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Spain, December 14, 2022

The Horizon Europe program will provide new funding opportunities for research into high-burden and under-investigated diseases, including Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS). The importance of ME/CFS research is also highlighted by the wave of Long Covid patients reporting symptoms that are very similar, if not identical, according to CONFESQ

Horizon Europe will provide new funding opportunities for research into diseases with a high burden for patients and little researched, including Myalgic Encephalomyelitis or Chronic Fatigue Syndrome (ME/CFS). The importance of ME/CFS research is also highlighted by the wave of Long Covid patients reporting symptoms that are very similar, if not identical, to those of ME/CFS. While modern medicine has produced spectacular advances, some diseases remain poorly understood. An example is Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) which affects approximately 2 million European citizens. ME/CFS is characterized by severe energy impairment, post-exertional malaise, cognitive dysfunction, pain, metabolic disturbances, and other symptoms. It often causes severe disability and can leave patients bedridden for years. In 2020 the European Parliament passed a resolution for funding biomedical research on ME/CFS, which was adopted almost unanimously. A group of MEPs, including the Spanish Jordi Cañas (Cs), Dolors Montserrat (PP) and Cristina Maestre (PSOE), have worked since 2019 for this resolution and its implementation, both within the Commission for obtain specific funding, such as supporting patient associations through CONFESQ, throughout 2022, to achieve knowledge and recognition of the disease that implies improvements in health and social care for people suffering from ME/CFS in the different Autonomous Communities.. As a result of this effort, they have achieved that the new Horizon Europe 2023-2024 work program includes a call for research on medical conditions with a high burden and little research, such as ME/CFS. This call provides for the financing of approximately 4 grants that will receive between 6 and 7 million euros each. For patients, the proposal offers hope that an effective treatment for ME/CFS will one day be found. In the words of MEP Cañas: "This is good news for all those affected by ME/CFS. These funds will allow further investigation of a disease whose causes are unknown Finally, the Commission is responding to the demands of the resolution approved by the European Parliament in June 2020. Likewise, the MEPs, make a very positive assessment of this news. "Without a doubt, this funding will serve to start up and support very interesting projects that serve to alleviate the problems of people who suffer from this disease" – points out Cristina Maestre- "Not enough yet, but it is a first step and it is very important that we continue working from the European Parliament, as we have done up to now to endorse the demands of patients suffering from encephalomyelitis". For her part, Dolors Montserrat conveys: "it is the fair recognition of a claim by the people affected and a petition that the PP has been defending. We must attend to those diseases that are sometimes less well-known, cause pain and deserve to be investigated." Spanish associations involved in the campaign to raise awareness and request health improvements in care for those with ME/CFS, have so far obtained two Institutional Declarations from regional Parliaments (Castilla-La Mancha and the Balearic Islands), a Non-Ley Proposal (PNL ) by the Junta de Asturias and a letter of support from the Government of Extremadura, and are awaiting similar actions in other regions. The results, after the meetings held with the Ministries of Health, are being slow, with training programmed for primary care doctors in some of them and sending updated information. Is Europe more concerned about those affected by Myalgic Encephalomyelitis than local administrations? If the situation was already unaffordable in 2020, the increase in ME/CFS cases due to persistent covid makes it urgent, given the devastating consequences of this disease on the personal, family, social and work lives of those who suffer from it. CONFESQ is the National Coalition of Fibromyalgia, Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, Multiple Chemical Sensitivity and Electrohypersensitivity Entities, directly representing more than 10,000 patients.

Contact Contact name: Maria López Contact description: www.confesq.org Contact telephone number: 665836033