European Parliament – Committee on Petitions (PETI) Meeting Report
Date: 7 April 2025
Subject: Petition No. 0986/2023 by John Vandeput on Reliable Blood Tests for Lyme Disease
Petitioner: John Vandeput (Belgium), on behalf of EuroLyme
Reference: 20250407-1500-COMMITTEE-PETI
Background and Purpose of the Petition
On April 7, 2025, the Committee on Petitions of the European Parliament convened to hear Petition No. 0986/2023, submitted by John Vandeput, a Belgian citizen and Lyme disease patient. Representing EuroLyme, a coalition of European patient advocacy groups, Mr. Vandeput presented a compelling case for the urgent need to improve Lyme disease diagnostics across the European Union.
In his opening remarks, Mr. Vandeput recalled that the European Parliament had already addressed the issue in a 2018 resolution that acknowledged the lack of appropriate and reliable diagnostic tests for Lyme borreliosis. Despite this, the resolution's recommendations have remained largely unimplemented. He cited a 2019 Eurosurveillance article which highlighted the challenge of estimating the true prevalence of Lyme disease in Europe—an issue compounded by ineffective and outdated diagnostic tools.
Shortcomings in Current Diagnostics and Surveillance
Vandeput noted that although some newer testing methods have been developed, they are not in widespread use, making it difficult to obtain realistic data on the true burden of Borrelia infections. This gap in accurate surveillance and diagnosis is particularly problematic given the nature of Lyme disease, which often presents with diverse and non-specific symptoms.
He also referenced a European Commission scoping study on under-researched diseases, where chronic Lyme disease was officially recognized as a high-burden condition. Furthermore, he pointed to the Robert Koch Institute (Germany) which publicly acknowledges the absence of a vaccine, a lack of protective strategies against tick bites, and significant limitations in diagnostic reliability. According to the Institute, the disease’s varied symptoms and unreliable test results make it difficult to confirm or exclude a Lyme diagnosis with certainty.
Blood Supply and Lack of Screening Standards
One particularly troubling detail raised during the session was that, in some countries, blood banks do not screen for Borrelia burgdorferi, the bacterium that causes Lyme disease. For example, Ireland’s national blood transfusion service does not test for this pathogen, due to the absence of any blood-screening test officially licensed for Lyme detection. This omission poses a significant public health risk, especially for immunocompromised patients receiving transfusions.
Proposal for a Pan-European Comparative Study
To address these deficiencies, Mr. Vandeput and the 16 patient groups backing his petition are proposing a comprehensive research project. The initiative would conduct a comparative study of blood tests currently used—or being developed—for the diagnosis and monitoring of Lyme disease.
The project aims to:
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Assess how well these tests detect active infections.
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Track patient progress over the course of treatment, using repeated blood tests (conducted monthly) to measure disease activity and recovery.
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Include nine Borrelia species, along with various ELISA and Western blot assays, to test for their diagnostic sensitivity and specificity.
The study would also incorporate patient-reported outcomes using tools like the Horowitz Lyme-MSIDS Questionnaire, linking symptom reports with laboratory results. Importantly, the same patient group would be followed over the course of treatment, which typically lasts less than a year.
If patients remain symptomatic, antibody levels (IgM and IgG titers) would also be measured to investigate the relationship between immune response and lingering symptoms. Data would then be used to inform treatment decisions, improve diagnostic reliability, and potentially adjust treatment durations.
Call for Institutional Involvement
The petitioner concluded by emphasizing that existing EU funding structures are poorly suited to support research on chronic, under-defined conditions such as Lyme disease. The proposed study would fill a crucial gap by evaluating diagnostic methods through real-world longitudinal patient data and calling on medical experts to independently assess the validity of the tests involved.
An extended version of this proposal, with additional scientific references and links, was submitted as part of the petition documentation.
European Commission’s Initial Response
Responding to the petition, a representative of the European Commission’s Directorate-General for Health thanked Mr. Vandeput and the patient groups for raising these concerns. The Commission recognized Lyme disease, particularly neuroborreliosis, as a serious public health issue and confirmed that efforts are being made through both policy and research avenues.
However, the Commission reiterated the legal reality: healthcare delivery and diagnostic practices fall under national competence, as outlined in Article 168(7) of the Treaty on the Functioning of the European Union (TFEU). Therefore, testing protocols and treatment options can vary widely between EU member states.
Nonetheless, the Commission emphasized that Lyme disease remains a priority disease under the surveillance scope of the European Centre for Disease Prevention and Control (ECDC). Lyme neuroborreliosis has been included in the list of diseases reportable at EU level since 2018.
Research and Regulatory Developments
The Commission further highlighted a number of concrete steps already taken or in progress:
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The establishment of a new reference laboratory for public health with a focus on high-risk and emerging diseases, including Lyme disease.
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The commissioning of a scoping study identifying chronic Lyme as under-researched, which directly contributed to the creation of research calls under Horizon Europe.
In terms of diagnostics, the Commission pointed to updates in regulatory standards. The outdated Directive 98/79/EC is being replaced by the more stringent Regulation (EU) 2017/746, which enforces higher performance and clinical evidence standards for in-vitro diagnostic tools. Under this regulation:
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Manufacturers must submit clinical data on test reliability.
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Independent "notified bodies" will be responsible for safety and performance validation.
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Riskier diagnostic devices will be subject to even stricter evidence and documentation requirements.
The Commission acknowledged the petitioner’s reference to the DualDur test, which had demonstrated promising results in a large clinical trial. Additionally, a new Horizon Europe project (PREPARE-TID) has received €6 million to develop rapid diagnostics for infectious diseases, including Lyme.
Lastly, the Commission mentioned another EU-funded cross-border initiative that has allocated €750,000 toward the use of nanotechnology and artificial intelligence in Lyme diagnostics.
Commission's Final Recommendations and Encouragement to Patient Stakeholders
In the latter part of its response, the European Commission reiterated its respect for the division of competences under EU law, noting that national governments maintain control over testing and treatment protocols. However, it highlighted the potential of the new EU reference laboratory for public health to contribute toward harmonizing standards across member states. One of the laboratory’s early goals will be to evaluate how effectively national reference labs can identify Borrelia bacteria, through external quality assessments using shared sample testing.
This initiative aligns with Mr. Vandeput’s proposal for a comparative study of blood tests. The Commission described this alignment as an encouraging sign that such patient-led projects could complement EU-level efforts to improve diagnostic accuracy and patient monitoring.
The Commission closed its remarks by encouraging EuroLyme and similar patient associations to:
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Actively engage with research institutions,
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Pursue opportunities through EU research funding schemes, and
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Cooperate with national health authorities to advocate for improved diagnostics.
The Commission reaffirmed its openness to collaboration, stressing that improved outcomes for Lyme patients would require active partnerships between institutions, researchers, and civil society.
Reactions from Members of the European Parliament
Broad Political Consensus in Support of the Petition
Following the Commission’s remarks, representatives of various political groups within the European Parliament expressed strong support for Mr. Vandeput’s petition and echoed concerns raised by Lyme disease patients and advocacy groups.
European People’s Party (EPP)
The EPP speaker began by thanking Mr. Vandeput for bringing the issue to the European Parliament. They acknowledged the difficulty Lyme patients face when accurate diagnosis is not available and stressed the need for complementary EU-level actions. The MEP noted that while healthcare remains a national competence, the European Centre for Disease Prevention and Control (ECDC) and EU research programs could take more decisive roles in supporting accurate diagnostics.
They concluded by supporting the continued processing and monitoring of the petition, emphasizing the importance of aligning EU initiatives with patients’ needs.
Progressive Alliance of Socialists & Democrats (S&D)
The S&D group delivered one of the most comprehensive responses. Their spokesperson described the current diagnostic reality as unacceptable, with thousands of European citizens facing delays or contradictory diagnoses due to inadequate tests.
Their remarks included feedback gathered from various Lyme associations across Europe, who shared accounts of years-long efforts to push for recognition and better care. These groups highlighted not only medical impacts but also a crisis of public trust—as patients increasingly lost confidence in national health systems and the EU itself due to lack of effective solutions.
The S&D group outlined four key criticisms:
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Persistent inequality in access to early and effective diagnostics across EU states.
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A failure to effectively implement regulations for in-vitro medical devices.
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The absence of a comparative validation framework at the EU level.
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Inefficiency in turning EU-funded research into real clinical benefits for patients.
To address these, they made three formal proposals:
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Creation of a specialized working group within the ECDC to harmonize diagnostic protocols.
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Development of a European best practices guide for Lyme disease detection and follow-up.
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Establishment of a European register of Lyme disease cases, including diagnostic and treatment data to guide evidence-based policymaking.
They concluded by insisting that the petition remain open and active.
Identity and Democracy (ID) – No statement recorded in this session
European Conservatives and Reformists (ECR)
No representative was present for this session.
Renew Europe (RE)
A Renew Europe MEP from Ireland also voiced strong support. The representative thanked both Mr. Vandeput and Lyme advocacy group Lyme Chat Éire for bringing the matter forward. Though newly elected, the MEP noted personal familiarity with Lyme disease and acknowledged the suffering endured by patients due to diagnostic delays.
The speaker emphasized that despite the 2018 resolution and additional funding, major disparities still exist in how Lyme disease is diagnosed and treated across EU member states. This means that a patient’s outcome may depend heavily on their country of residence, which is both medically and ethically unacceptable.
They highlighted the emotional and physical burden of patients living with a misunderstood condition, often summed up in three tragic experiences:
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Misdiagnosed
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Mistreated
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Misunderstood
The MEP strongly criticized complacency, arguing that while Article 168(7) limits EU powers, this "does not give us the right to shrug our shoulders." Instead, the speaker drew on lessons learned from the COVID-19 pandemic, reminding fellow MEPs of how much can be achieved when Europe pools resources, standardizes protocols, and works collectively toward common goals.
They formally supported the S&D proposals, especially:
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The ECDC working group,
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Best practices guide,
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A centralized EU data registry.
Additionally, they called for:
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Funding for medical training and continuing education on Lyme diagnostics,
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Greater public awareness and communication efforts.
The MEP closed by advocating for the petition to remain open and for the EU to take more urgent and coordinated action.
The Greens/European Free Alliance (Greens/EFA)
The representative from the Greens/EFA began their remarks by greeting Mr. Vandeput and expressing gratitude for his work. (Note: the remainder of their comments was not captured in the transcript you provided. If you have the rest of their statement, I’ll be happy to integrate it here.)
Conclusion
Across the political spectrum, there was clear and consistent support for the petitioner’s message: current diagnostics for Lyme disease are inadequate, and Europe must do more to address the crisis facing thousands of patients. While institutional limitations exist, such as the division between EU and national competences, MEPs repeatedly emphasized that research, coordination, and shared standards are areas where the EU can and must play a stronger role.
The Committee on Petitions is expected to keep the petition open, ensuring that the issue remains on the Parliament’s radar. Members proposed actionable next steps, including coordinated EU working groups, best-practice guidelines, centralized data registries, and better engagement between institutions, researchers, and civil society.
For the millions affected by Lyme disease across Europe, the petition signals a turning point—a call not only for better science, but for institutional accountability and human dignity in healthcare.