Support for patients affected by myalgic encephalomyelitis/chronic fatigue syndrome

Subject: Support for patients affected by myalgic encephalomyelitis/chronic fatigue syndrome

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic illness that causes extreme exhaustion, cognitive dysfunction, chronic pain and a range of other symptoms. Many ME/CFS patients remain ill for decades and an estimated 25 % of ME/CFS patients are house- or bed-bound. The condition is estimated to affect 2 million individuals across Europe. There is currently no diagnostic test, no approved treatment and no cure for ME/CFS. Although the pathology of ME/CFS remains poorly understood, the illness is often triggered by an infection. Many patients with severe long COVID suffer from a similar syndrome and experts estimate that the COVID-19 pandemic dramatically increased the prevalence of ME/CFS.

The European Parliament adopted a resolution on 18 June 20201 in which it listed several EU- level actions required to help tackle the impacts of ME/CFS.

What will the new Commission do to finally:

1. Advocate for better recognition of ME/CFS as a legitimate health condition?

2. Ensure significant funding for biomedical research into ME/CFS at EU level, prioritising calls in this specific area?

3. Promote EU-level measures and funding for awareness campaigns about ME/CFS, medical education and training for health and social care professionals, and the exchange of ME/CFS-related best practice across Member States?

Submitted: 11.11.2024

1 https://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:52020IP0140.

Answer given by Mr Várhelyi on behalf of the European Commission

(27 January 2025)

The World Health Organisation is responsible for the international classification of diseases (1).

The Healthier Together — EU non-communicable diseases (NCDs) initiative (2) was launched in 2022 to support Member States in reducing the burden of NCDs, including conditions such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS).

The Commission supports the collection and transfer of best and promising practices across the EU via the EU Best Practice Portal and with funding from the EU4Health programme.

The priorities and actions to be taken forward under the Healthier Together initiative are agreed by the Member States in the Expert Group on Public Health (PHEG), the key forum for exchange with national authorities.

The Commission recognises the need for solutions to efficiently tackle ME/CFS. Call topics (3) were recently opened under the Horizon Europe Programme (4) that offered researchers in the ME/CFS area an opportunity to apply for research funding. EU- funded projects studying long COVID (5) also stand to benefit the field.

Horizon Europe will continue to offer opportunities for research funding, as call topics are broad enough to accommodate for more targeted ME/CFS research.

The Commission remains committed to promoting collaboration among Member States on tackling existing and emerging public health challenges.

1 1https://eur-lex.europa.eu/legal-content/EN/TXT/PDF/?uri=CELEX:52020IP0140.

1 ∙ ⸱ https://www.who.int/standards/classifications/classification-of-diseases

2 ∙ ⸱ https://health.ec.europa.eu/non-communicable-diseases/healthier-together-eu-non-communicable-diseases-initiative_en

3 ∙ ⸱ These topics included: ‘Tackling high burden for patients, under-researched medical conditions’ — https://ec.europa.eu/info/funding-

tenders/opportunities/portal/screen/opportunities/topic-details/horizon-hlth-2024-disease-03-14-two-stage and ‘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 4 ∙ ⸱ https://research-and-innovation.ec.europa.eu/funding/funding-opportunities/funding-programmes-and-open-calls/horizon-europe_en 5 ∙ ⸱ Projects include Long COVID — https://cordis.europa.eu/project/id/101057553 and ORCHESTRA — https://cordis.europa.eu/project/id/101016167. The Long COVID project will also study the response of patients with ME/CFS to certain therapies. The ORCHESTRA project has led to a better understanding of the determinants and clinical presentations of Long COVID syndrome, as well as the predictors of long-term fatigue.