlighting the extent of pathogens in animals in Scotland and the fact we have no ISO accredited testing for either babesia or bartonella at the two main UK labs and no ISO accredited testing for any co-infections at SLDTRL in Raigmore Hospital.
The outcome of the meeting was that they want to run a research programme to identify tick-borne pathogens in the UK, understand the incidence in humans, improve Lyme testing (including evaluating T-cell tests), develop a set of core outcomes for future treatment research, and then research treatments (excluding long-term antibiotics). Funding will need to be applied for.
Having consulted patient groups on our top 5 priorities, they promised to consider those in the research programme.
Their report on the workshop is available at http://www.hpruezi.nihr.ac.uk/about-us/news-and-events/lyme-and-tick-borne-disease-research-in-the-uk/