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Parliament of the European Union Petition – Update

The European Parliament’s historic vote on 17th June 2020 urging the Commission to transform the ME research landscape was widely acclaimed as a major step forward. The problem being that a Resolution of the European Parliament is not binding and merely a request to the Commission to act. Mindful of this, the Petitioner, Ms. van Den Brink, and MEP Jordi Cañas Pérez, sought clarification of the Commission’s intensions. The European Parliament has returned to the issue and, on 1st December 2021, the Committee on Petitions of the European Parliament (PETI) held a second discussion on the Petition 0204/2019 where Ms. van Den Brink (also co-founder of the European ME Coalition (EMEC)) spoke to the MEPs and contrasted the progress made in funding for research in Australia, Canada, and the USA with the lack of concrete results since the resolution was adopted saying: “Things are moving very slowly and, frankly, it is not clear in which direction.”

In response, the representative of the European Commission, Ms. Catherine Berens, highlighted ways the Commission says it has supported research in the past but

The Commission acknowledges that myalgic encephalomyelitis/chronic fatigue syndrome imposes a heavy burden on patients and their families and recognizes that the lack of specific diagnostic tools and treatments to tackle this serious condition is a matter of concern.

Ms. Berens confirmed that European Commission is initiating a scoping study under Horizon Europe that will identify diseases of high public relevance that are relatively under-researched, such as ME/CFS. The study ought to address the gaps in robust scientific evidence and put forward reasons why such illnesses are poorly studied. It will help set out research priorities for the coming Horizon Europe work programs. One important aspect of the scoping study, Ms. Berens said, is that it should include different types of stakeholders including patient representatives. The call for tender is currently being finalised and the Commission expects the study to commence in early 2022.

European Parliament Petition Committee proceedings and submission by Ms. van Den Brink (32 min)