Our advocacy group adopted an official name and created a website. Dear friends, Hopefully, this message finds you well. The COVID-19 outbreak has a deep impact on our societies. We hope you and your loved ones are safe. Despite the difficult circumstances, there are hopeful signs from our community. Many of us are still working tirelessly to improve the situationContinue reading “A name and a website”
Monthly Archives: April 2020
Case definitions
There are several diagnostic criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) that determine how the illness is defined in scientific research and clinical practice. In biomedical research, the Canadian Consensus Criteria (CCC), published in 2003, are commonly used. In a survey by ME Action the CCC were judged to be the best case definition forContinue reading “Case definitions”
Help4ME
Help4ME is one of the few ME/CFS research projects the European Union has invested in. It will test the efficacy of GutMagnific®, a probiotic designed to correct the gut microflora imbalance in patients with ME/CFS. The project is coordinated by ImmuneBiotech Medical Sweden AB and has received an EU contribution of 50.000 euro through theContinue reading “Help4ME”
Horizon Europe
The Horizon Europe research program is a large scientific research initiative by the European Union that spans the years 2021-2027. The initiative has a budget of approximately 100 billion euros of which 7,7 billion has been allocated to the cluster “Health”. Horizon Europe forms an important opportunity to support and encourage scientific research into MyalgicContinue reading “Horizon Europe”
EUROMENE
EUROMENE is an integrated network of researchers and scientists who study the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The term EUROMENE is the acronym for European Network on ME/CFS, a COST Action project supported by the European Union. The aims of EUROMENE are to foster strategies for collaboration and harmonization of diagnosis and research andContinue reading “EUROMENE”
What is ME/CFS?
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a debilitating, chronic illness that affects many body systems. Patients can suffer from extreme exhaustion, unrefreshing sleep, problems with thinking and concentration, pain, orthostatic intolerance and many other symptoms. A hallmark feature of ME/CFS is a marked symptom exacerbation following exertion, which is referred to as post-exertional malaise (PEM). ME/CFSContinue reading “What is ME/CFS?”
Speech
On 3 October 2019 EMEC co-founder and ME/CFS patient Evelien Van den Brink made a powerful speech in the European Parliament. A video recording and (unofficial) transcript of the speech and subsequent comments by European officials are provided below. EU Committee on Petitions – Committee meeting – 3 October 2019 Tatjana Ždanoka, vice-chair of theContinue reading “Speech”
Join our Facebook group
EMEC works in collaboration with ME Action, a Los Angeles-based organization that supports ME/CFS advocacy projects around the world. ME Action has created a strong online network for ME/CFS patients and their loves ones including several popular Facebook groups. The #MEAction European Union (EU) Facebook group has been an important meeting place for ME/CFS advocatesContinue reading “Join our Facebook group”
How to sign the petition
The following information provides detailed instructions on how to sign Petition No 0204/2019 on a request for funding for biomedical research on Myalgic Encephalomyelitis. EU-citizens are advised to sign the petition online while non-EU-citizens can only sign the paper version. How to sign the petition on paper 1) print out this template and fill inContinue reading “How to sign the petition”
Petition
EMEC co-founder Evelien Van Den Brink has submitted petition No 0204/2019 on a request for funding for biomedical research on Myalgic Encephalomyelitis. The petition has received strong support from the ME/CFS community and has been signed 14.000 times In March 2019 Dutch ME/CFS patient Evelien Van Den Brink submitted petition No 0204/2019 to the EuropeanContinue reading “Petition”