Commission support for the Member States on ME/CFS research, data collection and medical education
In the last months the European ME Alliance has been engaging with MEPs regarding the plight of people with ME (also referred to as ME/CFS).
One of the lines of activity concerned questions that EMEA wished to ask of the European Commission .
The questions submitted by EMEA were originally as follows -
We thought the following were reasonable questions for the European Commission to answer, especially as some believe that EU resolutions mean something and need to be acted upon. The EU Resolution on ME that was made five years ago, along with actions that were agreed, have - very much like ME - seemingly been invisible to all intents and purposes.
Kindly, MEP Romana Jerković from Croatia agreed to put our questions through to the European Commission .
About this article
EMEA’s questions to the European Commission as follow-up to the 2020 resolution on ME. It highlights the lack of progress and EMEA’s continued advocacy for coordinated action and patient rights.
EMEA Submission to European Commission
The questions from EMEA revolved around asking member states what they have done
to implement the 2020 EU Parliament Resolution on ME (2020/2580(RSP).
At the time
the Resolution itself estimated that 2 million people in Europe would be afflicted - a number now surely out of date,
- and still unknown for sure.
- What research is being funded, or what strategy is being employed, to determine the aetiology and pathogenesis of ME/CFS, recognised by WHO under ICD-10 G93.3 and subsequently ICD-11 Code 8E49?
- Has your country launched the nation-wide information and communication campaigns among health professionals, government officials, and the public to alert the population to the existence and symptoms of ME/CFS? If yes, please provide the link.
- What educational training do medical students receive about ME/CFS in their curriculum?
Questions in the EU parliament have constraints and need to be worded in a special way that is directed by guidelines.
The questions and follow up discussions with MEP Jerković resulted in the questions below.
The questions and information put to the European Commission by EMEA were -
Questions from EMEA to European Commission
The European Parliament resolution of 18 June 2020 on myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS)[1], an illness recognised by the WHO as a neuroimmune disease (internationally classified as ICD-10 G93.3 and more recently ICD-11 8E49), called for increased biomedical research and funding, harmonised EU-wide prevalence data and improved medical education to address the profound and devastating human and economic burden of the illness.
Five years later:
there is still no harmonised data collection system for ME/CFS in place; prevalence and burden reporting remain voluntary and inconsistent across the Member States; EU-funded tools called for in the resolution have not been implemented as a mandatory platform; patients continue to experience profound neglect, stigma and unmet needs, as documented in the European ME Alliance pan-European survey[2], highlighting disparate services and poor patient outcomes.
Given the lack of tangible progress:
- 1. How is the Commission supporting the Member States in establishing a research strategy and funding a harmonised ME/CFS data collection and reporting system to determine the prevalence, aetiology and pathogenesis of ME/CFS, and what is the Commission’s timeline for implementation?
- 2. How is the Commission assisting the Member States in integrating ME/CFS education into medical curricula and postgraduate training, ensuring that it aligns with international clinical guidelines and includes competencies, assessments and audits?
Source: https://www.europarl.europa.eu/doceo/document/E-10-2025-003626_EN.html
This is the response received from the European Commission -
Questions from EMEA to European Commission
The Commission recognises the need to support research on Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and the Health Cluster Work Programme of Horizon Europe[1] has recently offered funding opportunities[2].
The Commission also supports the new European partnership for Brain Health[3], which is expected to start in January 2026, and which should also cater to the needs of researchers in the ME/CFS area.
Horizon Europe will continue to provide funding opportunities[4] for further research on ME/CFS. The European Health Data Space[5], which aims to improve health data exchange across the EU and access to those data for research could eventually provide a framework for harmonising data of different disorders, including ME/CFS.
Regarding assisting Member States in integrating ME/CFS education into the curricula of medical higher education institutions, the Commission emphasises the importance of quality assurance in education, which aligns with the Standards and Guidelines for Quality Assurance in the European Higher Education Area (ESG).
These standards serve as a robust framework for ensuring that curricula and postgraduate training programs meet high quality benchmarks.
While the Commission fully respects academic freedom and institutional autonomy and therefore does not direct or prescribe the content of curricula, it actively encourages Member States and educational institutions to incorporate the ESG into their education systems.
[1] https://research-and-innovation.ec.europa.eu/funding/funding-opportunities/funding-programmes-and-open-calls/horizon-europe_en
[2] Opportunities include a 2025 call topic ‘Tackling high-burden for patients, under-researched medical conditions’ (https://ec.europa.eu/info/funding-tenders/opportunities/portal/screen/opportunities/topic-details/HORIZON-HLTH-2025-01-DISEASE-07), and a similar one in 2024 (https://ec.europa.eu/info/funding-tenders/opportunities/portal/screen/opportunities/topic-details/horizon-hlth-2024-disease-03-14-two-stage). In 2023, projects funded under the topic ‘Relationship between infections and non-communicable diseases’ (https://ec.europa.eu/info/funding-tenders/opportunities/portal/screen/opportunities/topic-details/HORIZON-HLTH-2023-DISEASE-03-07) include one also studying ME/CFS (https://cordis.europa.eu/project/id/101136582) and another studying diseases caused by the post-acute phase of COVID-19 infection (https://cordis.europa.eu/project/id/101137196), where the knowledge gained will also benefit the field of ME/CFS.
[3] https://www.brainhealth-partnership.eu/
[4] https://ec.europa.eu/info/funding-tenders/opportunities/portal/screen/home
[5] https://health.ec.europa.eu/ehealth-digital-health-and-care/european-health-data-space-regulation-ehds_en.
[6] https://ehea.info/page-ministerial-conference-yerevan-2015
Source: https://www.europarl.europa.eu/doceo/document/E-10-2025-003626-ASW_EN.html
EMEA Comment
It is clear that EMEA still has much work to do.
The European ME Alliance (EMEA) raised our critical concerns about the lack of progress regarding the policies in place for ME, five years after a European Parliament’s 2020 resolution on the subject.
The questions highlighted the absence of harmonised prevalence data collection (a key point EMEA has been making for some time); inconsistent reporting across Member States (despite, as our webinars showed, the existence of tools that can easily produce this); failure to establish EU-mandated research platforms – centres of excellence; and ongoing patient neglect and stigma.
This last point has been allowed to exist for decades and it is not good enough.
EMEA's questions sought what concrete steps and timelines the European Commission has to support coordinated research, data harmonisation, and integration of ME/CFS education in medical training aligned with international standards.
In response, the European Commission acknowledged the importance of supporting ME research and pointed to Horizon Europe funding opportunities and the forthcoming European partnership for Brain Health starting in 2026 as frameworks contributing to research efforts.
The Commission noted the potential of the European Health Data Space to standardise health data, including for ME, in the longer term.
However, the Commission stopped short of a commitment to mandatory harmonised data systems or specific timelines – a position we consider to be shortsighted.
On education, the Commission emphasised adherence to quality assurance standards under the European Higher Education Area but stressed that curriculum content remains the prerogative of Member States and institutions, with the Commission only encouraging voluntary uptake.
While this is true, ‘voluntary uptake’ is not a policy.
It allows stigma to continue and permits Member States to repeatedly fail people with ME and their families.
EMEA’s reasoning centres on the urgent need for concrete, coordinated EU action to address ME research gaps and lack of any
coordinated strategy.
EMEA is already leading this work through initiatives such as EMERG, Young EMERG, and EMEA itself.
We also require data consistency, and educational integration, that accurately reflects the profound impact on patients.
The EU’s response, while recognising these issues and referencing funding and framework initiatives, lacks binding
commitments, timelines, or mandatory measures.
This leaves progress fragmented and reliant on voluntary national and institutional choices.
This mismatch explains the ongoing patient dissatisfaction and policy inertia highlighted by EMEA and many of its members
in their own countries.
So, more work remains to be done. And EMEA will continue to influence policies in Europe and work with the EU and the WHO, along with our European partners.
We would like to extend our sincere thanks to MEP Romana Jerković for her support and for working closely with us to
raise these crucial questions.
The European ME Research Group (EMERG), supported by EMEA and sponsored by EMEA UK,
has taken advantage of one of the schemes
created by the European Commission
mentioned in the response above,
and sought support for an excellent pan-European research project.
We will continue to follow up within the European Health Data Space regarding prevalence and
data collection for ME.
Additionally, EMEA will persist in advocating for the inclusion of ME/CFS
in national medical curricula and postgraduate training, ensuring that the needs of patients remain
central to policy and education.
