The COVI workshop on Long Covid: a brief summary

On 9 March, a workshop on Long Covid was held in the European parliament. Various invited experts and Members of Parliament highlighted a link between ME/CFS and Long Covid. In February, the European Parliament’s Special Committee on COVID-19 (the COVI Committee) published a draft report on lessons learned from the pandemic and recommendations for theContinue reading “The COVI workshop on Long Covid: a brief summary”

Press release: EU supports research on poorly understood diseases

Thanks to the dedicated work of Belgian Member of the European Parliament (MEP) Pascal Arimont and colleagues, Horizon Europe will provide new funding opportunities for research on high-burden, under-researched diseases. While modern medicine has produced many spectacular breakthroughs, some diseases remain poorly understood to this day. These illnesses often cause chronic pain and debilitating fatigueContinue reading “Press release: EU supports research on poorly understood diseases”

A new response from the EU Commission

In February 2022, a group of Members of the European Parliament (MEPs) headed by Pascal Arimont wrote several letters on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) to the European Commission. This article provides an overview of the Commission’s response to these letters. The MEPs, who form the parliamentary interest group for ME/CFS, highlighted the lack ofContinue reading “A new response from the EU Commission”

Parliamentary interest group for ME/CFS writes to European Commission

The European parliamentary interest group on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has written two letters to the European Commission. One was addressed to Stella Kyriakides, European Commissioner for Health and Food Safety. The other was sent to the Directorate-General for Health and Food Safety (DG SANTE). Both letters highlight the lack of action taken afterContinue reading “Parliamentary interest group for ME/CFS writes to European Commission”

A parliamentary interest group for ME/CFS

On 28 January 2022, the first meeting of a new parliamentary interest group on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was held. Organized by Pascal Arimont, the group will allow for a more structured collaboration on topics concerning the illness ME/CFS in the European Parliament. The meeting brought together patient representatives, Members of the European ParliamentContinue reading “A parliamentary interest group for ME/CFS”

Scoping study

There is progress at the European level, but things are moving slowly. The European Commission plans to issue a scoping study that will include ME/CFS. Below, you can read an update on our work to get ME/CFS research funded through Horizon Europe, the 95 billion euro research program of the European Union. Representatives of theContinue reading “Scoping study”

The next step: a new proposal by the European Commission

In response to a parliamentary question by Pascal Arimont, the European Commission stated that it is working to address under-investigated conditions, of which ME/CFS is a paradigmatic example, in the first work programme of Horizon Europe. Although the details of the proposal are still confidential, we believe this could be an important step towards increasedContinue reading “The next step: a new proposal by the European Commission”

A constructive meeting

Thanks to Belgian member of parliament Pascal Arimont, EMEC was able to have a constructive meeting with representatives of the European Commission. The Commission has taken on board our concerns as strongly expressed by the European Parliament. We will continue to work to make sure that the commitments made in the ME/CFS resolution are turnedContinue reading “A constructive meeting”