EuroLyme EU PETItion Presentation
This is the presentation given on April 7th 2025
to 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
http://www.lymeplus.com/
https://www.europarl.europa.eu/petitions/en/petition/content/0986%252F2023/html/Petition-No-0986%252F2023-by-John-Vandeput-%2528Belgian%2529%252C-on-behalf-of-EuroLyme%252C-on-reliable-blood-tests-for-Lyme-disease
Spoken version
Extended version
Spoken version
Dear Mr Chair
Dear Members of European Parliament´s Committee of Petitions
Dear patients and medical professionals
I am John Vandeput, a Belgian Lyme disease patient.
I am founder of EuroLyme, representing European groups for Lyme disease.
On November 15th 2018, this House approved the resolution on Lyme disease.
This resolution motivates that Lyme disease is still underdiagnosed and appropriate diagnostic tests are absent.
Since this resolution has been voted, very little of its recommendations has unfortunately been implemented.
A 2019 German Eurosurveillance document shows how difficult it is to estimate the real number of Lyme patients.
Recent developped tests have not been used to give a realistic estimated percentage of borrelia infections.
But we know we count in percentages.
The European Commission commissioned a scoping study about EU underfunded diseases.
Chronic Lyme is on this list.
The European Commission has designated a consortium as a reference laboratory for one specific area of public health on high risk emerging and zoonotic bacterial pathogens, which cause, for example, Lyme disease.
So the high risk is recognised in the regulation of one year ago.
The Robert Koch Institute, a German government linked 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.
The Irish Blood Transfusion Service does not test donations for Borrelia burgdorferi, the agent that causes Lyme Disease.
There is no test that is licensed for blood donor screening purposes.
That is why we came up with a petition for research
on the borrelia blood test comparison.
16 Lyme disease patient groups are supporting this petition.
We are trying to show that
underfunded diseases do not fit the procedures of the European Union's project funding.
Since the reliability of existing Lyme blood tests is not tested or proven, a big comparison is needed.
Research based on tests (even if experimental) showing the end of an active infection, can bring more accurate perspectives for 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.
Doctors, performing the treatment, will determine the treatment duration based on their knowledge and the results of this blood tests project.
There is too much gossip and few certainty about the useful duration of borrelia suppression treatment.
This project aims to follow a patient group from the decision to start the treatement until the borrelia is suppressed to an undetectable level.
Meaning that the comparison project follows the same patient during the whole treatment (mostly less than one year), repeating blood tests monthly.
If the patient kept the tick, the project will also test the tick blood.
In order to understand the link with patient symptoms, the blood test results will be compared to the Horowitz Lyme-MSIDS Questionnaire.
For Europe we include 9 borrelia species.
The blood tests to be compared are :
- DualDur
- Phelix Phage
- EliSpot
- several evolved ELISA
and
- several evolved Blot
The project aims to compare the blood tests and publish processed result data.
The doctors, performing the treatment, will be proposed by the 16 involved groups.
These groups will also ask medical experts to write an evaluation of the reliability of the blood tests.
An extended version of this intervention with links can be found on
www.eurolyme.eu
Thank you for your attention.
Spoken version
Extended version
Extended version
Dear Mr Chair
Dear Members of European Parliament´s Committee of Petitions
Dear patients and medical professionals
I am John Vandeput, a Belgian Lyme disease patient.
I am founder of EuroLyme, representing European groups for Lyme disease.
https://www.eurolyme.eu/
We use the term LymePlus to cover the disease caused by all borrelia species, all tick bite infections, linked bacteria, viruses, parasites, and fungi.
EuroLyme advocates for innovative research and more patient-oriented legislation about LymePlus disease, based on non-dicrimination between patients and prevention and health care for all.
It aims to help the European Union institutions designing concrete plans to address the concerns of Lyme patients.
On November 15th 2018, this House approved the resolution on Lyme disease (borreliosis).
https://www.europarl.europa.eu/doceo/document/TA-8-2018-0465_EN.html
This resolution motivates that Lyme disease is still underdiagnosed and appropriate diagnostic tests are absent.
Since this resolution has been voted, very little of its recommendations has unfortunately been implemented.
A 2019 German Eurosurveillance document shows how difficult it is to estimate the real number of Lyme patients.
Epidemiology of Lyme borreliosis based on outpatient claims data of all people with statutory health insurance, Germany, 2019.
https://www.eurosurveillance.org/content/10.2807/1560-7917.ES.2022.27.32.2101193
Recent developped tests have not been used to give a realistic estimated percentage of borrelia infections.
But we know we count in percentages.
The European Commission commissioned a scoping study about EU underfunded diseases.
Chronic Lyme is on this list.
Scoping study on evidence to tackle high-burden under-researched medical conditions.
https://www.nivel.nl/sites/default/files/bestanden/1004310.pdf
The European Commission has designated a consortium as a reference laboratory for one specific area of public health on high risk emerging and zoonotic bacterial pathogens, which cause, for example, Lyme disease.
Commission Implementing Regulation (EU) 2024/892 of 22 March 2024 designating European Union reference laboratories for certain specific areas of public health
https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=OJ:L_202400892
So the high risk is recognised in the regulation of one year ago.
Kathleen Funchion (The Left) & Lynn Boylan (The Left)
addressed an EU parliamentary written question
to the European Commission
asking for adequate diagnostics and data collection on Lyme disease
Adequate diagnostics and data collection on Lyme disease
https://www.europarl.europa.eu/doceo/document/E-10-2025-000702_EN.html
The Robert Koch Institute, a German government linked institute, recognises on its website :
RKI - Borreliose (Lyme-Borreliose) - Lyme-Borreliose
https://www.rki.de/DE/Aktuelles/Publikationen/RKI-Ratgeber/Ratgeber/Ratgeber_LymeBorreliose.html?nn=16905182
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.
The Irish Blood Transfusion Service does not test donations for Borrelia burgdorferi, the agent that causes Lyme Disease.
There is no test that is licensed for blood donor screening purposes.
EuroLyme Blood Transfusion Services
http://eurolyme.eu/index.php/en/research/blood-transfusion-services
That is why we came up with a petition for research
on the borrelia blood test comparison.
16 Lyme disease patient groups are supporting this petition.
We are trying to show that
underfunded diseases do not fit the procedures of the European Union's project funding.
Since the reliability of existing Lyme blood tests is not tested or proven, a big comparison is needed.
Research based on tests (even if experimental) showing the end of an active infection, can bring more accurate perspectives for 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.
Doctors, performing the treatment, will determine the treatment duration based on their knowledge and the results of this blood tests project.
There is too much gossip and few certainty about the useful duration of borrelia suppression treatment.
This project aims to follow a patient group from the decision to start the treatement until the borrelia is suppressed to an undetectable level.
Meaning that the comparison project follows the same patient during the whole treatment (mostly less than one year), repeating blood tests monthly.
If the patient kept the tick, the project will also test the tick blood.
In order to understand the link with patient symptoms, the blood test results will be compared to the Horowitz Lyme-MSIDS Questionnaire.
The answers to all 50 questions will be recorded.
For Europe we include 9 borrelia species.
The blood tests to be compared are :
- DualDur
- Phelix Phage
- EliSpot
- several evolved ELISA
and
- several evolved Blot
The CD57 marker is not testing the borrelia infection itself,
but can be useful to compare conformity with other tests.
The project aims to compare the blood tests and publish processed result data.
The results of the trial project would give input for research on blood transfusion safety and mother/child contamination.
The labs can keep the leftovers of the blood samples.
Connected with the information of the treating doctors and the other labs,
this builds a well documented blood bank.
The doctors, performing the treatment, will be proposed by the 16 involved groups.
These groups will also ask medical experts to write an evaluation of the reliability of the blood tests.
Thank you for your attention.
Spoken version
Extended version
