World ME Day 2021

On May 12, 2021, World ME Day, we are asking the world to pay attention to the difficult situation of patients whose lives have been abruptly halted by the illness Myalgic Encephalomyelitis, sometimes called chronic fatigue syndrome (ME/CFS).  Although there are millions of people with ME worldwide, the illness is under-researched and still poorly understood.Continue reading “World ME Day 2021”

Work in Progress

Recently, the European ME Coalition (EMEC) had a meeting with representatives of the European Commission. Last year the European Parliament adopted a resolution that called for additional funding for biomedical research on Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). EMEC recently had a meeting with representatives of the European Commission to discuss the follow-up on the resolutionContinue reading “Work in Progress”

New Video of Evelien’s Speech

Olivia Pham made a special version of the video of Evelien’s speech for ME/CFS patients in the European Parliament and included pictures of patients that were shown. Olivia Pham is a former student of Pleuni Pennings, associate professor at San Francisco State University in the Biology Department, who blogged about ME/CFS last year. Pleuni Pennings’ post inspiredContinue reading “New Video of Evelien’s Speech”

EMEC supports letters to French authorities

The European ME Coalition (EMEC) sent letters to several French health authorities in support of the excellent letters that were recently sent by the French organizations Association française du Syndrome de Fatigue Chronique (ASFC) and MillionsMissing France.  Both organizations asked the French authorities to improve the situation of patients with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)Continue reading “EMEC supports letters to French authorities”

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”

Evelien responds to the EU Commission

On 18 August, Commissioner Mariya Gabriel responded to questions raised by Member of Parliament Jordi Cañas regarding the recent ME/CFS resolution. Unfortunately, the answer, provided on behalf of the European Commission, does not acknowledge the underfunding of ME/CFS research in Europe nor does it propose new initiatives to address this urgent problem. Evelien Van DenContinue reading “Evelien responds to the EU Commission”

Fact sheets

The European ME Coalition (EMEC) presents three new fact sheets about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The documents briefly summarize key facts about the economic and societal impact of ME/CFS in Europe and the recent efforts made by ME/CFS advocates including the petition submitted by Evelien Van Den Brink. The fact sheets will help toContinue reading “Fact sheets”

European Parliament adopts ME resolution

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 intoContinue reading “European Parliament adopts ME resolution”