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 increased funding for ME/CFS research in Europe.

European flags. The EU Commission proposes to address under-investigated conditions like ME/CFS in the first work programme of Horizon Europe.

On 7 October 2020, Belgian Member of the European Parliament (MEP) Pascal Arimont asked a parliamentary question on research into myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Arimont asked how the European Commission would increase funding for biomedical research on ME/CFS as specified in a recent parliamentary resolution.

The European Commission answered his question on 4 December 2020. Although Commissioner Gabriel’s response isn’t very detailed, it includes a promising paragraph:

“Moreover, the Commission services are currently working closely with the Member States in order to address under-investigated conditions, of which ME/CFS is a paradigmatic example, in the first work programme of Horizon Europe.”

The cluster of Health in Horizon Europe, the research program of the EU, has a budget of more than 6 billion euros. If this new category of under-investigated illnesses like ME/CFS was included in the work program of Horizon Europe, this would mean a great step forward. It would allow European ME/CFS scientists to apply more easily for research funding, not just once, but on a structural basis.

Associated countries like Norway, Switzerland and the UK also contribute financially to Horizon Europe and scientists from these countries will be able to apply for funds as well.

From conversations and correspondence with representatives of the Commission we know that this special provision is the most realistic way to make progress. We received a letter from the Commission that stated that their services have been following this issue closely and that they are presently working with the Member States on how to best address this need in Horizon Europe. Unfortunately we do not know the details of the proposal that is on the table. The content of the first HE work program is still confidential and will only be shared publicly in the first quarter of 2021.

The Commission reiterated that we can count on their steady support for this cause. The Commission reconfirmed that it stands ready to work together to achieve tangible progress, regardless of the very challenging times we are living in.

The most important next step will be to get the approval of the Member States for the Commission’s proposal. We have asked several patient organizations throughout Europe to help us contact their responsible Ministers. We thank them for their support.

As members of EMEC we will do our very best to make sure these promising ideas will come to life, so that European ME researchers will be able to research the illness. We hope this will ultimately lead to a better future for people with ME/CFS.