Lyme disease and diagnostic uncertainty in the European Union – an issue rising to the political level
One of the key developments in recent times is that issues relating to the diagnosis and treatment of Lyme disease are no longer confined to professional forums, but have also reached the level of European decision-making. The so-called EuroLyme petition, which has been submitted to the European Parliament, indicates that the concerns long expressed by patients and certain professional stakeholders are now receiving institutional attention.
The petition does not present new scientific findings, but summarises experiences and shortcomings relating to the functioning of the current system. At its core is the question of how effective the diagnosis and treatment of Lyme disease are in Europe, and to what extent they meet patients’ actual needs.
Diagnostic challenges in practice
A key element of the petition is the issue of diagnostic uncertainty. The diagnosis of Lyme disease currently relies heavily on serological tests, which, however, are limited in several respects. In cases of early infection, the sensitivity of the tests may be lower, and not all patients show clear laboratory abnormalities. Furthermore, the clinical picture is varied: the classic skin rash does not appear in every case, and the symptoms often resemble those of other diseases.
According to the document, this situation can lead to some patients receiving a delayed diagnosis or failing to receive clear confirmation at all. This is particularly problematic for those living with recurrent or persistent symptoms, as an uncertain diagnosis also complicates further care.
Fragmentation of the system
The EuroLyme initiative also highlights that there are significant differences in diagnostic and treatment practices across European countries. Guidelines, laboratory methods and interpretative frameworks are not standardised everywhere, which can lead to differing patient pathways and varying outcomes.
This fragmentation is not only a professional issue but also a health policy one: it raises the need for a more unified European approach, particularly in the case of a disease that affects several countries and whose incidence is on the rise in certain regions.
Proposed directions
The petition identifies several areas where progress is needed. These include:
- the development of diagnostic tools and independent assessment of their reliability
- harmonisation of clinical and laboratory practices, and the development of more uniform guidelines
- strengthening knowledge sharing between Member States
- and the establishment of data collection systems that provide a more accurate picture of the incidence and course of the disease
These recommendations do not represent a specific therapeutic approach, but rather focus on improving the functioning of the system.
The fact that the issue of Lyme disease diagnosis has been raised in the European Parliament is noteworthy in itself. This suggests that the problem extends beyond individual cases and has broader public health significance.
Several factors may lie behind this: changes in the distribution of ticks, an increase in case numbers in certain regions, and the observation that some patients continue to experience symptoms over the long term. Together, these factors increase the need for a more comprehensive, coordinated approach.
The EuroLyme petition does not provide definitive answers to questions regarding the diagnosis of Lyme disease, but it is an important signal. It shows that the uncertainties and discrepancies surrounding current practice have reached such a level that they require dialogue at European level.
One of the key questions in the coming years may be what concrete changes this political attention will lead to: whether it will be possible to harmonise practices across countries, improve the reliability of diagnostic tools, and strengthen the patient-centred approach to the management of Lyme disease.
The European Parliament had previously emphasised the importance of diagnostic developments in its 2018 resolution on Lyme disease. In this document, it cites the Hungarian-developed DualDur test as a positive example of an innovative approach to detecting Lyme disease and supports similar research and development projects. This clearly demonstrates that diagnostic challenges and the need for innovation have been part of EU policy thinking for years.
source: https://www.europarl.europa.eu/doceo/document/E-10-2026-000634_EN.html
(C) Lyme Borreliosis Foundation
