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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

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

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 · 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 · 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

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

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

1) Important news: there is now a much greater chance than ever before for #MECFS scientists to obtain funding from #HorizonEurope.

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European ME Coalition (EMEC) @emec.bsky.social · 18/05/2025

#BlueSunday2025 at the EMEC headquarters 💙 Coffee or lemonade with cookies and a game of Rummikub to celebrate this special day. Our dog mascot Shifra got some biscuits too. We donated to the @irishmecfsassoc.bsky.social in honor of our friend @tomkindlon.bsky.social #TeaPartyForME #MECFS

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European ME Coalition (EMEC) @emec.bsky.social · 16/05/2025

The final version of the 2025 Horizon Europe work program has now been published and ME/CFS is indeed mentioned under the call on high-burden, under-researched medical conditions. Link 👇 research-and-innovation.ec.europa.eu/funding/fund...

research-and-innovation.ec.europa.eu

Cluster 1: Health

Aims of funding and intervention areas in Horizon Europe for health. Policy, strategy and how to apply for funding.

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European ME Coalition (EMEC) @emec.bsky.social · 28/04/2025

1) Good news: the European call on high-burden, under-researched conditions will likely be renewed in the 2025 work program of Horizon Europe. #MECFS is prominently mentioned as an example.

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European ME Coalition (EMEC) @emec.bsky.social · 27/01/2025

1) Member of the European Parliament Pascal Arimont (EPP) submitted a written question on ME/CFS in november last year.

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Reposted by European ME Coalition (EMEC)

Tom Kindlon @tomkindlon.bsky.social · 19/01/2025

The European ME Coalition (EMEC) @emec.bsky.social gave an update on the Horizon Europe call on high-burden, under-researched conditions europeanmecoalition.com/update-the-r... Image is from latest Science for ME weekly update #MEcfs #CFS

Europe
The European ME Coalition (EMEC) gave an update on the Horizon Europe call on high-burden, under-researched conditions. Three funded projects have been announced and focus on endometriosis, familial hypercholesterolemia, and difficult-to-treat rheumatoid arthritis. EMEC was involved in a major consortium that included ME/CFS experts across Europe but failed to obtain funding.

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European ME Coalition (EMEC) @emec.bsky.social · 11/01/2025

1) It’s been a long time since you heard from us, but we can finally give an update of what we have been doing behind the scenes. #MECFS #LongCovid

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European ME Coalition (EMEC) @emec.bsky.social · 17/12/2024

1) Happy holidays to everyone affected by ME/CFS.

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European ME Coalition (EMEC) @emec.bsky.social · 14/12/2024

We are supporting the #LemonChallengeMECFS 🍋 The lemon acts as a symbol for the bitterness of the disease but also for the hope of healing. We challenge: MEP Pascal Arimont Prof. Jos Bosch Mr. Anil Van Der Zee More info: mecfs-research.org/en/lemonchal...

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European ME Coalition (EMEC) @emec.bsky.social · 13/11/2024

Member of the European Parliament Pascal Arimont has submitted a written question asking the new European Commission how it will stimulate ME/CFS research. We are very grateful for MEP Arimont’s strong and continued support for ME/CFS patients.

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European ME Coalition (EMEC) @emec.bsky.social · 15/01/2024

If you haven’t done so yet, please consider signing this petition calling on Cochrane to withdraw their 2019 review of exercise therapy for 'CFS'. It is important that it gains as much support from the #MECFS community and its allies as possible. Thank you! www.change.org/p/cochrane-w...

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European ME Coalition (EMEC) @emec.bsky.social · 22/12/2023

It has been a while since we gave an update about our work. Our efforts have mostly taken place behind the scenes this past year. This doesn’t mean nothing has happened!

Serene winter landscape with black tree silhouettes against a blue sky and a message ‘Happy Holidays’.

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Reposted by European ME Coalition (EMEC)

Simon McGrath @simonmcg.bsky.social · 18/11/2023

Wow, 26,000 #PwME completed the questionnaire, creating the world's biggest #MEcfs sample. 21k invited to give DNA. Next: Looking for genetic clues to ME causes: 1. 4k people yet to return DNA samples asked to do so ASAP 2. DNA will be extracted, analysed & compared with UK population 1/2

youtube.com

DecodeME: Closed to recruitment and thank you message from the management group

Sonya, Chris and Andy say thank everyone who has participated in the DecodeME study and explain what will happen next. If you have been invited to send in a ...

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Reposted by European ME Coalition (EMEC)

Dr. Sabine Hermisson 🦋 @sabinehermisson.bsky.social · 06/11/2023

🙏 Dringender Aufruf: Multiply for ME Wir brauchen dringend eure Unterstützung, damit Mila, die heute ihren 21. Geburtstag hat, und Tausende weitere #MECFS-Betroffene eine Chance auf ein Leben haben. 🧵 Bitte RT 🙏

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Reposted by European ME Coalition (EMEC)

Tom Kindlon @tomkindlon.bsky.social · 01/11/2023

This trial has funding to analyse 25000 samples but is well short. To register/find more info, go to: decodeme.org.uk/portal Please tell others. This article explains why the study is important: www.healthrising.org/blog/2023/10... #MyalgicEncephalomyelitis #DecodeME #MEcfs #CFS #PwME

DecodeME Complete the DecodeME Questionnaire by 15th of November 5pm to Become a Participant Just two weeks to go Please highlight this opportunity widely, on and off-line. UK participants only but important to all of us around the world

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Reposted by European ME Coalition (EMEC)

Tom Kindlon @tomkindlon.bsky.social · 12/10/2023

Update from today’s webinar: over 20,500 kits requested (not all circulated yet). Over 15,500 returned. They have funding for analysis of 25,000 (including 5000 #PostCovid #Mecfs). So please keep highlighting recruitment & also the need to return kits #PwME #CFS #LongCovid #LC #DecodeME

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Reposted by European ME Coalition (EMEC)

It's ME(Jaime) @exceedhergrasp1.bsky.social · 07/10/2023

Overjoyed to announce my Concise Clinical Review of ME/CFS in Mayo Clinic Proceedings (with updated diagrams!) Very glad to have worked with Stephanie Grach, and Ravi Ganesh and Tony Chon on this! #MedEd #MedTwitter 🧵 www.mayoclinicproceedings.org/article/S002...

mayoclinicproceedings.org

Diagnosis and Management of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic neurologic disease often preceded by infection. There has been increased interest in ME/CFS recently because of its significant...

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Reposted by European ME Coalition (EMEC)

Open Medicine Foundation (OMF) @openmedf.bsky.social · 07/10/2023

We're thrilled to share some exciting news! OMF’s StudyME Registry has reached a significant milestone: 6,000 sign-ups! Haven't joined yet? Learn more & sign up now: ow.ly/hn5j50PS2t8 We extend our heartfelt thanks to each of you who joined OMF's StudyME Registry!

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Reposted by European ME Coalition (EMEC)

#MEAction Network @meactnet.bsky.social · 08/10/2023

So nice to see so many community members have found us here already! For anyone new to us- we are #MEAction, a US-based non-profit, igniting a global revolution in ME care. ME= myalgic encephalomyelitis aka ME/CFS Learn more at meaction.net. #pwME #MECFS #MyalgicEncephalomyelitis #LongCovid

meaction.net

Home

we’re IGNITING A GLOBAL REVOLUTION IN ME CARE Our movement fights for recognition, education, and research so that, one day, all people with ME and CFS will have support and access to compassionate ...

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European ME Coalition (EMEC) @emec.bsky.social · 05/10/2023

We have a dedicated page for #MECFS scientists who are looking for ways to fund their biomedical research. We hope this will be a useful collection of resources to those who are studying ME and also #LongCOVID europeanmecoalition.com/resources-fo...

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European ME Coalition (EMEC) @emec.bsky.social · 03/10/2023

Happy to be here! 🇪🇺 In case you haven’t heard of us, check out our website: europeanmecoalition.com We are trying to raise awareness of Myalgic Encephalomyelitis #MECFS at the European level, denouncing the lack of funding for biomedical scientific research on this devastating disease.

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