Chronic fatigue syndrome (CFS/ME)

Subject: Chronic fatigue syndrome (CFS/ME)

An estimated 2 million people suffer from chronic fatigue syndrome (CFS/ME) in the European Union. Exceptionally rapid physical and mental exhaustion are the main symptoms of this chronic disease, which in extreme cases can lead to extensive disability and the need for long-term care. Although the condition is internationally recognised as a disease in its own right, the medical profession’s understanding of it remains limited, meaning it often fails to be diagnosed. We adopted a resolution to provide funding for further research into this disease on 18 June 2020. In this context, I have the following questions:

1. What has been done to date as regards research funding?

2. How does the Commission intend to raise awareness and improve research in this area in future?

3. Is there any global coordination/collaboration between health authorities and pharmaceutical companies in the area of drug research, and what could be improved in this area?

Answer given by Ms Gabriel on behalf of the European Commission

(15 March 2022)

Previous Union Framework Programmes for Research and Innovation supported several research projects relevant to Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) (1), including on conditions that could help shed light on it i.e. long COVID (2).

Horizon Europe is expected to continue offering funding opportunities for research on ME/CFS, notably through its cluster 1 ‘Health’.

The Commission will support a study to help identify high-burden conditions that remain under-researched and define research priorities to better address patients’ needs.

The Commission is not intending to raise awareness on this specific syndrome. However, it is working on an initiative (3) to support countries to improve the health of citizens by reducing the burden of non-communicable diseases.

It will focus on cardiovascular diseases, diabetes, chronic respiratory diseases, mental health and neurological disorders, as well as health determinants (4) in coordination with Europe’s Beating Cancer Plan (5).

The Commission is not aware of a global coordination between health authorities and pharmaceutical companies in the area of drug research in this area.

The Innovative Health Initiative (6), a public-private partnership between the EU and European life science industries, aims at translating health research and innovation into tangible benefits for patients.

It will cover drug research, and its Science & Innovation Panel will include representatives from the wider healthcare community (7).

Additionally, the Pharmaceutical Strategy for Europe (8) aims to address the unmet medical needs of patients by stimulating the development of medicinal products in areas where no, or no satisfactory, treatments are available.

⋅1∙ Help4ME (https://cordis.europa.eu/project/id/867223);MASTFAST (https://cordis.europa.eu/project/id/768728);DISCOvERIE

(https://cordis.europa.eu/project/id/848228);VirA (https://cordis.europa.eu/project/id/952376);EUROMENE COST action (https://www.cost.eu/cost- action/european-network-on-myalgic-encephalomyelitis-chronic-fatigue-syndrome-euromene/) ⋅2∙ Orchestra project: https://cordis.europa.eu/project/id/101016167;CoVICIS project: https://ec.europa.eu/info/funding-tenders/opportunities/portal/screen/how-to-

participate/org-details/999999999/project/101046041/program/43108390/details ⋅3∙ ‘Healthier together — EU Non-communicable Diseases Initiative’.

⋅4∙ i.e. nutrition

⋅5∙ https://ec.europa.eu/info/strategy/priorities-2019-2024/promoting-our-european-way-life/european-health-union/cancer-plan-europe_en

⋅6∙ https://www.ihi.europa.eu/

⋅7∙ public sector, regulators, patients, end-users

⋅8∙ https://ec.europa.eu/health/human-use/strategy_en