European Parliament adopts ME resolution

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On 17 June 2020, the European Parliament adopted a resolution on additional funding for biomedical research on Myalgic Encephalomyelitis (ME). 676 members of parliament voted in favour, 4 against with 8 abstentions. This is the first-ever resolution on ME adopted by the European Parliament and it could mean a historic breakthrough for scientific research into the illness.

European Parliament resolution of 18 June 2020 on additional funding for biomedical research on Myalgic Encephalomyelitis (2020/2580(RSP))

In March 2019 Dutch ME/CFS patient Evelien Van Den Brink submitted petition No 0204/2019 to the European Union (EU). The petition called for more biomedical research into ME in order to deliver a diagnostic test, clinical trials, and effective treatments. The petition received strong support from the online patient community and has been signed more than 15.000 times.

Following a speech by Van Den Brink in the EU Parliament, members of the Committee on Petitions (PETI) formulated a resolution on additional funding for biomedical research on ME/CFS. This resolution has now been adopted in a plenary vote in the European Parliament with 98% of the members of parliament voting in favour. Dolors Montserrat, Chair of the Petitions Committee commented that “by adopting this resolution, Parliament gives voice to patients’ concerns and supports their legitimate requests for greater awareness and funding for research.”

The resolution describes ME/CFS as a “complex, highly disabling disease” and a “hidden public health problem in the EU”. Estimates indicate that approximately 2 million EU citizens suffer from ME/CFS and that some have become bedbound or housebound because of illness.  Although the World Health Organization classifies ME/CFS as a disorder of the nervous system, its aetiology remains poorly understood. There are still no established biomedical diagnostic tests for ME/CFS, nor are there any EU/EMA-approved treatments.

The resolution writes that “the current underfunding of biomedical research into ME/CFS is unjustified considering the estimated large number of patients and the consequent economic and social impact of this disease.” It, therefore “calls on the Commission to allocate additional funding and prioritise calls for projects specifically focused on biomedical research into ME/CFS”

In addition, the resolution “calls on the Commission to commission a study assessing the overall social and economic costs attributable to ME/CFS within the EU.” The resolution also requests funding to ensure “appropriate and improved medical education and training for health and social care professionals working with ME/CFS patients” Finally, the document invites both the commission and member states “to launch information and awareness-raising campaigns among health professionals and the public in order to alert the population to the existence and symptoms of ME/CFS.”

We, the European ME Coalition (EMEC) are optimistic about the resolution and hope it will be the starting point of more ME/CFS research in Europe. We will work hard to make sure that the European Commission will follow up on the commitments laid out in the resolution. We would like to thank the members of the European Parliament for their support. We also thank the many ME/CFS patient organizations that have supported our initiatives at the European level. We are immensely grateful for the ME/CFS patients who have made this breakthrough possible, by signing the petition or writing to their members of parliament. Together we can make a difference!