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. On 1 December 2021 the Parliament’s Petition Committee called for an update and the current position has been revealed in an answer to a written question (E-002486/2024) to the responsible EU Commissioner.
Q – 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 2020 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:
- Advocate for better recognition of ME/CFS as a legitimate health condition?
- Ensure significant funding for biomedical research into ME/CFS at EU level, prioritising calls in this specific area?
- 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?
A – The World Health Organisation is responsible for the international classification of diseases
The Healthier Together — EU non-communicable diseases (NCDs) initiative 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 [‘Tackling high burden for patients, under-researched medical conditions’ and ‘Relationship between infections and non-communicable diseases’ ] were recently opened under the Horizon Europe Programme that offered researchers in the ME/CFS area an opportunity to apply for research funding. EU-funded projects studying long COVID 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.
In other words – a partial response and no actual initiative reminiscent of UK MRC position of standing ready to fund should suitable applications be received.