Given impetus by MEP Pascal Arimont, and attended by two other MEPs (Cindy Franssen and Radan Kanev) and representatives of three more (Alex Bernhuber, Jordi Cañas and Günther Sidl), a new European Parliament Interest Group on ME/CFS has been formed. At its first meeting on 28th January 2022, the MEPs were joined by patient representatives and researchers determined to ensure that the European Commission act to fulfil the demands of the European Parliament’s historic vote on 17th June 2020 which urged the Commission to transform the ME research landscape.
Among the researchers present were Prof Carmen Scheibenboggen (ME Research UK-funded researcher) and UK ME/CFS biobank researchers Drs. Eliana Lacerda, and Luis Nacul.
In summary, MEP Arimont undertook to prepare a to-do list for further action and that the Interest Group would contact both the European Commission and also explore discussions with pharmaceutical companies to discover the barriers which exist to hamper clinical trials in ME/CFS research.
A disease from which an estimated 2 million people in Europe already suffer, and yet is hardly known by the general public and far too little researched: “Myalgic Encephalomyelitis”. #MECFS is still incurable, many patients do not receive correct diagnosis. This has to change and @Europarl_EN has already made an urgent call for this in 2020. Experts believe that #LongCovid will continue to significantly increase the problem and the incidence of the disease. We expect concrete action from the @EU_Commission to enable research. We exchanged views on how to achieve this today in our first #MECFS Group meeting in the EU Parliament. We will now once again urgently confront the EU Commission with our demands. This disease must no longer be ignored!Pascal Arimont MEP tweets @pascal_arimont