European ME Coalition (EMEC)
@emec.bsky.social
Advocacy organization for ME/CFS patients and their carers in Europe
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...
You can follow the live-streamed here:
multimedia.europarl.europa.eu/en/webstream...
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...
multimedia.europarl.europa.eu
September 30, 2025 at 12:11 PM
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...
You can follow the live-streamed here:
multimedia.europarl.europa.eu/en/webstream...
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’
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’
September 26, 2025 at 9:09 AM
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’
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’
🇪🇪 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!
If you are an ME/CFS patient in Estonia, could you perhaps reach out to us at europeanmecoalition@outlook.com?
Many thanks in advance!
September 9, 2025 at 8:56 AM
🇪🇪 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!
If you are an ME/CFS patient in Estonia, could you perhaps reach out to us at europeanmecoalition@outlook.com?
Many thanks in advance!
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.
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.
August 8, 2025 at 3:55 PM
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.
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.
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...
We wanted to share some of these programs.
commission.europa.eu/funding-tend...
Funding opportunities for NGOs
NGOs can benefit from a number of funding opportunities.
commission.europa.eu
July 4, 2025 at 8:23 AM
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...
We wanted to share some of these programs.
commission.europa.eu/funding-tend...
1) Important news: there is now a much greater chance than ever before for #MECFS scientists to obtain funding from #HorizonEurope.
June 18, 2025 at 11:56 AM
1) Important news: there is now a much greater chance than ever before for #MECFS scientists to obtain funding from #HorizonEurope.
#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
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
May 18, 2025 at 12:06 PM
#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
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
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...
Link 👇
research-and-innovation.ec.europa.eu/funding/fund...
May 16, 2025 at 3:33 PM
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...
Link 👇
research-and-innovation.ec.europa.eu/funding/fund...
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.
#MECFS is prominently mentioned as an example.
April 28, 2025 at 2:10 PM
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.
#MECFS is prominently mentioned as an example.
1) Member of the European Parliament Pascal Arimont (EPP) submitted a written question on ME/CFS in november last year.
January 27, 2025 at 2:23 PM
1) Member of the European Parliament Pascal Arimont (EPP) submitted a written question on ME/CFS in november last year.
Reposted by European ME Coalition (EMEC)
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
@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
January 19, 2025 at 4:07 PM
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
@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
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
#MECFS #LongCovid
January 11, 2025 at 10:27 AM
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
#MECFS #LongCovid
1) Happy holidays to everyone affected by ME/CFS.
December 17, 2024 at 10:42 AM
1) Happy holidays to everyone affected by ME/CFS.
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...
We challenge:
MEP Pascal Arimont
Prof. Jos Bosch
Mr. Anil Van Der Zee
More info:
mecfs-research.org/en/lemonchal...
December 14, 2024 at 11:08 AM
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...
We challenge:
MEP Pascal Arimont
Prof. Jos Bosch
Mr. Anil Van Der Zee
More info:
mecfs-research.org/en/lemonchal...
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.
We are very grateful for MEP Arimont’s strong and continued support for ME/CFS patients.
November 13, 2024 at 3:01 PM
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.
We are very grateful for MEP Arimont’s strong and continued support for ME/CFS patients.
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...
Thank you!
www.change.org/p/cochrane-w...
January 15, 2024 at 9:06 AM
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...
Thank you!
www.change.org/p/cochrane-w...
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!
December 22, 2023 at 5:52 AM
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!
Reposted by European ME Coalition (EMEC)
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
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
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 ...
www.youtube.com
November 18, 2023 at 11:35 AM
Reposted by European ME Coalition (EMEC)
🙏 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 🙏
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 🙏
November 6, 2023 at 10:11 AM
🙏 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 🙏
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 🙏
Reposted by European ME Coalition (EMEC)
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
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
November 1, 2023 at 1:44 AM
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
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
Reposted by European ME Coalition (EMEC)
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
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
#DecodeME needs more UK participants with an ME/#CFS diagnosis, incl. those diagnosed following Covid infection, & reminds people who have been sent a spit kit to return them. Final date for submitting the questionnaire is 15th November at 5pm
www.decodeme.org.uk/portal/
#MEcfs #MyalgicE #PwME
www.decodeme.org.uk/portal/
#MEcfs #MyalgicE #PwME
October 12, 2023 at 1:58 PM
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
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
Reposted by European ME Coalition (EMEC)
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...
Stephanie Grach, and Ravi Ganesh and Tony Chon on this! #MedEd #MedTwitter 🧵 www.mayoclinicproceedings.org/article/S002...
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...
www.mayoclinicproceedings.org
October 7, 2023 at 4:03 PM
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...
Stephanie Grach, and Ravi Ganesh and Tony Chon on this! #MedEd #MedTwitter 🧵 www.mayoclinicproceedings.org/article/S002...
Reposted by European ME Coalition (EMEC)
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!
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!
October 7, 2023 at 2:31 AM
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!
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!
Reposted by European ME Coalition (EMEC)
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
ME= myalgic encephalomyelitis aka ME/CFS
Learn more at meaction.net.
#pwME #MECFS #MyalgicEncephalomyelitis #LongCovid
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 ...
meaction.net
October 7, 2023 at 11:09 PM
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
ME= myalgic encephalomyelitis aka ME/CFS
Learn more at meaction.net.
#pwME #MECFS #MyalgicEncephalomyelitis #LongCovid
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...
europeanmecoalition.com/resources-fo...
October 5, 2023 at 2:55 PM
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...
europeanmecoalition.com/resources-fo...