European ME Coalition (EMEC)
@emec.bsky.social
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Advocacy organization for ME/CFS patients and their carers in Europe
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.
3 days ago
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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...
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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...
https://multimedia.europarl.europa.eu/en/webstreaming/panel-for-future-of-science-and-technology-long-covid-workshop-panel_20250930-1400-SPECIAL-STOA
3 months ago
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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’
3 months ago
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🇪🇪 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
[email protected]
? Many thanks in advance!
4 months ago
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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.
5 months ago
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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...
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Funding opportunities for NGOs
NGOs can benefit from a number of funding opportunities.
https://commission.europa.eu/funding-tenders/how-apply/eligibility-who-can-get-funding/funding-opportunities-ngos_en
6 months ago
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1) Important news: there is now a much greater chance than ever before for
#MECFS
scientists to obtain funding from
#HorizonEurope
.
6 months ago
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#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
7 months ago
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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...
add a skeleton here at some point
7 months ago
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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.
8 months ago
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1) Member of the European Parliament Pascal Arimont (EPP) submitted a written question on ME/CFS in november last year.
11 months ago
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reposted by
European ME Coalition (EMEC)
Tom Kindlon
11 months ago
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
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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
12 months ago
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1) Happy holidays to everyone affected by ME/CFS.
about 1 year ago
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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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about 1 year ago
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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.
about 1 year ago
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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...
almost 2 years ago
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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!
about 2 years ago
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reposted by
European ME Coalition (EMEC)
Simon McGrath
about 2 years ago
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
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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 ...
https://www.youtube.com/watch?v=NMdThKz5JvM&embeds_referring_euri=https%3A%2F%2Fwww.decodeme.org.uk%2F&source_ve_path=OTY3MTQ&feature=emb_imp_woyt
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reposted by
European ME Coalition (EMEC)
Dr. Sabine Hermisson 🦋
about 2 years ago
🙏 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
about 2 years ago
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
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reposted by
European ME Coalition (EMEC)
Tom Kindlon
about 2 years ago
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
add a skeleton here at some point
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reposted by
European ME Coalition (EMEC)
It's ME(Jaime)
about 2 years ago
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...
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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...
https://www.mayoclinicproceedings.org/article/S0025-6196(23)00402-0/fulltext
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reposted by
European ME Coalition (EMEC)
Open Medicine Foundation (OMF)
about 2 years ago
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
about 2 years ago
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
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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 ...
https://meaction.net
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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...
about 2 years ago
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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.
about 2 years ago
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