The World ME Alliance has written to Dr. Ghebreyesus of the World Health Organization (WHO) calling on him to ensure that progress for people with Long Covid doesn’t leave the millions already suffering with ME behind and to meet with representatives. On Wednesday 12th October Dr. Tedros Ghebreyesus, Director General of the World Health Organization, wrote an op-ed in the Guardian. In it, he lays clear the devastationContinue reading “World ME Alliance calls on WHO Director General to recognize ME alongside Long Covid”
Author Archives: EMEC team
What do you know about ME? World ME Day asks you to learn more
Myalgic Encephalomyelitis (ME) dramatically limits the activities of millions of people across the world. In its most severe form, this disease can consume the lives of those affected. For the first time in history, an alliance of organizations from across the globe is jointly launching World ME Day on May 12th 2022. The European MEContinue reading “What do you know about ME? World ME Day asks you to learn more”
EMEC joins the World ME Alliance
EMEC has become a member of the World ME Alliance, a collaboration of ME/CFS organizations that advocates for ME/CFS patients around the world. The World ME Alliance aims to share experiences among ME/CFS associations, coordinate global awareness campaigns, and encourage the World Health Organization to take action on ME/CFS. Major organizations such as ME Action,Continue reading “EMEC joins the World ME Alliance”
Parliamentary interest group for ME/CFS writes to European Commission
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 afterContinue reading “Parliamentary interest group for ME/CFS writes to European Commission”
A parliamentary interest group for ME/CFS
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 ParliamentContinue reading “A parliamentary interest group for ME/CFS”
Summary of the PETI meeting on the ME/CFS petition
On 1 December 2021, the Committee on Petitions of the European Parliament (PETI) held a second discussion of petition 0204/2019 on biomedical research on myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). A full recording of the meeting can be found below. Evelien’s speech The Vice-Chair of the Committee on Petitions, Tatjana Ždanoka, opened the discussion. She introducedContinue reading “Summary of the PETI meeting on the ME/CFS petition”
An overview of funding, biobanks, and networks for ME/CFS scientists
The European ME Coalition (EMEC) published an international overview of funding sources, biobanks and networks for scientists who are interested in studying myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Worldwide there is a dire shortage of funding opportunities for ME/CFS research. We hope, however, that this summary will facilitate the search for useful resources and that itContinue reading “An overview of funding, biobanks, and networks for ME/CFS scientists”
The next step: a new proposal by the European Commission
In response to a parliamentary question by Pascal Arimont, the European Commission stated that it is working to address under-investigated conditions, of which ME/CFS is a paradigmatic example, in the first work programme of Horizon Europe. Although the details of the proposal are still confidential, we believe this could be an important step towards increasedContinue reading “The next step: a new proposal by the European Commission”
Interview with EMEC Co-founder Evelien Van Den Brink
Last week the Dutch magazine ‘Vriendin’ published an in-depth interview with EMEC co-founder Evelien Van Den Brink. The interview talks about severe ME/CFS, stigma and misconceptions, a lack of scientific research, problems with graded exercise and cognitive behaviour therapy and the European petition Evelien started to make a positive change. We have translated the interviewContinue reading “Interview with EMEC Co-founder Evelien Van Den Brink”
A constructive meeting
Thanks to Belgian member of parliament Pascal Arimont, EMEC was able to have a constructive meeting with representatives of the European Commission. The Commission has taken on board our concerns as strongly expressed by the European Parliament. We will continue to work to make sure that the commitments made in the ME/CFS resolution are turnedContinue reading “A constructive meeting”