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 after the adoption of the ME/CFS resolution by the European Parliament in June 2020.
Both letters were initiated by Member of the European Parliament (MEP) Pascal Arimont and signed by eleven MEPs of multiple political groups.
The letter addressing European Commissioner Kyriakides highlights the lack of progress on the topic of ME/CFS. The European Commission announced a scoping study to investigate if ME/CFS and other under-researched conditions can be included in future Horizon Europe work Programs. There is, however, still no official starting date for the scoping study and there already was a lot of delay even in announcing this step.
The eleven MEPs plead for a European network for biomedical ME/CFS research. This network could build on the experiences of EUROMENE and lead to the creation of a European Centre of Excellence for ME/CFS to spearhead the establishment of regional centres in Member States. The letter asks for a personal exchange with Commissioner Kyriakides to discuss these issues in the presence of patient representatives and interested researchers.
The letter to DG SANTE enquires about the possibility to include ME/CFS in the European Reference Network (ERN) for neurological diseases. Although ME/CFS is not a rare disease, physicians with experience in diagnosing and treating the illness are scarce. Patients would greatly benefit from a network that would allow the few physicians specialized in ME/CFS to share knowledge and instigate scientific research.
Lastly, a preliminary meeting was held between MEP Pascal Arimont, ME/CFS researchers, EMEC, and representatives of The European Federation of Pharmaceutical Industries and Associations (EFPIA). EMEC enquired if there have been internal reports on ME/CFS and investigations of the market potential within pharmaceutical companies. EFPIA said that it will forward this question to its members. It added that it would very much like to organize a roundtable and invite experts from their members to get the conversation going.