Research relating to Lyme disease and other tick-borne infections in the UK has gained momentum in recent years. Government resources have been focused on spreading awareness, learning more about ticks, where they are found and the pathogens they carry, as well as understanding who may be at increased risk of tick-borne disease.
In 2018 NICE clarified urgent recommendations for research to help bring better understanding and ultimately improvements in medical care. We have recently reviewed steps taken by UK researchers towards fulfilling these goals (somewhat delayed due to the pandemic) following the recommendations. Areas of research identified as priorities by NICE are listed below.
Core outcome set for studies on Lyme disease
Development of a core outcome set is underway and ongoing, and has been funded by Lyme Disease Action, to whom we are very grateful. The work is co-ordinated and led by the University of Liverpool and the COMET Initiative together with an international steering committee of health professionals and patients. A core outcome set allows comparison across trials and appropriate meta-analysis to strengthen results.
Watch this video to learn more about core outcome sets.
Clinical epidemiology of Lyme disease in the UK (incidence, presenting features, management and outcomes)
Population-based statistics enable interventions such as treatments and service improvements to be properly assessed and tailored to best serve Lyme patients.
A new population-based cohort study on the incidence, treatment and natural history of Lyme disease in the UK was approved earlier this year. NHS GP patient data from 2000-2004 will be studied to better understand how common the disease is, symptoms experienced before and after first coded diagnosis, and long-term effects of the disease. This information will be used to further educate medical professionals and hopefully help enable swifter diagnosis and treatment.
The Lyme-UK Study is ongoing and now extended to better track treatment outcomes over a year in patients with suspected Lyme disease who are treated by their GP with antibiotics. Patient samples (skin biopsy, serum, blood and urine) are being added to a bio-bank to support future UK research.
Seroprevalence of Lyme disease-specific antibodies and other tick-borne infections in the UK
Available data showed areas of higher and lower prevalence of Lyme disease in the UK but there were many gaps in knowledge. There is also insufficient data on co-infections transmitted by ticks (thought to be rare in the UK in comparison to other parts of the world). Updated information will act as a basis for future studies and help determine if these infections are spreading and becoming more common. Improved evidence will help improve diagnostic and treatment decisions.
A nationwide cross-sectional Lyme seroprevalence study assessed 9,994 NHS blood donor plasma samples (age 17 – 84, collected between 2021 – 2022 in England) using standard two-tiered testing (included indeterminate results). 482 were ELISA reactive but after two-tier testing only 49 or 0.49 % (95 % CI 0.36 – 0.65) were confirmed positive. The result was lower than in Scotland and other European countries. Read the discussion section of the study to learn more about the study’s limitations. A second cross-sectional seroprevalence study assessed healthy volunteers recruited prospectively, to help identify occupational/recreational risk factors for tick-borne disease exposure.
To help track cases, borrelia and several other tick-borne organisms are reported by testing laboratories to the UKHSA as notifiable causative agents. Tick-Borne Encephalitis Virus (TBEV) is considered a notifiable disease and will be added to the Government’s website when it is updated. Read our information about other tick-borne infections endemic in the UK.
1581 laboratory-confirmed cases of Lyme disease were reported in 2024 but this does not reflect the true burden of acute Lyme disease in England. The true incidence of cases remains unknown and different estimates vary. Cases presenting with an erythema migrans rash are diagnosed clinically and testing is not required, as per the NICE guideline. Others infected but without a rash may remain misdiagnosed or undiagnosed.
Laboratory tests to diagnose all stages of Lyme disease, and optimal antimicrobial treatment options
Naturally these areas of research recommended by NICE are of the greatest importance to patients and doctors. There has been a surge in international projects attempting to make headway and it’s encouraging to see increasing interest within the UK’s research community.
Following recommendations from NICE, the UK Government has stated that research proposals related to Lyme disease and Lyme diagnostics are welcome. In 2021 Caudwell LymeCo Charity funded research to pilot a new Lyme disease test using immuno-PCR technology (iPCR), a method combining pathogen protein detection with DNA amplification.
It was hoped that this test would help improve screening by detecting six Borrelia burgdorferi antigens that span early and late infection. Unfortunately the research did not lead to success but we greatly appreciate the work and knowledge achieved.
Since the pandemic there has been increased focus and research into understanding similarities between Covid-19, ME/CFS and Post-Treatment Lyme Disease. Research efforts into developing a reliable test for ME/CFS have intensified with some success. If a truly reliable test becomes readily available relatively quickly this may ultimately lead to greater clarity for those trying to distinguish between ME/CFS and antibody negative cases of Lyme disease.
Professor Karl Morten and colleagues at The University of Oxford have been researching post infection associated chronic conditions and making headway through a number of projects. Working with Professor Jack Lambert (University College Dublin), the team are exploring shotgun meta-genomic sequencing and new culture approaches to identify pathogens in the blood of Lyme patients. In addition there is work on establishing the impact of longer-term antibiotic treatment. Success could help the team to compete for grant funding for larger clinical studies in the future.
A primary objective of this research project at Oxford is to confirm when a reduction in pathogens links to a reduction in symptoms. Borrelia L-Form ‘persisters’ lack a cell wall making them resistant to some of the antibiotics currently used in Lyme disease treatment. The organism’s ability to change shape and survive is one reason the disease can be so difficult to treat. The team’s focus on growing L-Form cultures from the blood of late-stage Lyme patients would clarify the presence of continuing infection. Their work to test a panel of antibiotics will undoubtedly be of great interest.
Professor Lambert was also part of a team who previously conducted a longitudinal study of patients treated with combination antibiotics for Lyme disease and co-infections in Ireland.
In addition a prospective study to evaluate the role of T-cell dysfunction in 160 patients with long COVID, Lyme disease and ME/CFS using the Vira Immune Fluorospot T Cell Assay has been advertised by the NIHR and is underway in Scotland (sponsored by ViraxBio Labs).
Other projects:
The need to assess the treatment of suspected Lyme disease patients in primary care was clear so a GP knowledge, attitude and practice survey was conducted from 2022 to 2023. The study proved a marked need for improvement, particularly in primary care in England, in comparison to Scotland.
The consequences for patients when faced with limited medical awareness and delayed diagnosis and treatment were illustrated in the results of a Lyme patient experience survey by Lyme Resource Centre, undertaken in 2024. Feedback came from 450 responders – all cases confirmed by a qualified health professional.
Read more in our summary – Lyme disease in primary care and patient outcomes.
Next steps:
We are encouraged that progress is being made in tackling some of the knowledge gaps highlighted by NICE, in addition to work on tick ecology and understanding the risk of infection within the UK.
We also appreciate the importance of further clinical research of a quality accepted by NICE to ensure the appropriateness and safety of any future treatments offered on the NHS. However the urgent need for improved testing and treatment for Lyme disease and co-infections is an ongoing primary concern, particularly for late-stage patients who may have struggled with terrible symptoms for years.
The surge in funding directed in recent years to better understanding long Covid, ME/CFS and other post infectious illnesses is thankfully beginning to change the landscape for those with Lyme. Research is extremely expensive and funding now needs to be found for more focused studies that truly have scope to bring improvements for both current and future Lyme patients. New tests and treatments are emerging globally as concerns about tick-borne diseases grow. The momentum is truly encouraging and we aim to proactively support this enthusiasm for new research here in the UK.