EuroLyme
EuroLyme initiative is a collaboration of Lyme disease patient groups.
ID: 084971650245-03
Lobbying Activity
Response to Union prevention, preparedness, and response plan for health crises
23 Oct 2025
EuroLyme initiative is a collaboration of Lyme disease patient groups. www.eurolyme.eu On November 15th 2018, the European Parliament approved the resolution on Lyme disease (Borreliosis) 2018/2774(RSP). This resolution motivates that the medical profession often follows outdated recommendations on Lyme disease that do not take sufficient account of research developments; that, although well known to medical science, Lyme disease is still underdiagnosed, in particular because of the difficulties encountered in the detection of symptoms and the absence of appropriate diagnostic tests; and the screening tests used for Lyme disease are not always able to provide accurate results, one such example being the Elisa test which only detects one infection at a time. Since this resolution has been voted, very little of its recommendations has unfortunately been implemented. www.europarl.europa.eu/doceo/document/TA-8-2018-0465_EN.pdf This Eurosurveillance document shows how difficult it is to estimate the real numbers of Lyme patients www.eurosurveillance.org/content/10.2807/1560-7917.ES.2022.27.32.2101193 The Robert Koch Institute, recognises on its website : that there is no available vaccine, there is lack of vector control and no reliable protection against tick bites. It concludes that both the diverse and variable manifestations of Lyme disease and the lack of reliable inclusion or exclusion of the disease using laboratory diagnostic tests make disease surveillance difficult. www.rki.de/DE/Aktuelles/Publikationen/RKI-Ratgeber/Ratgeber/Ratgeber_LymeBorreliose.html?nn=16905182 ECDC used a document describing of some aspects of Lyme disease. This (mis)leads to the following regrettable numbers. Survaillance Atlas of Infectious Diseases https://atlas.ecdc.europa.eu/public/index.aspx?Dataset=27&HealthTopic=76 The following 2023 document shows a failed attempt to count Lyme disease infected persons. Their final proposal is count only patients with rare severe visible symptoms. The document does not even propose to count all infected persons. The Landscape of Lyme Borreliosis Surveillance in Europe https://www.researchgate.net/publication/370103869_The_Landscape_of_Lyme_Borreliosis_Surveillance_in_Europe/fulltext/644034811b8d044c6335d5fa/The-Landscape-of-Lyme-Borreliosis-Surveillance-in-Europe.pdf On April 7th 2025, EuroLyme presented before the European Parliament's PETI Committee (Petitions) Petition No 0986/2023 by John Vandeput (Belgian), on behalf of EuroLyme, on Reliable blood tests for Lyme disease For Europe we include 9 borrelia species. All blood tests proposed for the EuroLyme EU PETItion blood test comparison research proposal have evolved since 2018. In the EuroLyme reply at the end of the petition discussion, EuroLyme already mentioned : the reference laboratories (EURLs) that the European Commission designated should give accounting of all borrelia infections (not a subset of symptoms), and the Lyme resolution of 2018 describes the current reimbursed tests, which are used in as far as i know every country, are giving a lot of fake results. www.eurolyme.eu/index.php/en/proposals/petition-presentation www.eurolyme.eu/index.php/en/events/petition-video The European Commission shows no proposals to obtain realistic diagnotics nor to obtain an accurate counting of Lyme disease patients. We see patient organisations are not involved. This is clearly not a task for European Centre for Disease Prevention and Control (ECDC) nor for the EU Reference Laboratories for public health (EURLs). They do not have a mandate nor the funding to perform this task. EuroLyme asks the European Commission to start preparations to count Lyme disease cases in a realistic way, and such implement EU regulations 2022/2371 and 2024/892. More info : www.eurolyme.eu/counting www.lymeplus.com
Read full responseResponse to Communication on the European Research Area Implementation
18 Sept 2024
The European Parliament's resolution of 15 November 2018 on Lyme disease (Borreliosis) 2018/2774(RSP) calls for development of new Lyme medicines and new Lyme diagnostic tests. EuroLyme EU Petition asks for research on reliability of blood tests Since the reliability of existing Lyme blood tests is not well examined, a big comparison is needed. All borrelia species should be included. Research based on tests (even if experimental) showing the end an active infection, can bring more accurate views on the treatment. Therefore repeated testing of a patient group with the few current blood tests showing the end of an active infection, needs extra attention. At least 6 types of blood tests should be compared For understanding the link with patient symptoms, the blood test results can be compared to a questionnaire. More info www.LymePlus.com EU funding provides possibilities to finance projects which could not be supported at national and/or regional level. All proposed blood test are developped in European Union. Some development did receive base funding from Horizon, before 2018. These existing blood tests are paid by the patients themselves (or seldom their private insurances). A better understanding of their performance can convince medical institutions and social security systems of their usefullness. Some blood tests can be improved using AI, but this does not make their research fit AI project procedures. This project proposal does not fit Horizon and other EU research investment plans. EU research efforts do not meet the Lyme patient needs described in the 6 year old resolution (2018).
Read full responseResponse to Interim evaluation of the EU4Health Programme 2021-2027
28 Dec 2023
EU4Health is effective in exchanging information between health stakeholders and European Commission. We recognise that EU4Health is delivering interesting communication tools and policy documents, but they mostly concern already researched and funded diseases. The following document contains a list of 16 underfunded diseases: Scoping study on evidence to tackle high-burden under-researched medical conditions www.nivel.nl/sites/default/files/bestanden/1004310.pdf Lyme disease (including Borreliosis) is the most common zoonotic disease in Europe. The European Parliament's resolution of 15 November 2018 on Lyme disease (Borreliosis) 2018/2774(RSP) decribes shortcomings in knowledge, diagnose, and treatment that should be urgently addressed : www.europarl.europa.eu/doceo/document/TA-8-2018-0465_EN.pdf Some of the other listed 15 diseases have also been object of European Parliament resolutions. The mere existence of this list proves the need for a specific and comprehensive discussion with the concerned patients, namely via a proper channel. This discussion forum could assess the follow up of the mentioned European Parliament resolutions in a patient's perspective. We regret that underfunded diseases do not fit the selection procedures of the EU DG Research Horizon framework. However, funding opportunities need to focus more on patients' needs. Moreover, based on descriptions of their needs, medical experts might be searched to participate in the projects.
Read full responseResponse to Evaluation and revision of the general pharmaceutical legislation
1 Jul 2023
Lyme disease (including Borreliosis), which is transmitted to humans by infected ticks, is the most common zoonotic disease in Europe. It is often treated with antimicrobials, which work well if taken properly. However, if left unattended, the disease can have a huge impact on the body. The European Parliament's resolution of 15 November 2018 on Lyme disease (Borreliosis) 2018/2774(RSP) calls for development of new Lyme medicines. www.europarl.europa.eu/doceo/document/TA-8-2018-0465_EN.pdf This Eurosurveillance document shows how difficult it is to estimate the real numbers of Lyme patients Epidemiology of Lyme borreliosis based on outpatient claims data of all people with statutory health insurance, Germany, 2019 www.eurosurveillance.org/content/10.2807/1560-7917.ES.2022.27.32.2101193 Chronic Lyme is on this list of EU underfunded diseases Scoping study on evidence to tackle high-burden under-researched medical conditions www.nivel.nl/sites/default/files/bestanden/1004310.pdf EuroLyme welcomes the interest in new classes of antimicrobials. As there are only three or four possible antibiotics coming into the development pipeline, alternatives to antibiotics will be needed. Unfortunately, products based on plant extracts are unpatentable, so the funding for their research is critical. Nevertheless, as plant extracts can replace specific antimicrobials or reduce their consumption, this alternative should be explored and subject to more investment.
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