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European ME Coalition (EMEC)

@emec.bsky.social
446 followers 56 following 99 posts

Advocacy organization for ME/CFS patients and their carers in Europe

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European ME Coalition (EMEC) @emec.bsky.social · 28/08/2026
9) Here is a link to the update on the EU website: ec.europa.eu/info/funding...
ec.europa.eu
EU Funding & Tenders Portal
The Funding and Tenders Portal is the single entry point (the Single Electronic Data Interchange Area) for applicants, contractors and experts in funding programmes and procurements managed by the Eur...
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European ME Coalition (EMEC) @emec.bsky.social · 28/08/2026
8) This call was an exceptional opportunity for research on post-infectious long-term conditions within Horizon Europe, so it would be a shame if no ME/CFS or Long Covid studies made it.
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European ME Coalition (EMEC) @emec.bsky.social · 28/08/2026
7) The results do not yet include details about the 5 proposals that were selected and will receive funding. The EU always takes a very long time to announce this. We hope it will include biomedical research on ME/CFS, Long Covid, or related diseases.
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European ME Coalition (EMEC) @emec.bsky.social · 28/08/2026
6) More emphasis on excellence and quality is needed, and less focus on impact and implementation. In ME/CFS research, there are few good leads, making it difficult to predict the impact a study proposal will have. This is a handicap for ME/CFS proposals.
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European ME Coalition (EMEC) @emec.bsky.social · 28/08/2026
5) It is possible that the evaluation process will change in the new Horizon Europe framework after 2027. The selection is increasingly based on minor differences or details in proposals (and with AI writing, this is likely only to get worse).
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European ME Coalition (EMEC) @emec.bsky.social · 28/08/2026
4) The EU had also appointed two independent observers to evaluate the review process of this call and other related ones. They say it was an immense process, with over 1000 external experts and 57 full-time staff members.
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European ME Coalition (EMEC) @emec.bsky.social · 28/08/2026
3) These 36 were good enough to be funded based on the EU's rules, but they had to make a selection because they only had funds to support 5. The 36 proposals together requested € 301 million, while the EU only had a budget of € 40 million.
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European ME Coalition (EMEC) @emec.bsky.social · 28/08/2026
2) There were 103 applications to this call, and only 5 were funded, a success rate of less than 5%. 36 out of the 103 reached the required scoring threshold: a score of 4 or higher in the three domains: Impact, Implementation, and Excellence.
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European ME Coalition (EMEC) @emec.bsky.social · 28/08/2026
1) 🇪🇺 More info became available about the recent EU call on post-infectious diseases. Several high-quality ME/CFS consortia applied for this call but were rejected. The required funding threshold was a perfect score of 15/15 points.
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European ME Coalition (EMEC) @emec.bsky.social · 22/07/2026
8) The letter was signed by MEPs from four member states — Belgium, Germany, Austria and France — representing different political groups. More info in the article on our website: europeanmecoalition.com/letter-for-l...
europeanmecoalition.com
Letter for long-term ME/CFS support • European ME Coalition
Ten Members of the European Parliament have written to Research Commissioner Ekaterina Zaharieva calling for dedicated, long-term EU funding for research into myalgic encephalomyelitis/chronic fatigue...
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European ME Coalition (EMEC) @emec.bsky.social · 22/07/2026
7) Arimont and colleagues write that “Decades of neglect and underfunding can evidently not be overturned by one study but need a consistent and long-term research program.”
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European ME Coalition (EMEC) @emec.bsky.social · 22/07/2026
6) Now that this is on the table and being discussed, it’s crucial to highlight the importance of ME/CFS research. The letter by the MEPs highlights the disease’ enormous impact and economic cost as one of the greatest health-policy challenges of the twenty-first century.
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European ME Coalition (EMEC) @emec.bsky.social · 22/07/2026
5) Importantly, an earlier reply by Commissioner Zaharieva said that they are “considering the possibility of including in future work programmes of Horizon Europe (2028-2034) topics like the call topic: ‘Tackling high burden for patients and under-researched medical conditions’”.
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European ME Coalition (EMEC) @emec.bsky.social · 22/07/2026
4) DISCOVER-ME was funded through a new call on high-burden, under-researched medical conditions. It’s important to include this or a similar call in the now Horizon Europe framework to provide suitable funding opportunities to ME/CFS researchers.
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European ME Coalition (EMEC) @emec.bsky.social · 22/07/2026
3) There need to be suitable calls for ME/CFS in future work programs of Horizon Europe (the EU’s biggest research program). Current funding for Horizon Europe runs until 2027 and discussions are underway to form the next multi-annual financial framework.
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European ME Coalition (EMEC) @emec.bsky.social · 22/07/2026
2) The European Union recently awarded € 7.5 million in funding to an ME/CFS consortium named DISCOVER-ME. This was an important milestone, but one project will not undo decades of underfunding.
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European ME Coalition (EMEC) @emec.bsky.social · 22/07/2026
1) Pascal Arimont and nine other Members of the European Parliament have written a letter to Research Commissioner Ekaterina Zaharieva calling for dedicated, long-term support for ME/CFS Research. #MECFS #MyalgicE #HorizonEurope
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European ME Coalition (EMEC) @emec.bsky.social · 02/07/2026
5) A lot of this work is taking place behind the scenes, which we cannot always publicly share. We will continue advocating for ME/CFS at the European level.
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European ME Coalition (EMEC) @emec.bsky.social · 02/07/2026
4) Pascal Arimont, one of the strongest champions of ME/CFS patients in the European Parliament, has been urging the commission to provide long-term support. europarl.europa.eu/doceo/docume...
europarl.europa.eu
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European ME Coalition (EMEC) @emec.bsky.social · 02/07/2026
3) The current Horizon Europe framework ends in 2027 and will be renewed. It is crucial that ME/CFS is not overlooked and that the call on high-burden diseases is included in new work programs.
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European ME Coalition (EMEC) @emec.bsky.social · 02/07/2026
2) For the ME/CFS field to grow on a par with similar diseases, there needs to be a steady stream of funding opportunities. This has always been the goal: not a one-time effort but repeated calls with a relevant scope in which ME/CFS researchers can be competitive.
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European ME Coalition (EMEC) @emec.bsky.social · 02/07/2026
1) We have written an article with more background information on the €7.5 of European funding for #MECFS. 👇 While a historic achievement, one project can not undo decades of underfunding. Our goal is a long-term support for ME/CFS research. europeanmecoalition.com/e-7-5-millio...
europeanmecoalition.com
€ 7.5 million in EU funding for ME/CFS • European ME Coalition
A large ME/CFS research project has been awarded € 7.5 million in funding by the European Commission. The project is led by Professors Eva Untersmayr and Simon Carding and will harmonize five European...
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European ME Coalition (EMEC) @emec.bsky.social · 02/07/2026
6) Link to the blog article: europeanmecoalition.com/e-7-5-millio...
europeanmecoalition.com
€ 7.5 million in EU funding for ME/CFS • European ME Coalition
A large ME/CFS research project has been awarded € 7.5 million in funding by the European Commission. The project is led by Professors Eva Untersmayr and Simon Carding and will harmonize five European...
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European ME Coalition (EMEC) @emec.bsky.social · 12/05/2026
Some steps forward have been taken, but far more is required to address the profound suffering experienced by at least 2 million Europeans with #MECFS, and millions more with #LongCovid, and other Post-acute infection syndromes #PAIS.
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European ME Coalition (EMEC) @emec.bsky.social · 12/05/2026
Although we may not always communicate publicly, the members of EMEC continue to work behind the scenes to encourage the European Commission to establish structural funding for #MECFS research.
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European ME Coalition (EMEC) @emec.bsky.social · 12/05/2026
On #WorldMEDay we send strength and courage to everyone living with #MECFS. We honour the memory of those we have lost and remain committed to transforming this tragedy into renewed determination to advocate for everyone living with this debilitating disease.
Collage of photos of blue forget-me-nots, the symbol of the disease ME/CFS.
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European ME Coalition (EMEC) @emec.bsky.social · 22/12/2025
Wishing you and your loved ones a happy holiday season and a healthier New Year. We hope 2026 will bring meaningful progress and increased funding for #MECFS research.
Image of a snowy mountain village in Europe with the text Happy Holidays.
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European ME Coalition (EMEC) @emec.bsky.social · 30/09/2025
Here's an overview of the program and speakers. MEP Laura BALLARIN, a member of the Panel for the Future of Science and Technology (STOA), just made the introduction. Prof. Evelina TACCONELLI's talk just started.
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European ME Coalition (EMEC) @emec.bsky.social · 30/09/2025
The workshop 'Long Covid: Current Realities, Future Directions' has just started in the European Parliament. You can follow the live-streamed here: multimedia.europarl.europa.eu/en/webstream...
multimedia.europarl.europa.eu
Panel for the Future of Science and Technology – Long COVID Workshop Panel - Multimedia Centre
The multimedia platform of the European Parliament is the official public available repository of the media production of the Secretariat of the European Parliament, managed by the Directorate-General...
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European ME Coalition (EMEC) @emec.bsky.social · 26/09/2025
7) The draft of the 2026-2027 Work Program has been made available by the European Commission itself in the Comitology Register and can be downloaded here: ec.europa.eu/transparency...
ec.europa.eu
Comitology Register
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European ME Coalition (EMEC) @emec.bsky.social · 26/09/2025
6) We believe this call provides a valuable funding opportunity for researchers of ME/CFS and Long Covid. The Work Program and the call are a preliminary draft , however, so they are still subject to changes.
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European ME Coalition (EMEC) @emec.bsky.social · 26/09/2025
5) Inclusion of small or medium-sized enterprises (SME), patient stakeholders, and AI or computational modelling are encouraged. Specific attention should be given to sex/gender, as women often experience post-infectious diseases differently.
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European ME Coalition (EMEC) @emec.bsky.social · 26/09/2025
4) Proposals should help to identify risk factors (such as genetics or immune responses), identify biomarkers or new diagnostic approaches and develop therapeutic interventions (“clinical studies are expected”).
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European ME Coalition (EMEC) @emec.bsky.social · 26/09/2025
3) The call focuses on “long-term conditions resulting from infections by any type of microorganism (including viruses, bacteria, parasites, and fungi), which persist after the initial infection has resolved.”
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European ME Coalition (EMEC) @emec.bsky.social · 26/09/2025
2) This new call is listed for 2026 and named: “HORIZON-HLTH-2026-01-DISEASE-03: Advancing research on the prevention, diagnosis, and management of post-infection long-term conditions” It has a budget of 40 million in total and aims to provide 6-8 million per project.
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European ME Coalition (EMEC) @emec.bsky.social · 26/09/2025
1) A first draft for the Horizon Europe work program 2026-2027 has been published by the European Commission. While it no longer includes the previous call on high-burden under-researched conditions, there’s now a new call on ‘post-infection long-term conditions’
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European ME Coalition (EMEC) @emec.bsky.social · 09/09/2025
🇪🇪 Does anyone know any ME/CFS patient organisations from Estonia? If you are an ME/CFS patient in Estonia, could you perhaps reach out to us at europeanmecoalition@outlook.com? Many thanks in advance!
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European ME Coalition (EMEC) @emec.bsky.social · 08/08/2025
We will keep fighting for research funding so science can provide answers and bring this disease out of the darkness.
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European ME Coalition (EMEC) @emec.bsky.social · 08/08/2025
Today is #SevereMEDay Our thoughts are with those stricken by the severest form of the neuro-immune disease #MECFS It is an endless physical torture with the added distress of being left without medical care and the stigma that aggravates the dire situation.
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European ME Coalition (EMEC) @emec.bsky.social · 04/07/2025
The target budget is 6 million per project. The type of research allowed is quite broad, but it needs to be a consortium, a collaboration of multiple partners and institutions. More info about the call can be found here: ec.europa.eu/info/funding...
ec.europa.eu
EU Funding & Tenders Portal
The Funding and Tenders Portal is the single entry point (the Single Electronic Data Interchange Area) for applicants, contractors and experts in funding programmes and procurements managed by the Eur...
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European ME Coalition (EMEC) @emec.bsky.social · 04/07/2025
5) It would be great if ME/CFS organizations were able to receive funding for their work from one of these EU programs. The ME/CFS community needs all the funding it can get to accelerate progress.
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European ME Coalition (EMEC) @emec.bsky.social · 04/07/2025
4) Creative Europe (CREA) supports cultural and creative sectors including the he audiovisual sector. ec.europa.eu/info/funding...
ec.europa.eu
EU Funding & Tenders Portal
The Funding and Tenders Portal is the single entry point (the Single Electronic Data Interchange Area) for applicants, contractors and experts in funding programmes and procurements managed by the Eur...
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European ME Coalition (EMEC) @emec.bsky.social · 04/07/2025
3) There’s also the Citizens, Equality, Rights and Values Programme (CERV) that aims to protect and promote Union rights and values such as inclusive societies. ec.europa.eu/info/funding...
ec.europa.eu
EU Funding & Tenders Portal
The Funding and Tenders Portal is the single entry point (the Single Electronic Data Interchange Area) for applicants, contractors and experts in funding programmes and procurements managed by the Eur...
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European ME Coalition (EMEC) @emec.bsky.social · 04/07/2025
2) The European Social Fund Plus (ESF+) has a large budget and objectives such as “Equal access to … social protection systems” and “social integration of people at risk of poverty and social exclusion.” european-social-fund-plus.ec.europa.eu/en/how-acces...
european-social-fund-plus.ec.europa.eu
How to access funding from the ESF+ | European Social Fund Plus
ESF+ funding is distributed through two pathways, called ‘strands’:
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European ME Coalition (EMEC) @emec.bsky.social · 04/07/2025
1) The European Commission has several funding opportunities for NGO’s, which might also be relevant for ME/CFS organizations. We wanted to share some of these programs. commission.europa.eu/funding-tend...
commission.europa.eu
Funding opportunities for NGOs
NGOs can benefit from a number of funding opportunities.
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European ME Coalition (EMEC) @emec.bsky.social · 18/06/2025
6) Deadline date: 16 September 2025 17:00:00 Brussels time Link to the call: ec.europa.eu/info/funding...
ec.europa.eu
EU Funding & Tenders Portal
The Funding and Tenders Portal is the single entry point (the Single Electronic Data Interchange Area) for applicants, contractors and experts in funding programmes and procurements managed by the Eur...
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European ME Coalition (EMEC) @emec.bsky.social · 18/06/2025
5) This is as close as we can get to ring-fenced funding for #MECFS at the European level. We hope #MECFS researchers will seize the opportunity and submit multiple strong applications.
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European ME Coalition (EMEC) @emec.bsky.social · 18/06/2025
4) By using this approach, high quality #MECFS research proposals will not be competing with those in other medical areas. This new approach means that one #MECFS research project will be funded with certainty if the threshold is reached.
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European ME Coalition (EMEC) @emec.bsky.social · 18/06/2025
3) This means that the highest rated application in the area of #MECFS will be funded on the condition that it attains a thresholds of 4 or more for Excellence, Impact, and Implementation with a cumulative threshold of 12.
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European ME Coalition (EMEC) @emec.bsky.social · 18/06/2025
2) For the #HorizonEurope call Tackling high-burden for patients and under-researched medical conditions (HORIZON-HLTH-2025-01-DISEASE-07) the Commission has created a new selection procedure (explained in the screenshot below). ec.europa.eu/info/funding...
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