On 28 January 2022, the first meeting of a new parliamentary interest group on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) was held. Organized by Pascal Arimont, the group will allow for a more structured collaboration on topics concerning the illness ME/CFS in the European Parliament.
The meeting brought together patient representatives, Members of the European Parliament (MEPs), and scientists to discuss how the objectives of the European resolution on ME/CFS, can be achieved.
MEPs Pascal Arimont, Cindy Franssen, and Radan Kanev attended the meeting while Alex Bernhuber, Jordi Cañas, and Günther Sidl were represented by an assistant. Other MEPs could not attend but indicated an interest in future meetings and actions of this new interest group on ME/CFS. They were sent a summary of the meeting.
Professor Carmen Scheibenbogen from Charité Berlin gave an overview of the current state of ME/CFS research in Europe. She explained that the COST Action EUROMENE (2015-2021) was an important initiative with 21 participating countries. This network of researchers published 14 joint papers including clinical guidelines for ME/CFS. Nonetheless, there were fewer ME/CFS researchers in Europe than excepted.
ME/CFS researchers Prof. Jonas Bergquist, Dr. Eliana Lacerda, and Dr. Luis Nacul also attended the meeting to answer further questions. They indicated that EUROMENE was useful for establishing an interactive network but that it now needs to be utilized for biomedical research. Specific research grants are needed to achieve this goal, and this is currently missing in Europe. Prof. Bergquist explained that, so far, his research center for ME/CFS in Uppsala is entirely funded via donations from the US and by crowdfunding. Applications for European funding have been unsuccessful.
EMEC was represented at the meeting by Joachim Hermisson, the father of a daughter with very severe ME/CFS. His presentation explained that Europe is running behind the US, Canada, and Australia in supporting ME/CFS research. Thus far, not a single biomedical study on ME/CFS has been financed with European funding.
The European Commission promised a ‘scoping study’ to investigate how ME/CFS and other poorly researched conditions can be included in future Horizon Europe work programs. While this is a useful project, after much delay, there is still no official starting date.
The expected time to results does not match the urgent needs. Because of the COVID-19 pandemic, the number of ME/CFS cases is increasing rapidly. According to EMEC, the scoping study cannot be the only measure taken in such a public health crisis.
EMEC said that the possibility of a European Reference Network (ERN) for ME/CFS or similar initiatives should be further explored. While the illness is prevalent, medical expertise on ME/CFS is rare. Most patients have no access to a physician who understands their illness. EMEC offered several recommendations on what MEPs can do to help make sure that the ME/CFS resolution leads to tangible results.
MEP Arimont agreed and suggested a brief to-do list for further actions. The new parliamentary interest group will contact the responsible service of the European Commission. It will also explore if a meeting could be prepared with representatives of the pharmaceutical industry to see what obstacles currently exist for initiating clinical trials on ME/CFS. This will be further discussed during the next meetings of the parliamentary interest group on ME/CFS.
EMEC would like to thank MEP Pascal Arimont, the other MEPs, and the ME/CFS researchers for this productive meeting.